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Caregivers Spend $20,000/yr. on Loved Ones with Alzheimer's
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An incident has come to my attention that I feel strongly is appropriate for discussion on this website dedicated to spousal issues related to Alzheimer's Disease/dementia. I ask that you read the article in this LINK and my comments very thoroughly and carefully before posting your opinions and comments on the Message Boards. Please be sure to read the family statement that appears after the article.
The situation of sexual consent between a "well" and "demented" spouse has been discussed previously on this website. To simplify a very complex matter, our discussions boiled down to this:
Let's assume, for the purpose of this discussion, that the wife of the man in the article was cognitively able to consent. If that was the case, what do you think about his prosecution? Who decides and how is it decided if a demented woman is capable of consent? Should demented spouses living in a facility be allowed "private time" with their "well" spouse?
What if the demented spouse is a man, and his wife would like private "cuddle" time with him? I am NOT using "cuddle" as a euphemism for sex. I mean what the word implies – intimate hugging and cuddling. What if the man is capable of more than cuddling, and the wife desires it? The question is the same (or should be) as in the case of a demented wife. Who decides and how is it decided if the demented person is capable of consenting? Should husbands and wives be prosecuted if someone decides that the demented spouse is cognitively incapable of giving consent?
What about the strong bond between longtime spouses who are still capable of "reading" each other's unspoken emotions and desires? Only those who have experienced it can understand and acknowledge that such a bond exists. My own husband can barely complete a sentence because he cannot hold a thought in his head long enough to remember what he wants to say. Yet there are times when my old Sid appears with a word, a gesture, a look that only I can interpret.
I know from experience that my readers are intelligent, articulate, and thoughtful, so let's tackle this complex subject with the intellect and respect it deserves.
MESSAGE BOARDS: Joan's Blog – Is it sexual assault?
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©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken
That time of year is upon us again - The Holiday Season. Whether you celebrate Christmas, Chanukah, or Kwanza, it is a time for family, parties, celebrations, food, and memories of times past with your Alzheimer afflicted spouse. It can be an extremely hectic and despondent time for an Alzheimer Spouse. I cannot change your situation. I cannot bring back the times before Alzheimer Disease changed your life forever. What I can do, and do so every year, is provide you with a series of excellent tips and strategies to make the holiday season as stress free as possible for you. With that in mind, I ask you to click on this picture link for my entire series of Holiday Stress Management Tips. . I do hope they are helpful to you. If you have more to add, please do so on the Message Boards: Joan's Notice: 2014 Holiday Stress Management Tips.
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©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken
If I am going to be truthful, and you know that my hallmark is honesty, no matter how uncomfortable or brutal it may be, I will tell you that it takes deep digging for an Alzheimer Spouse to find something for which to be thankful on this holiday. In my yearly Thanksgiving blog, I have always written as positively as I was able, enumerating the blessings we do have in spite of what we have lost to Alzheimer's Disease. Many of us have at least one or all of the following:
Warm homes
Enough food to eat
Loving family members
Loyal friends
For these we should be thankful.
Although this is the third year in a row that I have traveled and spent Thanksgiving without Sid, I choose not to focus on that loss, as it would destroy the joy I feel by being lucky enough to have all of the above. My holiday is being spent with my sister and our family full of children, babies, and dogs.
My wish for you is that you are able, in spite of the unwelcome changes Alzheimer's Disease has brought to your life, to focus on the blessings you do have.
I think that it would be helpful to all of us if we could share with each other, what we are thankful for. MESSAGE BOARD: Count our Blessings.
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken.
JOAN'S BLOG – MONDAY, NOVEMBER 24, 2014 - SPOUSE IN A FACILITY (OR HAS PASSED ON)– ISOLATION PART III - final in the series
You have reached the end of your rope. You can no longer care for your spouse at home and make the difficult, heart wrenching decision to place them in a care facility. There are a multitude of emotions and difficulties you will face as you transition from being a full time, hands on caregiver to a "care supervisor" of your spouse's needs, while he/she resides in a specialized facility. I have discussed many of these in previous blogs that have chronicled my own journey from wife to caregiver to care supervisor. Since this blog is one in a series about "isolation", I am going to focus solely on that topic. You may read about other "placement" issues by clicking this previous blog link and reading the blogs from July 2013 – the present.
In the previous two blogs in this series (see below), we discussed how 24/7 caregiving isolates us from friends, family, and activities, and what, if anything, can be done to alleviate the situation.
No two experiences are alike. Everyone's reaction to placing a spouse is based upon the type of marriage you had, your family and financial situations, your individual life experiences, and your own personal method of dealing with stress. What is a constant, is that we all go through a difficult period of emotional adjustment. However, in relation to isolation, what I thought would happen was far different from what actually did happen.
Although devastated and paralyzed by grief, as detailed in my blogs, there was a little space in my brain that thought – the chains of imprisonment have been broken. I will be able to get out of the house whenever I want, go wherever I want, and do whatever I please. I was ill prepared for the reality that it would take so long for me to "heal" from the exhaustion of years of caregiving; that it would be 7 long months before I would even feel like going out of the house to create a new life, meet new people and explore opportunities. Once that decision was made, the next reality set in that none of it was going to come knocking on my door. I was just as alone and isolated as I had been before placement, but with less to keep me occupied. More isolation led to more depression, which led to more isolation. Anyone who is severely depressed knows that depression hinders your ambition and ability to act.
I know from reading the message boards that I am not alone in the cycle of depression and isolation. The issue is what to do about it before it destroys us. I was lucky enough to find a counselor, with whom I developed a good rapport, who is helping me put my life back together piece by piece. What I did not know; what you may not know; what she has validated, is that it is HARD to do. It is not easy to find activities that interest you, and once you do, it is not easy, after decades of being part of a "couple", to walk ALONE into a meeting full of strangers, and try to make friends. You can feel just as alone and isolated in a huge group of strangers as you do at home by yourself.
What I did not know is that it takes time, practice, and trial and error to find a group in which you feel comfortable. It takes time, practice, and trial and error to find even one new friend with whom you feel comfortable. It hurts. It is lonely. It is HARD WORK. But if you are to have any quality of life while your spouse is in a facility, and afterwards when they pass away, you have to put in the work. Some days it is easier to sit home, isolated and alone, than to make that effort to begin anew. However, if the choice is isolation and loneliness forever vs. stepping completely out of your comfort zone to do the hard work to find a better life, what will your decision be?
I do not like the position I am in. I want my old husband, my old life, and my old friends back. But, it has been decided without my input, that I cannot have any of those things. I have to start from scratch to build a new life, and it is HARD.
If, after your spouse has been placed or has died, regardless of how long or short a time it has been, you are still feeling isolated; still experiencing depression; still finding it difficult and distasteful to venture out on your own to make friends and find activities; take heart in the knowledge that you are not alone. Your task IS hard, and it will take time and patience to complete.
For those of you who are wondering how and where to start, here are just a few suggestions that may help:
Life Learning – classes of all types for the "over 50" set - Check with your local colleges for classes offered.
Meet Up – Type into Google - "Meet Up in "your city", and it will take you to the groups in your area. You will find every group imaginable meeting in your area, from hiking, book clubs, crafting, philosophical discussions, dancing, yoga, etc.
Volunteer in your community – animal shelters, hospitals, schools
Community centers
Church/Synagogue activities
MESSAGE BOARD: Joan's Blog - Isolation - Part III
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken.
Based upon the message board responses to my last blog (see below) about Alzheimer Spouse isolation, it would appear that everyone was able to relate to the topic in one way or another. The magnitude and complexity of the problem require that I break the subject into more than one part.
Please remember that these first two parts of the series deal with spouses who are being cared for AT HOME by a husband, wife, and if finances allow, some part time help. The next parts of the series will deal with the isolation of Alzheimer spouses who have placed their husbands/wives into a care facility, and those who have been widowed by the disease.
Everyone of us has felt the isolation of which I write. Being consumed by caregiving, abandoned by many friends and relatives, we have neither the energy nor the time to "make a new life for ourselves" outside of caregiving, as we are urged by every Alzheimer "expert" and professional. It is, however, imperative that we do so. This link will take you to just some of the countless articles that delineate the negative mental and emotional consequences of living a life in isolation, devoid of social contacts.
Do solutions to this problem exist? I can only give you my own opinion based upon my individual experience, and what has worked for me. I welcome other's ideas and opinions on what has or has not worked for you.
I strongly advise that in the beginning of your caregiving journey, you find a support group and make friends with the members. This is the time in your life that you need to be surrounded by those who understand what you are going through, are able to advise and support you, and with whom you feel comfortable discussing the uncomfortable aspects of caregiving and the emotional toll it takes. If you are unable to find one that is a good "fit" for you, and does not meet your needs, start your own. We have had members who have done so with satisfying results.
The following essay about friendships ( author unknown) expresses the issue of dementia isolation and socialization better than I ever could:
"We can have friends for a reason, friends for a season, and friends for a lifetime.
I used to think that only lifetime friends were valuable. That the reason and season friends were not true friends. But now I think that God sends us all three kinds of friends, and that they are all equally valuable, and can all make lasting impressions on our lives.
When dementia of any kind enters our lives, we sometimes lose friends that we thought would be lifetime friends, or at least they drift away and aren't as connected. Then we may need to look around and find friends that may enter our lives only for a specific reason, or might be friends for just a season. I have new friends that I have very little in common with, except for dealing with dementia. There is a good chance that after we have dealt with dementia to the end, our friendship will end, because we will no longer have a common bond. That is ok. We were there for each other when we needed it the most. We may find friends that enter our lives for a specific reason - a piece of extraordinary advice, a referral to a valuable resource, companionship for a certain period of time. They may come into and go from our lives quickly, but their importance in our lives cannot be discounted."
At a time when I needed them the most, my Alzheimer support group of primarily spouses, saved my life and my sanity. We socialized, cried, laughed, and traveled together. We supported one another. There was always someone I could turn to in a moment of crisis. This is what Alzheimer caregivers need for as long as they need it. In my case, after almost 5 years, I grew weary of Alzheimer's All of the Time, and slowly withdrew from the group, in search of a life and friends outside of Alzheimer's Disease.
It is imperative that you get a respite from your caregiving isolation to socialize at least once a week. Most experts advise more than a mere once a week, but I am being realistic. Once is better than none. Whether it is with other Alzheimer spouses or non-Alzheimer people, that is your choice, but human connection once a week does not sound unreasonable, is essential, and can be easily attained if you have the finances. (I will discuss lack of finances later on in the blog). HIRE SOMEONE to watch your spouse so you can GET OUT. You can use the argument – I need the money I have saved to live on "later", after my spouse is gone. If you don't take care of your mental and emotional health while he/she is still here, you may not have a "later". If you can afford it, it is well worth the $75- $100 a week (approximate estimate) to save your sanity.
What do you do with this time? Where do you go? Oh, I have become somewhat of an expert in researching people, places, and activities. Start with your church; look into senior centers in your city or town; check out classes at the local community college or craft store; check Meet Up on the Internet – If there is an interest, there is a group that "meets up" for it, whether it is a book club, yoga, writer's club, day trips, meditation, knitting, hiking, music, motor cycle riding for seniors– there is something for everyone.
What if you cannot afford to pay someone to look after your spouse, so you can get a few hours of respite and social interaction? There are volunteers who will do the job – you just have to be vigilant in finding them. Again, check with your church. Check with your community senior centers and your State's Department of the Elderly. If your spouse is a Veteran, check with the local Veteran's Administration. They have a program in which veterans volunteer for everything from "adult sitting" your spouse to mowing your lawn. If you are involved in a support group, often members will trade off staying with each other's spouses, so everyone gets a chance to get out.
I do understand, as I have been there, that often you are so exhausted, both mentally and physically, that you have no energy left for socializing. About 8 months ago, I made a rule for myself. SAY YES. Whether I feel like it or not, if someone invites me to go out to a live show, a shopping trip, a luncheon, a dinner, a weekend away, a game day, I SAY YES. Except for two times, one when I had no desire to see the movie to which I was invited, and another when I did not have the concentration necessary to read a particular book for a book club, I have said YES to every invitation, and I have enjoyed myself at each one.
The important things to remember are that isolation is detrimental to our health; humans need interaction with one another; and if you look hard enough and are resourceful enough, you will find what you need.
MESSAGE BOARDS: Joan's Blog - Isolation, Part II - Is there a solution?
Next in the series- A Different Problem - Isolation When Your Spouse is in a Facility
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken
One of the most consistent themes that resonate throughout the message boards is the total isolation of the Alzheimer Spouse caregiver. It does not matter if you are a full time, hands on home caregiver, or your spouse resides in a facility – almost all of us suffer from the despair of isolation at one point or another in our Alzheimer journey. It is often a slow, subtle process that we do not notice until it is too late. Today's blog will examine the isolation of the at home caregiver.
It is 5:30 AM. As you groggily open your eyes and turn toward your husband (Or wife – for purposes of this blog, we will refer to the husband, and call him "Bill"), you see an empty spot where he should be lying. At the same time, you hear noises coming from the bathroom. You suck in a breath, grit your teeth, and steel yourself for another day in your life as an Alzheimer Spouse caregiver.
Two hours later, after the back breaking work of cleaning the mess off of him, including hosing him down in the shower, dressing him, and scrubbing the floor, walls, and toilet, you get him seated at the breakfast table. Next comes the pill brigade, as you set out the multitude of pink, blue, white, orange, and gray tablets and capsules, while silently praying that he will take them without incident that morning. Ah, but it is not to be. He refuses to open his mouth for any of them, spewing forth a string of obscenity laced insults and verbal threats aimed directly at you. For a fleeting second, your mind wanders back 10 years before Alzheimer's Disease destroyed your world. There is a picture of two people, still deeply in love after 30 years of marriage, laughing and joking at breakfast, discussing at which restaurant you will meet to relax and revel in each other's company that night after a busy day at work. The picture fades and disappears just as quickly as it appeared.
After secretly crushing his pills and folding them into his oatmeal, you get him seated in front of the TV, hoping he will stay there long enough for you to clean up breakfast. It is now 9 AM. It is quiet. The phone has not rung yet today.
You dress quickly, then check on him in the TV room. Empty. Panic sets in when a search of all of the rooms yields nothing. You rush outside. He is nowhere in sight. You run up and down the street on painful arthritic knees and a debilitated back, both protesting in pain, as you frantically call his name. Five blocks away, you find him aimlessly wandering through a neighbor's yard. When you try to coax him home, he vehemently protests, once again hurling obscene laden verbal insults at you. An understanding neighbor comes outside and asks Bill if he may come to his house to check out his bike. He explains that he is thinking of buying one like it. Bill happily obliges, walking home with Joe, as you follow behind.
While they are in the garage, you check the phone messages and caller ID. It is 11 AM, and both are empty.
Now the shadowing begins. While you are checking for childproof door locks on your laptop, Bill is hovering over you, asking what you are doing. You patiently (?) explain that you are Internet shopping. For the next hour, he paces back and forth, never more than a foot away from you, repeatedly asking the same question. You feel your blood pressure rise and your anger seethe from the suffocation of his constant presence and questioning. The phone is still silent.
After lunch has been made and cleaned up, with him shadowing and once again asking the same questions repeatedly, it is time for errands. You have no choice but to take him along, as watching him every minute he is with you to assure that he does not wander away or cause a scene in a store, seems better than coming home to find that he has either disappeared or been destructive in the house.
You return home from errands mentally and physically exhausted from supervising him while trying to grocery shop, bank, and pick up cleaning. It is 4 PM in the afternoon; the telephone is as empty of Caller ID's and messages as it had been all day. Nothing on your cell phone either.
Bill falls asleep in his lounge chair in front of the TV. Finally – a breather for you. You can rest your eyes and pain ridden body before supper. You cannot, however, dare to fall asleep, as he may waken and……………the possibilities are endless as to the trouble he can get into. You do not want repeats of previous broken glass, flooding, burned hands, and lost item incidents.
As you begin supper, he awakens to shadow you AGAIN, asking the same questions over and over and over. You gather what mental strength you have left, and patiently (?) answer them again and again and again.
After supper is eaten and cleaned up, it is 8 PM, and the phone still has not rung. After watching a little TV, it is time to get Bill washed, changed, and settled into bed. IF you are lucky, it will go smoothly, without a hygiene accident, a fall, or a temper tantrum. Whew! An hour and a half later, he is in bed. You pray that it is for the night, as you are physically and emotionally exhausted. It is 10:30 PM, and you have been cleaning, vigilantly supervising, answering questions, cooking, and tending to Bill for 17 straight hours.
Going over your day in your head, your realize that, except for the single encounter with the neighbor and store clerks, you have not engaged in one conversation with a peer in those 17 hours since you woke up in the morning. No one has called on your home or cell phone, nor has anyone come to visit. You do not have the time or energy to call anyone, nor do you really have anyone to call. All of your pre-Alzheimer friends have moved on without you. You and they live in different worlds now. They continue to socialize, travel, play card games, attend concerts and movies, while your days are spent caring for an adult sized special needs child and all that entails, including dispensing medications, showering, dressing, shaving, combing his hair, chauffeuring (This day we examined did not include doctor visits, of which there are often multiple in a week), ultra vigilant supervision, housework, finance handling, home repairs – the list is endless. This is Alzheimer Spouse Caregiver ISOLATION. The silent phones are the testament to the separation of your worlds.
Although each day may bring different challenges, each day you face the same ISOLATION. You are alone. You are lonely. You want and need friendships in order to survive, but you are a prisoner in the Alzheimer Caregiving Ward.
Even if you have the means to hire help during the week, or your spouse goes to Day Care, your respite time is limited, as are your friendships. It is not a mentally or emotionally healthy situation.
In my next blog, we will examine what can be done to alleviate your isolation. In subsequent blogs, we will discuss the isolation of caregivers whose spouses reside in facilities.
Please post comments and suggestions on the MESSAGE BOARDS: Joan's Blog - Caregiver Isolation
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken
The blogs I have written during the 7 years of this website's existence, although chronicling my journey through my husband's Alzheimer Disease, have also served other purposes. Based upon the feedback I have received, they have educated and informed Alzheimer spouses about the disease, but most important to me, have demonstrated, through my struggles, that all of your emotions related to the disease – shock, anger, frustration, loneliness, - are shared by every Alzheimer spouse – that you are not ALONE. I have tried to impart positivity when possible, advising on the importance of activities and socialization that is appropriate for early and middle stages of the disease. I have encouraged, supported, and demonstrated through my and Sid's activities, the idea of doing, going, and enjoying as much of life as possible, while journeying through this disease. But I have also validated your negative emotions. Above all, I have told the truth. I have not sugar coated any of the difficulties of being in an Alzheimer marriage. That raw honesty brings me to the subject of today's blog – ANGER.
After 10 years of navigating Alzheimer's Disease, facility placement of my husband 14 months ago, and one health, management, and emotional crisis after another, I could not handle it anymore. I finally found a counselor with whom I "clicked", and she has been helping me keep my head above water. We have been discussing my depression and what to do about it. During our last session, we were talking about some of my more acute depressive episodes, when she suddenly asked me – What are you angry about? Huh? What? I'm depressed, not angry. She smiled, and repeated quietly – What are you angry about? She said that my type of depression ( situational depression as opposed to clinical depression) is a reaction to deep seated anger. It is the body's way of internalizing and avoiding dealing with anger.
I stopped for a minute, thought about what she asked, and felt the anger rumble from the bottom of my being. It was as if a volcano were beginning to erupt deep within me. I could feel the lava rising and finally spewing out of my mouth. I AM ANGRY AT THE WAY OUR LIVES TURNED OUT. IT'S NOT FAIR. IT SHOULDN'T BE THIS WAY. I AM ANGRY THAT MY HARD WORKING LOVING HUSBAND IS REDUCED TO A SHELL. I AM ANGRY THAT WE DIDN'T HAVE ENOUGH TIME TOGETHER. The words started coming, and I could not break the flow of them. I realized that in my effort to be "noble", and espouse the attitude that everyone gets some trauma in life, and Alzheimer's was simply what Sid and I had been dealt, I had been suppressing the anger I really felt. This suppression of anger was paralyzing me into a depression that was curling me up in bed, retreating from dealing with anything, including working on my website.
The assignment my counselor gave me until our next session was to write down everything that was making me angry. Get it out. Look at it. Own it. Accept it. The hope is that once I get it out in the open, I will be able to move on from my depression.
Since I know for sure that I am not the only one dealing with anger over what this disease has done to my life and marriage, I thought it would be helpful to others to join me in expressing their anger. Because no one but another Alzheimer Spouse can relate to what we feel, this is the place to share those feelings. Others may sympathize, but quickly tire of listening to us.
Here is an abbreviated list of why I am angry. Please add your own anger reasons on the message boards. I am hoping that knowing that others share these emotions will help us all heal.
My husband got Alzheimer's Disease…
Alzheimer's Disease destroyed my life with my husband…
I have to start all over making a new life for myself without my husband…
I am not as strong and independent as I thought I was…
We did not have enough time together…
We will not grow old together…
My husband has forgotten our wonderful life together…
I am watching my loving, strong, funny, bright man turn into a shell with no memory or ability…
I am lonely…
He worked hard and loved his family –it's not fair that he ended up like this…
These are just some of the reasons I am angry. Now it's your turn. Share your reasons for being angry with us on the Message Boards: Joan's Blog – Why are you angry?
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken
My sporadic blog writing is due to two factors. The first is that the constant phone calls, meetings with multiple groups of care workers, fighting to be heard, and Sid's overall decline have left me sapped of energy for anything else. The second is the emotional toll this is taking on me has made such a jumble of my thoughts that I have been unable to write anything coherent. It is time to update you on what has been going on for the last 3 weeks. As always, a lot of what I am writing is for you to add to your own knowledge, so you will be prepared with as much information as possible if you encounter a situation similar to mine.
I want to make it perfectly clear that I have NO complaints concerning the care and concern my husband has received from Hospice. All of the Hospice workers from CNA's to social workers to nurses to administrators have been nothing but well educated, professional, and dedicated.
Although basically designed to provide the same level and type of care, Hospice rules appear to differ from State to State. It is also important to understand that Medicare pays for Hospice, and Medicare has tightened the rules for eligibility because of the expense and previous abuse of the system. Therefore, the Hospice administrators and nurses who evaluate patients are under pressure to adhere strictly to the guidelines for admission to, and release from, Hospice as set by Medicare. These guidelines have very specific criteria for individual diseases, and allow no leeway or interpretation. Each patient is re-evaluated every 3 months.
Regardless of the fact that my husband lost 19 pounds in September; 19 pounds in ONE month; has significantly declined in his mental capacity, including the ability to express himself, understand where he is and why; has become so restless and fidgety that his calming medication had to be increased; and no matter what is done with the anti-rage medication, he has become increasingly combative, is sleeping more, and has lost his appetite, Hospice has determined that he has "improved" since his initial evaluation, and therefore is no longer eligible for their services.
As has been my complaint since Sid went into the nursing home 14 months ago, I was not consulted, nor were my observations taken into account. I was called and told of the decision. My counselor arranged a meeting for me with all the parties involved, hoping to avoid a complete emotional collapse on my part.
During the meeting, I explained to everyone that Hospice initially evaluated Sid two days after he was released from the hospital. He was in the worst mental, physical, and emotional state possible, due to the trauma of the hospital stay, as well as the new heart problems. Therefore, his symptoms qualified him for Hospice Care. Of course, going by that baseline, he has "improved" since then. It took about two weeks, but he finally settled back into the NH routine, although he no longer knew where he was or why, as I have previously stated. I went on to explain that he has dramatically declined since BEFORE his hospital stay to NOW, citing the symptoms I described above ( dramatic weight loss, etc.) Although they agreed with me on those points, they scored him at the end of Level 6, which does NOT meet eligibility criteria, whereas initially they scored him at the beginning Level 7, which DOES meet eligibility criteria. Nothing else matters, including taking into account that the reports of his condition by the nursing home nurses differed widely from one to the other due to a litany of revolving nurses at the nursing home, most of whom were not familiar with him.
This next part is also important for your future reference. I was informed that I could appeal their decision to an outside arbitrator. Hospice services would continue until the arbitrator made his/her decision. If the decision went in my favor, nothing would change. He would remain on Hospice services. HOWEVER, if the decision went against me, I would be responsible for ALL Hospice charges from the time I signed the request for an appeal until the decision was made. $$$$$$$$$
At that point, I made my own decision. I had a pre-scheduled care plan meeting with the nursing home staff that same afternoon. I told the Hospice team that if I could get a written order for "palliative care only" from the nursing home, I would not appeal Hospice's decision. I wanted assurance from the nursing home that Sid would not be transported to the hospital if he had a crisis, nor would any aggressive measures be taken to treat him for any condition. The only thing left for me to do for him is to see that he is calm and peaceful, as pain free as possible, and that this nightmare is not prolonged unnecessarily. Hospice, being familiar with facilities, was sure that the nursing home would honor my request.
Another However. They told me that this happens all of the time – that patients are evaluated at their worst, show improvement, are discharged from Hospice, decline again, are picked up again, are reevaluated, discharged again, and on and on. I said that there was no way I was going through this repeatedly. If the nursing home agreed to, and followed through on, "Palliative Care", I would accept it and not play musical chairs with Hospice.
At the afternoon meeting with the nursing home staff, they not only agreed to my request, but by the time I returned to Sid's unit after the meeting, the doctor had already been called, and he had changed Sid's orders to "palliative care only". I also had a meeting with the head nursing home administrator to discuss the situation. So far, everything seems to working as it should.
Sid continues to decline. He no longer asks for me when I am not there; he barely responds to me when I am there, although he knows who I am; his aggression is still not under control, nor is his restlessness; he cannot find the words to express himself; and he often makes no sense when he does speak. He has very little appetite. He is angry and confused. And I am helpless to do anything about it except watch the dismantling and destruction of a once tall, strong, vibrant, loving man. A peaceful death is all I can fight for, and I will until his last breath.
What I want my readers to take from this blog is an understanding of how Hospice works:
If you are caring for your spouse at home, you will have more control over how the situation is handled. You will be minus an entire team of revolving nursing home personnel with which to deal. You will be working in tandem with Hospice, their doctors, nurses, and CNA's. The same admittance and discharge criteria will apply, but you will have only one layer of bureaucracy to navigate. As always, I hope my experience has informed and helped those of you who are facing, or will be facing this issue in the future.
MESSAGE BOARDS: Joan's Blog - Hospice Musical Chairs
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken
Before I begin, please allow me to take a moment to explain something about Alzheimer's Disease. Those of us dealing with it are aware of this aspect, but I would like to wake up the rest of the world to the hidden, lesser known, dark facet of what the general public views as a "memory disease", and that is violence. It is not a "memory disease". It is a BRAIN DISEASE. It destroys every part of the brain, piece by piece. Although each patient is different, and not every patient will experience every symptom, many fall victim to aggression and violence. As their brain deteriorates, they may lose the ability to communicate what is bothering them; their perception of threats may become skewed and exaggerated; their confusion may increase. Imagine perceiving a threat, being unable to communicate your fear, and being confused about what is happening around you. When this occurs with a dementia patient, they often strike out verbally and physically.
Coincidentally, while I have been dealing with this issue with Sid for the last month, I have noticed that the message boards have been filled with members facing the same problem. Because of one crisis after another with Sid, I have been unable to adequately respond to message board posts.
This blog will give you a glimpse of what I have been facing, and how I have dealt with it. Perhaps my experience will help you get through yours.
Each time Sid experiences a downturn or crisis during this last leg of our journey, I think that it could not possibly get any worse, but I am proven wrong time and again. Most recently, our situation, as I mentioned above, has mirrored the current discussion on the message boards relating to handling (mishandling may be a better description) of aggressive issues.
Hospice determined that my husband is in the end stages of Alzheimer's Disease. He has become extremely restless. Moving back and forth in his wheelchair has not been a problem, as the Alzheimer unit of the nursing home is locked and designed for pacing and wheeling. Constantly trying to get out of his chair has been a problem, as he is unable to walk on his own, and has fallen once. In addition to the restlessness, he has become more physically abusive to the staff and anyone in his path. Almost every night, I was getting a phone call informing me of another incident of hitting, punching, or kicking.
If your spouse is in a facility, you will recognize my frustrating, stressful situation of trying to get all professional parties involved in Sid's care together in one place to discuss how to handle the medication designed to alleviate his aggressive symptoms. Even if your spouse is at home, it is still just as difficult to get all parties together and on the same page related to care and medication. In my case, there was the Hospice doctor, Hospice nurse, Nursing home Director of Nursing, unit nurse, and outside contracted psychological service's doctor and psychological nurse practitioner. Nowhere in that list do you see – WIFE. No, all of these different professionals played phone tag with one another, changed his medication, then called me after it was done to tell me about the decisions and changes. I know that each situation is different, but I am sure you recognize some similarities to your own experience.
As you can imagine, this did not go down well with me. I expected to be part of the team; I expected to be consulted BEFORE changes were made. It is my right as Sid's wife, advocate, and the person who cares most about him in the world, to be part of the decision making.
The first day I went to see Sid after the medication change, I literally almost fainted. He was slumped over in his wheelchair, completely unresponsive, unable to talk, eat, or lift his arms. I fed him by opening his mouth and pushing the food into it. When I finished feeding him, I was shaking, holding his head, and sobbing. How did we ever end up like this? How?
The desk nurse, who can only do what she is ordered to do, was sympathetic, and told me that the director of nursing was ordering Hospice to reduce the medication. It took days of relentless phone calls by me to all parties involved, a scolding by one of the professionals (NOT a Hospice professional) that basically I should stay out of it, and let them do their job, constant insistence on my part that we all meet together, before I finally had a meeting with the main parties involved. I stressed that I wanted to be part of the TEAM; that I wanted to be part of the decision making; and that I wanted to be kept informed on a weekly basis with a direct phone call from at least one of them.
We are now going on the 4th week of medication musical chairs. He is no longer semi-comatose, and is eating on his own. However, his aggression is creeping up. Our goal is to keep the aggression down, without drugging him into a stupor. I have been told that due to advancing dementia, it may not be possible to completely eliminate the aggression.
This situation has not played well with my emotional health. I cannot help looking back at who we were as a couple, who he was as an individual, without dissolving into tears and depression at what we have become.
So I continue on. I make phone calls; I advocate for him; I insist on meetings; I visit him and hold the once warm, strong hand that has calmed, supported, and held me almost my entire life. There does not seem to be anything else I can do at this point.
To those of you who are dealing with the same aggression and medical frustrations, I can only urge you to fight for what you feel is best for both of you.
MESSAGE BOARD: Joan's Blog - Fighting for our Spouses
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JOAN'S NOTICE: SEPTEMBER 22, 2014 - As I navigate this last leg of our Alzheimer Journey, there is one crisis after another with which I must deal. It is taking all of my time and energy, which is why I have not written any blogs in almost 3 weeks. I was in the process of writing a new one this afternoon when the phone rang - Sid's unit nurse reporting another issue, although thankfully, this one was not serious. In between the phone calls to and from unit nurses, hospice nurses, pshychological personnel, and now, a lightening storm, which necessitates the shut down of my computer, I do promise that a blog is forthcoming. Thank you for your patience and understanding.
About three weeks ago, an event occurred in my life that was so mind altering, I could actually feel a complete seismic shift in my entire attitude. It completely changed the way I view myself and my new involuntary single life .
Three months before this occurrence, I saw a concert advertised that I desperately wanted to attend. It was in Orlando, which is a two hour ride from where I live. That would mean, besides going to the concert, I would have to get a hotel room, because there was no way I could drive that distance late at night in the pitch black darkness. I can barely drive down the street in the dark. I was so excited about getting the opportunity to see Blake Shelton perform, as I am a huge fan. Unfortunately, none of my friends shared my enthusiasm, and I was met with a chorus of resounding "NO's" from whomever I asked. I was so disappointed because it was unlikely that his tour would be that close again. I searched and searched the database in my head for someone who would consider going with me, and came up empty.
When I mentioned it to my sister and my son, they both told me to go by myself. What? I have never gone to a concert in my life by myself. One does not go to a concert by one's self. The daytime drive to Orlando did not bother me, as I have done it many times. Staying in a hotel by myself did not bother me. I have done that many times. But going to a concert alone? No, that is not something people do. Concert attendance is for couples, friends, and groups, not singles. Sid and I attended countless concerts during our years together. We went to concerts we both wanted to see. I went to concerts I did not want to see to please him, and he went to concerts he did not want to see to please me. We went with each other and we went with friends. We enjoyed most of the concerts, walked out on a few of them, and saw some singers multiple times. But we certainly never went alone. What fun would that be?
As the weeks went by, I felt more and more disappointed. I wanted to see Blake Shelton, and I was very upset that I could not go. Then it happened. The seismic shift in attitude was so intense, I could feel the earth move under my feet. Suddenly I said to myself – I want to go to this concert. I want to go. ME. What do I mean – I can't go? Why should it matter to me that other people do not want to go? Why should what I want to do depend upon what someone else does or does not want to do? Why should I be denied the opportunity to see a concert I want to see just because someone else did not want to see it? It was at that moment that I truly started my new single life. It was okay for me to attend an event because it was what I WANTED TO DO, and since my husband was no longer able to participate in this part of my life, what I wanted to do was really all that mattered.
Instead of being happy that I was moving forward with my life, I was sad and angry that he was being left behind. No matter how I viewed the situation, it was not fair that my beloved husband of 44 years was sinking deeper into Alzheimer's Disease, and I was moving forward without him.
However, the sadness and anger did not stop me. I bought myself a ticket, booked a hotel room, and went to Orlando. By myself. I enjoyed every minute of the 4 hour show, which included two opening acts and a talented emcee who played his own music in between acts. After two hours of foot stomping, rollicking music, Blake Shelton came on stage and performed by himself for two straight hours. I was in Heaven. Literally, as the only ticket I could get at that late date was a resale so high up in the rafters, I was dizzy.
When it was over, I will admit that I felt lonely leaving the arena by myself. I did not like getting into the car and driving back to the hotel alone. Yes, I absolutely would prefer to go to a concert with my husband. Since that is no longer possible, and will never be again, I would prefer to go with a friend, but I can assure you that being alone will never again stop me from going to a concert I want to attend.
What my solitary concert experience taught me was that I am, although not technically a widow, a single woman who is in charge of her own destiny. I do not need to depend upon others to be happy. I can and will enjoy myself on my own terms. This was not an easy, quick realization. It took years, so if any of you are trying to reinvent your lives as a single, do not expect it to happen overnight. As with everything related to learning to live with Alzheimer's Disease, it will happen on your own timetable in your own way. I also learned that, for my own mental health, I NEED to find enjoyable activities to take me away from the illness, depression, and near death of the nursing home in which my husband has been sentenced to live by the Alzheimer Devil.
MESSAGE BOARD: Joan' Blog - A Seismic Shift
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©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
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Do caregivers get a rest on Labor Day? Probably not. It is a 24 hour a day, 7 day a week job, unless you are fortunate enough to have paid help or even more fortunate to have unpaid family help. Whatever the case, I hope you do find some time during this weekend to rest. My own plans are rather surprising and different for me. Please be sure to tune in Monday to read the blog about my newest "first".
I am not very good at this. The "this" of which I write is watching my beloved husband of 44 years, who is now under Hospice care, slip deeper and deeper into the abyss of Alzheimer's Disease.
When I visit with him, although still happy to see me, he now has little affect, is perpetually fatigued, and has difficulty organizing his thoughts enough to be able to answer a question coherently. He is so exhausted that most afternoons he asks to be put into bed, so he can take a nap. When settled into bed, he looks over at me with sad eyes and tells me how much he loves and misses me. With all the strength I have left in me, I hold back the tears and quietly tell him that I love and miss him too. Two days ago, as I was sitting by his bed, I added – But I can't take care of you anymore. To my amazement, he softly said – I know. The countless pieces of my already shattered heart were pulverized into dust when I heard him speak so lucidly. Somewhere inside his Alzheimer imprisoned brain, my Sid still exists. It was my Sid who spoke those words, not the angry, irrational, confused person Alzheimer's Disease has left in his place. It cuts deeply into my soul to glimpse a tangible piece of who he used to be. Is it a welcome relief or another jagged knife piercing into a wound that does not heal? Would it be better to never see a piece of the old Sid than to catch a fleeting glance of who he was and will never be again? I have no answers to these questions, only deep emotional pain.
Whether asleep at night or awake during the day, my head is filled with nightmares of the total devastation I will experience when he takes his final breath. I cannot imagine my world without him in it. I cannot imagine my husband being dead.
Conversely, my rational mind wants this pain and suffering to be over for him. No one deserves this staggeringly ghastly disease that destroys both patient and caregiving spouse.
Why is this so difficult, I ask myself. After all, I have been doing this for over 10 years now, haven't I? I have endured his personality changes, mood swings, temper tantrums, violence, confusion, forgetfulness, misunderstanding, loss of cognitive function, loss of physical abilities. I have read all of the books. I have read all of the "end stage" stories you have shared on the message boards. I know that Alzheimer's Disease takes no prisoners. It is a long, slow, torturous death, but death is always the outcome. None of my knowledge or experience is helping me now. I am no good at this.
In the midst of trying to cope with the impending death of my husband, I have been trying to take the expert's advice and build a single life for myself. I have been looking for activity based groups to join, events to attend, people to meet. I have been repeatedly asked by well meaning friends if I have made a decision on moving "after" and where that will be.
It has all been too much for me, sending me into a deeper well of depression than I have been. In desperation, I reached out to the Hospice Social Worker, telling her that I cannot do this; I don't know how to do it; I don't know what kind of help I need, but I need help. She told me that Hospice offers a support group (I've had my fill of support groups – I knew that was not what I needed). They also offer one on one grief counseling. That was it! That is what I needed. I did not "click" with the psychologist I saw two years ago, and I found her to be minimal to no help at all. But I was willing to give the Hospice counselor a try.
My first meeting with her was on Monday of this week. I found her to be warm, nurturing, knowledgeable, understanding, and extremely helpful. In a little over an hour, she had me feeling better than I have felt in years.
Did she give me a magic bullet that I can share with you to help ease the pain of those of you who are at this stage with me? No, she did not. We talked about feelings of guilt, conflict in wanting him to stay and wanting this to be over, love, loyalty, my right to a life, trying to do too much at once during a time of "limbo". In the end, I was given a coping prescription until I meet with her again in two weeks. She encouraged me to stop dwelling on what is to come; to stop making myself sick about the inevitable, and just live one day at a time. She strongly suggested that I do not make Sid the entire focus of every day. She said that I should make sure he is well cared for, visit a few times a week, but do not obsess over his fate. Get up in the morning, and think -What am I going to do TODAY – for ME? She gave me a list of 3 groups she thought had activities that would interest me, and urged me to try each at least once.
I am making an extreme effort to follow her advice, particularly the part about not obsessing and dwelling on what is to come. Relieving myself of that burden has already helped me feel better.
If any of you share my stage of the journey and/or my feelings of conflict and depression, I hope this blog has been of some help to you. If you do have Hospice social workers available, I urge you to utilize their services. These people "know their stuff".
MESSAGE BOARDS: Joan's Blog - Desperately Seeking Help
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©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken
This blog was prompted by a recent discussion – "Looking for Placement – Help" on the Message Boards concerning finding an appropriate placement for our spouses with Alzheimer's Disease.
Let me begin by saying that this is a complicated matter. There are federal guidelines regulating nursing homes and assisted living facilities, but generally each State has different rules and regulations. You will have to find out the rules in your own State on your own or with the help of a Geriatric Care Manager (more about GCM's later in the blog).
I am not an expert in this field, but I have had experience with nursing homes and Assisted Living Facilities in Rhode Island, Massachusetts, and Florida. I would like to offer you some basic information that is very important to understand before you look for placement.
Criteria for qualifying for Assisted Living:
Your spouse must be able to transfer with some assistance (no lifting) from the bed to the walker; from the chair to the walker or wheelchair. Some Assisted Living facilities have advanced licenses that allow them to be more flexible in their ability to accept less mobile residents, but you must find out EXACTLY what they are willing to do BEFORE you place your spouse or you are going to be called and told to remove them because they are too difficult for the staff to handle physically.
Violence and Running -No Assisted Living Facility will keep a violent or habitual "escaper". Understand this in advance if your spouse has such tendencies. Many Alzheimer Spouses are so stressed, exhausted, and anxious by the time placement is upon them that they do not clearly understand the restrictions and are later surprised to be faced with eviction.
Diabetics -No Assisted Living Facility with which I have dealt will do daily blood monitoring of diabetics. Nor will they administer insulin. The reason for this is that a "skilled nurse" is required to take blood, even if it is only with a finger stick, and ALF's do not have the staff for that type of work. ALF's have what they term, "no stick" policy. If your spouse is a diabetic, you will be told that you have three options. The first is that the staff will "remind" your spouse to take his/her own blood at the designated times, and administer his/her own insulin. The second is to hire your own nurse to come in and take the blood and administer insulin if needed. The third is for you to come at the designated times to take the blood and administer insulin.
Doctor Visits – Although all facilities have vans with which to transport patients to doctors, YOU must choose your own primary care and specialists. No medication; no tests; no changes; nothing can be done to your spouse without the primary doctor's approval. If there is a crisis, your spouse will be transported to the nearest ER at your expense.
Payment Responsibilities
No matter the outward appearance, from basic to ultra glamorous, the one most important fact to know about an ALF is that it is an APARTMENT that you MUST PAY FOR ON YOUR OWN. It is no different than moving your spouse from your home or apartment to a different apartment. Rents vary widely from State to State, from facility to facility. I have encountered rents as low as $2000 a month and as high as $10,000 a month. You must provide the furniture, every single personal item from toiletries to adult diapers to talcum powder. When your spouse runs out of toothpaste, deodorant, personal wipes and latex gloves (used by the staff to "assist" your spouse), YOU must provide replacements. It is possible that some of the more expensive ALF's provide gloves for the staff, but I have not encountered one. Actually, these items may appear in the bathroom, and you may THINK they are being provided, but rest assured, they will appear on your monthly bill.
Level of Care: All Assisted Living Facilities have a payment schedule for level of care. There are usually four levels, and the fees are based upon the amount of care needed and the amount of medications dispensed. The following are examples. Amount of money and type of care provided are samples from what I have encountered, but it is VITAL that you find out what level on which your spouse is placed and the fee for that level. Check back often, because as your spouse declines, the level of care rises as does the price.
Level One - $250 per month IN ADDITION to the rent. Usually minimal to no transfer assistance and a minimum amount of medications – 2 or 3
The amount of money per month increases with each level. In the Assisted Livings I have dealt with for my parents, then my father alone, the maximum fee for the highest level of care (Level Four), was $1200. Remember, that is in ADDITON to the rent.
Example of monthly costs:
Rent - $3500
Level of care - $900
Personal Items (diapers, wipes, etc) -$250
Total: $4650
MEDICAID DOES NOT PAY FOR ASSISTED LIVING. DO NOT BE FOOLED INTO THINKING IT DOES. Medicaid will pay for a portion or all of "level of care" if you qualify, but WILL NOT PAY FOR RENT OR ANYTHING ELSE.
However, Long Term Care Insurance DOES pay for Assisted Living. Not without a fight, of course. But they will eventually pay after many evaluations by their own "specialists".
So what are you getting for your money? Assisted Living means exactly what it says – Assisted. The resident does not have to cook or clean. Usually 3 healthy meals are provided in the dining room each day. The apartment is cleaned weekly. The resident is given assistance with shaving, bathing, and dressing. But remember, the more assistance needed, the higher the level of care fee. Activities are provided during the day, and often there are "field trips" to restaurants, movies, theaters.
Memory Care Units in Assisted Living Facilities
This is my personal opinion, based upon years of observation in a variety of facilities. I would NOT consider placing my spouse in an ALF that did not have a separate Memory Care Unit, no matter what the Sales Manager tries to tell you about how appropriate their regular facility is for Alzheimer patients. These memory units are locked and staffed by professionals who have had at least some training in dealing with Alzheimer patients. The activities are based upon research related to Alzheimer's Disease, and are geared specifically to the needs of those with Alzheimer's Disease. The staff knows the basic tenets of Alzheimer's Disease – divert and distract, rather than argue. The assistance provided is usually of a higher level than in the regular section of the ALF. You will be billed accordingly.
This is a completely different animal, as the saying goes. In order to qualify for a nursing home, your spouse must be deemed by a physician to require around the clock "nursing care". I cannot tell you with certainty what all of the criteria are, but I can give you probabilities. If your spouse is immobile, and needs lifting; is diabetic and unable to care for himself/herself; or has another debilitating medical condition, they may qualify for nursing home care.
Payment Responsibilities
Unlike an ALF, you do not have to provide ANYTHING, except clothes and whatever personal items you wish, such as pictures, a portable radio, magazines. All furniture, toiletries, diapers, wipes, gloves, and in our case, even a TV, are provided by the facility. The costs range from $6000 to $12,000 per month. MEDICAID DOES COVER NURSING HOME CARE, but they will fight it at every turn because of the cost. Usually, if your spouse's physician writes a strong enough recommendation, Medicaid will cover it, minus your spouse's social security check. (Spousal Diversion programs allow you to keep enough of that check to cover your shelter expenses).
If you are paying privately, the restrictions for admission are not as stringent as when Medicaid is involved. The simple fact of the matter is – Money talks. If you can pay, and the doctor says nursing home care is needed, your spouse is in. I speak from experience, as I know how I was treated at different facilities when I was looking for placement for my father, who was private pay, and how I was treated when looking for placement for my husband, who is on Medicaid.
The problem with most nursing homes is that they DO NOT have separate locked Alzheimer Units or specialized activities for Alzheimer patients. Every State and every facility is different, and this is beginning to change, but most generally, Alzheimer patients are placed within the general population of the Nursing Home. I was lucky to find one that was Medicaid Approved and had a separate locked Alzheimer Unit.
When your spouse enters a nursing home, you must choose one of their staff doctors as his primary physician. These doctors assume all care for your spouse, and see them on a regular basis. In our case, the doctor sees Sid on the average of once a week, but often he checks on him when he is seeing other patients. All blood tests, x-rays, and other medical tests are done on the premises.
If you have the funds, I HIGHLY RECOMMEND hiring a Geriatric Care Manager to do the leg work for you. They are specialists in their field. If you understand the guidelines as I have written them, you will be equipped to ask the right questions, so he/she can find you the most appropriate placement for your spouse. As with hiring any professional, I would go with recommendations from people who have used that professional and been satisfied with their work.
What I have outlined is basic, simple, and different in every State, but it will give you a starting point and questions to ask when researching a facility for your spouse. One of the most important facts to keep in mind is that every State and every facility is different. I have given you my experiences and knowledge gained from three different States and 10 different facilities.
MESSAGE BOARD: Looking for Placement - Help
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©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken
It was October, 2006. "He has Alzheimer's Disease." From the moment the neurologist specializing in memory disorders uttered those words to me, after 3 years of frustration and misdiagnoses, I prepared myself for what was ahead. Sid and I had just moved to Florida to "semi-retire". Instead of planning travel adventures and seeking part time jobs, we went to a Certified Elder Law Attorney to plan our "advance directives". In normal speak, that means that we had living wills, health care powers of attorney, durable powers of attorney, and our wills drawn up and signed.
I then went about learning everything I could about Alzheimer's Disease. I read all of the books that described what was ahead for Sid, how to handle the behaviors that the books said he may or may not exhibit. I immersed myself in the Alzheimer World, advocating, learning, teaching, starting this website, joining a support group, and becoming part of a social group of Alzheimer couples.
For years, as an Alzheimer Spouse, I endured the unimaginable – the gentle, loving, kind man I married turning into a violent, rage filled stranger. I was dumbfounded. Alzheimer's Disease was all about memory loss, wasn't it? That is what TV ads and articles had led me to believe.
There was cognitive decline – the electronics whiz on whom I depended to hook up, fix, understand, and explain every piece of equipment in our house was having difficulty working the TV remote control. The man with whom I had discussed and debated politics for 40 years could not explain why he did not like a particular politician's stand on issues – he simply said – "He's an idiot". When queried as to why, he answered, "He's an idiot."
Violent mood swings became the new normal in our house. In the early stages of the disease, he often recognized, 12-24 hours after an irrational rage filled rant, that he had been unreasonable, and he sadly and quietly apologized, only to erupt in another irrational outburst minutes later. I felt like a battering ram for the Alzheimer Devil. What was this coming at me from all angles? Alzheimer's Disease was all about memory loss, wasn't it? That is what the TV ads and articles had led me to believe.
The worst part of trying to deal with this monstrous disease that had taken over my beloved husband was the advice I was given by my social worker. Do not discuss or argue with him. Divert his attention, distract him, and handle all situations on your own. What? Not discuss and compromise as we always had? But, I argued with her, if I did as she asked, I was destroying the very foundation of my marriage. She informed me that I either learned to deal with him differently than I had for the last 3 decades of our life together, or I was destined for constant battles, stress, and anxiety. The disease, she told me in what I thought was rather harsh terms, was going to take my marriage and my husband as I had known them, and I was going to become more and more a caregiver and less a wife. ???????? What was she talking about? I could not accept it. As those of you who have followed my blogs know, I fought against her advice; I fought for my marriage and husband; I fought until I almost died, and finally, Alzheimer's Disease won. It did take my marriage and husband, and I did become a caregiver rather than a wife.
Still, through it all, including his placement in a nursing home one year ago, I continued to assume that his decline would be slow and steady, and when the end was near, I would be prepared.
Ah, but Alzheimer's Disease is sneaky and cruel. One day last month, he was as "healthy" as could be described under his circumstances. He was wheelchair bound, physically disabled; was being treated for diabetes, high blood pressure, severe knee and back pain, and a host of other ailments. But he was still considered "stable". The next day he was rushed to the hospital for an uncontrollable high heart rate, where he remained for 3 days. On the fourth day, he was sent back to the nursing home on medication to control his heart rate, and on the next day, he was under Hospice care.
Suddenly, I am being told by the Hospice nurse that he has entered the end stage of Alzheimer's Disease, is declining quickly, may remain in that stage for 6 months to a year, or a sudden heart issue could take him at any time. I am being asked the name of the funeral home to call when the time comes. I could not have been more shocked or unprepared if I had been hit by a bolt of lightening.
My Sid could die at any moment. NO! That could not be possible. NO! I was shaking from head to toe. I could not think or function. How could this have happened so fast? How could I face his death? I could not. I was paralyzed with fear and grief, a condition in which I remained for the entire month of July.
The next day, my dearest friend drove two hours from her home in Miami to be with me. I was close to hysterical, and barely functioning. Two days later, my sister arrived from Chicago to spend 4 days with me to help me make arrangements. I never could have done it alone.
He is perpetually tired and confused. He often wakes up in the morning not knowing where he is or why he is there. Although he usually snaps back to understanding his routine, one night last week, he had no idea that he slept there, and told the nurse to call me to tell me that he was coming home. He did not know, until she showed him, that he had a room and bed there.
Overwhelming sadness and disbelief permeates every cell of my being as I hold his hand while he nods off in his wheelchair or when he tells me how confused he is. At this point, I have to question whether he would be better off if he slipped into the oblivion of Alzheimer's Disease.
I have told my friends and relatives – I understand that I am not the first spouse to go through this; I will not be the last. But when it is happening to me, I do not know how to handle it. I feel as unprepared as if I had never studied a word about Alzheimer's Disease.
This explains why there have been no blogs, and very little of my presence on the website in July. I have been enveloped in a fog of disbelief and grief. The woman who, for the last 7 years, has tried to educate, inform, and support others on this Alzheimer Journey, fell apart when it was her turn to face the approaching end of her Alzheimer journey.
I am going to call the Hospice social worker for counseling, but I am turning to you, the wisest and most knowledgeable group I know for advice on how to get through this period.
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©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
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No blogs were written in July 2014, because of a health crisis with Sid that sent me reeling. On July 6th, I visited him, and he seemed as "normal" as he has been, given the circumstances. At 6 PM on July 7th, I received a call from the nurse at the Nursing Home. Sid's heart rate was elevated; they could not regulate it; the paramedics were on their way.
I raced out the door, and was at the hospital less than 5 minutes after Sid arrived. The security guard would not let me into the ER examining room, explaining that I would be in the way while they were "working on him". I still did not realize the gravity of the situation, as I thought he meant that they were taking his vitals and getting him settled. Almost a half an hour later, after much hand wringing and pleading by me, the doctors said I could come in.
Sid was in a hospital bed hooked up to monitors. looking none the worse for wear, in my opinion. However, the doctor informed me that he was being diagnosed with Atrial Fibrillation; they had to try two different medications before they were able to stabilize his heart rate; and he was being admitted.
To make a very long story as short as possible, he was in the hospital for 3 days, readmitted to the nursing home on the 4th day, and on the 5th day was evaluated and accepted on Hospice Care.
I was so shocked and hysterical that I could barely function, never mind write blogs. Hospice was asking for the name of our funeral home, and I had not even made any arrangements. My sister flew from her home in Chicago to my home in Florida two days later to help me make the arrangements.
It is now almost the end of August. Hospice cannot give me a time frame, but they do feel that this will not go on for "a long time". Sometime this week, I plan to discuss "time" with the Hospice Nurse.
I pulled myself together enough in the month of August to begin writing blogs again. They focus on us coming to the end of our Alzheimer journey and my struggle to cope with it.
Those of you who are just entering this Alzheimer Journey will most likely strenuously disagree with me. Many, but maybe not all, of you who have been traveling this road for a long time will sadly, resignedly agree with me.
When my husband and I first received the Alzheimer diagnosis, we clung to each other, promising that we would weather this storm together, that I would always take care of him, and that we would always love each other. We were strong. We had been through other difficulties in 36 years of marriage. We would get through this together. What we could not know then, 8 long years ago, was that Alzheimer's Disease is a Category 5 Hurricane that rips through the life of the patient and caregiver, leaving destruction, devastation, and permanent life changes in its wake.
Today, I want to focus on what was to me, and may have been to you, the most surprising and sorrowful aspect of that destruction and change – married love. Alzheimer's Disease alters married love. I did not want that to be true. I fought against it with every breath I took. But in the end, the truth is – Alzheimer's Disease alters married love.
In the Relationship Breakdown and Repair section on the left side of this website, I explain that we married our spouses for particular reasons – "Let's face it – we all married our spouses for particular REASONS. We didn't just spin a wheel with names on it and choose one. We chose them for their special characteristics that we loved. In that person we chose as a life partner; maybe we saw strength, humor, intelligence, warmth, and kindness. Maybe you liked the rebel, the outsider, the wild one. It doesn't matter. You had reasons for your choice."
Unfortunately, as Alzheimer's Disease advances, it takes with it the personality, cognition, understanding, reasoning, and memories of our spouse. When they no longer possess the special characteristics with which we fell in love, how can our feelings not change? Where there was once vital and exciting conversation with a peer, there is now minimal talking, little comprehension of ideas and discussion topics, and blank stares. Where there was once the enjoyment of shared activities, whether it was a Scrabble game, a day at the beach, a trip around the world, dancing, museum hopping, movie going, enjoying a live theatre presentation, there is now, due to his/her diminishing abilities, very little you can do together. Where there was once shared responsibilities of household duties ( finances, yard work, home maintenance, cooking, cleaning), everything now falls to you, the caregiver. Resentment and exhaustion on your part soon follow.
Passion and intimacy will eventually be replaced by the necessity for you to fulfill your spouses' personal hygiene needs – showering, dressing, and toileting. It is a brutally honest fact – the desire for sexual intimacy quickly dissipates in the face of changing adult diapers and cleaning the accompanying mess off of walls and floors.
When all these changes occur, so does the married love you once shared. It cannot be otherwise. The person with whom you stayed in love for decades is no longer with you. He/she has been replaced by a special needs child. You will love that child and care for him/her, but there will no longer be romantic love. That was one of the most difficult aspects of this miserable disease's consequences that has wrought Hell with my emotions.
I mourn the loss of that love and the loss of the man who was the recipient of that love every day that I breathe. Although I grieve deeply for both, I have finally come to accept that this loss is part of the price of Alzheimer's Disease. This is a fact that no one but an Alzheimer Spouse can understand.
MESSAGE BOARDS: Joan's Blog - Alzheimer's Disease Alters Married Love
Feedback to firstname.lastname@example.com
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken
For Your Spouses with AD - A Resource of Their Own - A wonderful new website for PWD( Persons with Dementia) designed and run BY PWD.- June 2, 2014
Anger - Expressing my anger and outrage at what Alzheimer's Disease has done to my once smart, capable husband - May 12, 2014
On our Own Timetable - How we must adjust to whatever circumstances in which Alzheimer's Disease places us on our own timetable, not the timetable others set for us - March 12, 2014
In our Own Way - How we must adjust to whatever circumstances in which Alzheimer's Disease places us in our own way, not how others think we should- April 2, 2014
The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.
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It's always been a little intimidating, having all these doors open. It can be a struggle to find and listen to the small voice of my intuition when I'm surrounded by so many good suggestions and opportunities. I need to make sure that I'm growing at a sustainable rate, that I don't overcommit or burn myself out, that I don't lose myself. I need to make sure my priorities are right, and that I actually follow them.


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help!!!!! - page 2
I took my second practice test for reproductive. I made a 59. I am seriously thinking I need to reschedule my oct 10th date and study more. Any advice is apprectiated. I made a 60 on the first practice test.... Read More
- 0Oct 24, '09 by agldragonRNQuote from nursingforever35yay....congratsi just wanted to say thank you to everyone that has always given me advice since i have come to this forum. i passed reproductive today. i just thank god. two more to go. wow, what a journey!
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Published: 00:00 GMT Standard Time - Friday 19 January 2007
Under siege: Iraq's Christians face struggle for survival
Country/Region: IRAQ
In regions afflicted by war, violence is only part of the problem that ordinary families face. Behind the bombs and bullets lies a second battle, the battle to make ends meet. In the second of a series of special reports, Barnabas Aid highlights how the war in Iraq is affecting the ability of Iraqi Christians to provide for themselves, their families, and their futures.
Dora, Baghdad: Yousef * swept the last of the day's cuttings from the floor, leant the broom against the wall and looked at the clock. Soon he could close up his barber shop in this mixed Sunni - Shia neighbourhood and head home to his family. Through the small and dusty window the street scene outside was normal for this time of day: traders packing up; children playing noisily in the road. Dusk.
Minutes later Yousef would be lying on his back in a pool of blood and broken glass in his shop. The Sunni insurgents who attacked him left him beaten, one of his legs broken and his back badly damaged. It was a warning; in a salon not far from Ws, the proprietor lay dead.
Christian workers targeted
Yousef's only "crime" was running his business - cutting hair and trimming beards. One of the motives behind the attack was to stop him from working. The Sunni group that attacked Yousef want to drive the Christians and Shia out of Dora. One way they can do this is to stop them from being able to work to support themselves and their families.
Barnadet understands this only too well. An Iraqi Christian, her husband had worked in a liquor store in Baghdad. In June 2006 Sunni insurgents attacked the store, because it violated the Qur'anic prohibition against alcohol. They left the workers dead. With no way to support herself and her two children, Barnadet had little choice but to leave her old life behind and flee to the relative safety of Syria.
Economics of war
Such stories are not unique to Baghdad, or even to Iraq. In times of war, economics becomes a weapon, and a functioning economy is always one of the first casualties of the fighting. In the struggle for scarce resources, Iraqi Christians - a minority mistrusted and despised by many of their fellow countrymen - almost inevitably fare badly.
The violence engulfing Iraq has led to rising costs and falling living standards. Shopping has been very difficult in the last few years, due to the fear of bomb blasts in markets and streets, as each group targets the other, depending on which area was last hit. In a recent attack, seven Christians were caught in a blast in a Christian district of Baghdad, Camp Sara.
As Paulos*, an Iraqi Christian community leader explains, "nowadays much shopping is done from the backs of trucks and vans, which go around to residential streets and people go out and buy what is available there. If the seller runs out of tomatoes, families go without, as it is too dangerous to go to the local market." His point is well made: as we were talking on the telephone yesterday, a report came through of a bomb exploding in a food market in Dora. Ten more Iraqis who will never again go home to their families.
The cost of living in an Iraqi city is high, Paulos estimates that the average person needs at least $300-$400 each month to live on. "That's if you have your own house", he adds. "If you rent your accommodation, you need to find at least $200-$300 for rent alone".
Christians left visible and vulnerable
Finding such sums is far from easy, with fewer and fewer jobs available to Christians. Working privately brings the risk of being mistaken by insurgents as a worker for a foreign company. This can lead to being kidnapped for ransom, threatened or even killed. Work within government offices is also hard to come by for Christians, as ministries have become the fiefdoms of the group in charge of them; Sunnis will employ their own people and Shia their own.
In these neighbourhoods even your name and appearance can reveal your religion. The militant gangs who roam looking for prey can easily identify Christians, many of whom stand out because of their fair complexion. Christians are left vulnerable to attack by any number of groups, whether religiously motivated Sunni and Shia militia, or gangs in it just for the money.
For some Christians, the nature of the work available to them brings inherent risks. Security firms are one of the few professions still willing to take on Christian workers. Khalil*, an Assyrian Christian, found work as a security guard protecting government property in 2006. His patrol was attacked by an insurgent group, leaving him too badly injured to work again. As the bread winner and main protector for his family, this was a double blow. He now lives as a refugee in Syria with his wife, children and elderly parents.
The places and personal circumstances vary each time - between June and August of 2006 reported Christian victims included a traffic warden in Baghdad, an engineer at a Basra power station, a shepherd tending his flock near Dohuk, and two furniture makers in Mosul - but the underlying factor behind the attacks is always the same. They are targeted because they are Christian; they are vulnerable because the need to work puts them in situations of risk; and they leave behind families who will struggle to survive without them.
Restrictions on movement
In Iraqi cities, neighbourhoods are being locked down into sectarian strongholds. Moving freely between areas is becoming harder, even for those who are neither Sunni nor Shia. These difficulties bring a new dimension of problems for workers, as professionals cannot get to their place of work, tradesmen cannot visit their customers, and passing trade for shops and stalls dwindles.
Neither safe nor sound
The home life that these dangerous jobs are paying for is far from comfortable or safe. Basic services have suffered in all the major cities. Water plants are a regular target for insurgents, so much of what water is received is usually not clean or hygienic enough to drink. Electricity supplies are infrequent, with few qualified electricians available to repair the damage caused to generating stations by years of neglect and compounded by frequent insurgent attacks. The few hours of electricity available to homes each day means that appliances such as fridges and freezers are now something of the past.
Danger stalks the communities lived in by Christians. This week alone there were reports of several attacks by Islamic militants on Christian communities in Baghdad, and in Mosul at least four Christians were killed by a gang of insurgents.
Stories of kidnap of Christians from their homes or places of work for ransom abound. Militia gangs see the Christian minority as a good source of funding for their activities. Ransom demands are often extortionate, but as time goes on kidnappers are becoming more willing to negotiate downwards, to sums that can realistically be raised in a short time. This indicates an opportunistic streak - gangs are happy to get what they can. The flipside is that they are putting a lower and lower price on human life. Whereas once they would have killed for lack of a few thousand dollars, now they will kill for a fraction of that.
Education suffers
An additional hurdle for Christian families in Iraq is ensuring that their children receive an education. Many families, especially those with young girls, will keep their children at home rather than risk them in the pursuit of an education. There are various sources of threat. In one area, where the Mahdi Army is active, students will be targeted for not wearing Islamic dress. Schools and universities have frequently been targeted for bombings, leaving many student too scared to attend. Others simply abandon their studies because of the need to work to support their families. This short-term need is jeopardising their long-term economic future.
Driven out of Iraq
The result of all these factors is that many Christians do not know where to turn. They need to work to earn money to survive. Doing so puts them at the mercy of the Sunni and Shia militia gangs, who have made it clear that they want the Christians out of Iraq. The home life they are working to preserve is unrecognisable from that before the fall of Saddam. Caught between a rock and hard place, those who can are choosing a third option; flight to safety. "Family life, as it was before the invasion, has changed dramatically", says Paulos. "Christian houses have become open prisons, out of fear of indiscriminate bombing. These factors making leaving for Syria and Jordan more attractive prospects."
* all names have been changed for the safety of the people involved.
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