Several days ago I read what Joan wrote about how at every caregiver conference they tell you that you will die from stress before your loved one dies of Alzheimer’s. It’s a scary thought.
This brought me to one of those questions I’m almost afraid to ask, but here it is: Is there ever a point when we get to reclaim our lives? When we get to think about what we want or what we need? For over five years, all my time and energy have gone toward taking care of my husband. All our financial resources have gone toward his medical care and the things that he needs. Forget things like new clothes for me, or makeup, or getting my hair cut, or going to a movie or visiting out-of-town family. Those things are things from a previous life. I don’t even get to have medical care, because we only have enough resources for his—and sometimes not even that. There’s no question of respite care, because there is no money for it.
I believe in my wedding vows. If I didn’t, I wouldn’t still be here. But it’s starting to feel like just making sure that my husband is taken care of isn’t enough to get me out of bed in the morning. I don’t think it’s just the stress that kills caregivers—it’s having to give up every goal or dream they ever had for their own lives. People need hope of some kind to make life worth living. But it’s like once we’re “caregivers” we’re not supposed to have feelings or needs, or want anything other than to take care of our loved one.
On another caregiver web site, I read about how caregivers are often locked in by society’s expectations. One lady told the story of sitting around with a group of women, where one was telling about how she was getting a divorce because her marriage was so miserable. Another woman then related how she had thought of divorce, too, because of the burdens of caregiving. The first lady—the one getting a divorce because she was unhappy in her marriage—turned to her and said, “What about in sickness and in health, until death parts you?” Evidently being unhappy is grounds for divorce, but being crushed by the demands of caregiving isn’t. The caregiver probably left behind things like “happy” and “fulfilled” years ago.
Also, with the issues of mental and even physical abuse from our spouses—things that would be unacceptable for normal marriages are things that we are supposed to learn to accept, and even not to mind. What does it do to a caregiver’s spirit to try not to mind when their spouse screams at them, curses them, and threatens bodily harm? Where are you supposed to go in your mind that will make you not care that this is happening? And how do you ever get back from that place?
I went to a dementia support group last night. In our conversations, it came out that all but one person there was on antidepressants, anti-anxiety drugs, or both. Is this any way to live our lives? And this just goes on and on, year after year. I know that most of us really do want to take care of our loved ones, but are we going to be left with enough to take care of ourselves? Or are we even allowed to ask questions like this?
I'm fortunate. I have a job I love and I HAVE to work - financially. I'm looking into day care for my husband, because soon he won't be able to stay alone. Because I work, I can forget about the AD for short periods of time. I also can afford to get my hair cut occasionally and meet a friend for lunch once a week. I'm also making plans for the future. I don't know WHEN they will happen (I just think in terms of a few years from now), but I'm planning on taking a few trips that we had planned to take together, but he can no longer take. I still want to see those places. I also still have dreams for my future. And I don't feel guilty for them either.
I really pray for those whose AD spouse are verbally and physically abusive. I don't know how they take it. It's scary enough each day when I go home to find out what he's broken or lost and put it back together, throw it away or find it. To stay at home all day every day - those of you who do are better than I am. I don't think I would if I could. Call me selfish. Maybe it is my self-protection mechanism, I don't know.
YES, you are allowed to ask questions. We all are. That is another reason why we are here. Giving care is not giving up ourselves!!!!! We are giving up time and energy and gaining stress.
Joan's Place (now JP's) is how I think about this web site, and it has been a wonderful place that helps me function, gives me understanding, has helped me develop several new friendships, gives me answers, and lets me know when I am doing the correct thing, or have made a mistake and need to change what I am doing.
I don't have answers for your questions. Except that this is not the way we want or chose to live our lives. There is no way that we can't care about what is happening. I'm sorry if you are having to do this alone. We are here to help each other through this the only way we know how.
Those who have physically and mentally abusive spouses may be able to help you by addressing those issues here. Among our group they have found different solutions: One has an apartment of her own; another is going to get one; one is sending him to his relatives for a couple of weeks. Each has a solution that works for them, and I applaud them for finding a way to deal with this insidious disease in their particular situations.
Jan, the people on this board know far more than I do but you may be able to get help with the respite care from the Alz Assoc. We have an office not far from where I live and I went there a few weeks ago. The lady told me that they allow you $500.00 a year for respite care. You can use it to have someone stay with your DH for a couple of hours or however many days. If they have an office near you or one you could call I am sure they will help.
My DH isn't too bad so far but I am dreading the times when he will get worse. I have never had a lot of patience and wonder how I will handle the really bad "stuff". I am sorry you have so much stress and hope and pray you will find a way to get abreak from all of it....even if it only for a couple of hours.
Yes, you are allowed to ask that question, especially here, where it is so related to marriage. For now, go to the top of the page and click "search". Fill in the "topic" circle, and write in "LIfe after AD". There are posts related to your question. Also, copy and paste this link -http://www.thealzheimerspouse.com/LifeafterAD.htm- into your browser - it is the Blog I wrote in March - "Life After AD- Should you feel guilty thinking about it?"
To answer your question in a little more depth, I would say that you are definitely suffering from caregiver burnout. Where money is an issue, you and your husband, or certainly your husband, may qualify for Medicaid, which will pay for a NH for your husband. You would need to contact the Social Security Office in your area to find out how to apply.
The question you asked is a HUGE issue, especially among spouses. Many live "parallel" lives. They develop interests and friends outside of "caregiving", and that is their lifeline. One of our readers, Sandi, took care of her husband at home for 11 years - he just recently died. She wrote often of her separate life.
Bettyhere's husband died about 5 years ago (not sure of the exact timeline), and she has written about her life after AD - it is full and she is happy.
There is life after AD, and no, you are not wrong to think about it. I hope many of our readers who have been through this and come out of it, will respond to your question.
Jan K Yes you can ask the question. You make a very good point that in a normal relationship, we spouses would not be expected to put up with the verbal abuse and threats of physical violence. There are laws etc to protect people from that type of behavior. We however fall between the cracks. When you tell someone that your husband has dementia they usually reply so he forgets a lot. I wish that is how it was, if he were just forgetful that would be pure paradise. They do not understand the whole scope of this disease. How debilitating this disease and how stressful it is for the care giver. My previous husband died of lung cancer. At the end I kept him home with hospice and kept every promise I made that he would not die in a hospital with machines. It was hard,scary and lonely. But he never blamed me for his lung cancer, never told me the problems we encountered were because of "my lung cancer". This dementia is a cruel disease. I too am on xanax just to survive. My husband threatened again last night to divorce me. We talk to the social worker in 1 1/2 wks, if she can't help him see he is the one with the problem I think I will take up his option of divorce. We have been together 12 years married over 9 years. However the man I married is not the man I am now living and sleeping with. We care givers really need for people to understand the hell we live with each minute. I am not certain we can reclaim our lives until you see it through the end or they leave us.
Wow, great subject....I so feel for all of you who are still in the trenches, so to speak. Caregiving did not come easy to me...especially since my husband was one of the big, stubborn, mean, uncooperative, etc. AD patients. In the middle stages of the disease, there were many times when I wanted to walk out the door and not look back. In fact, I did place him in an AD specific facility for a couple of years so that I didn't kill him! Seriously, I couldn't get him to do anything, shower, shave, change clothes, sit down, sleep...well, you get the idea. Before AD he was a perfect gentleman....treated me like a queen for forty years and worked hard for his family. So, the change in him was significant and hard for me to handle. I did bring him back home when he became bedbound and docile and I cared for him until his death in March.
But, I digress...keeping your own life going is not just important, it is essential. This disease will take both of you as victims. If money is an issue, explore every avenue to see what aid you and your husband qualify for. The suggestion to look into placement in a facility under Medicaid is a good one to look into. Not every caregiver is able to see this job thru until the bitter end. I was relatively young....I am 60 now....so I was able to bring him home and care for him but the everyday stresses are hard to handle unless you have semi-separated yourself from the issue at hand.
Trust me, ASY, no social worker is going to be able to convince your husband of anything. His "reasoner" is broken....when that happens, all bets are off. I wish I had answers for you....I don't. But, I do know that you need to take care of you....the caregiver is an important part of the whole equation. You need to enlist the aid of the social worker to help you find some resources. That would be the best thing for you both.
Sandi- You are so right. I guess I have known that but don't like to admit it. I am tired of people asking " Is he all right?" Your right his reasoner is broken beyond repair. Where is it written that abuse is all right under these conditions? Jan K I wish I could give you more support. We all believe in wedding vows or we would have been out the door along time ago. But sometimes we aren't given the choice. My late husband died of lung cancer. I said to him when he was diagnosed you promised not to leave; he said "It's not my choice". This horrid disease is not their choice either. But this time I am being blamed for the disease. That is a big difference. Should be an interesting summer.
In other discussion forums, the point has been made that we have a responsibility to ensure that a LO is taken care of ... but we do NOT have a responsibility to actually administer that care ourselves, in our own homes. The topic is usually for children taking care of AD parents, but I think it also applies to spouses.
In fact, I think the in-home care may often not be as good as the care given in a good ALF or NH, simply because one person cannot do it all, nor are we trained in the proper procedures. Perhaps, in some instances, we are actually doing a disservice to our spouses by keeping them at home.
With regard to being able to afford respite care for the caregiver, there have been many posts/threads over on the Alz Org web site about this. Apparently, there are many places you can apply for the money you need. Posters have suggested that you check with the Alzheimer's Association; Elder care services, local councils on aging, senior centers in your area; Medicare; and your secondary insurance if you have it. Also, social workers at local hospitals may be able to help you set up home respite care.
One woman said that Senior Services told her she would be eligible for about 200 hours of respite care per year. Another said that, at least in her area, she was told there is money that is not being utilized, so to contact her local Office of Aging and see what they have. Michigan has an Adult Waiver Program that can help with respite care, etc, and presumably other states have similar programs. Yet another suggested that you google "respite care" and the name of your city/state.
Comfort Keepers (www.Comfortkeepers.com) posted that they work closely with the Alzheimers Association; and they have applications for those of us who need extra finances to afford Respite care.
I agree with Sunshyne though I phrase it a bit differently. We accepted the responsibilty for our spouses care when we married them. In my mind, that means making sure they get the right care whether it us or someone else. When I could no longer keep my husband safe at home and no longer felt safe with my husband home, it was time to put him in an ALF.
I regret having to make that choice, but putting him in the ALF allowed me to be wife again and not just caretaker. I actually got to enjoy him and remember what a fun and loving person he was before he degenerated to the next level of the disease. The other positive thing was that his being in the ALF has given me time to get used to living alone.
Now as he continues to worsen, I still see him most days but I am also able to take some time out to begin doing some of the things that I like to do to help balance the whole picture.
About a year before my DH was diagnosed with AD, I thought that there was something very wrong with our marriage. The wonderful marriage that we always had, was becoming very strained and I felt he was growing away from me. When I finally approached him on it and said "If you no longer want to be married to me, please let me know". I can remember it like it happened yesterday, he fell to his knees and started to cry. He grabbed me and said "I love you more than life itself, but, there is something wrong with me". About 6-8 mos after that, we got the diagnosis of AD.
I too had to make the difficult choice of placing my DH in a NH. He was already into Stage 6 and needing almost total care. It was a year ago on Mother's Day that I had to place him, so, it has been pretty hard on me to get through. But, I know I did the best thing for him. He is smiling most of the time, eats very well and loves to see me, even though he might not completely know who I am most of the time. We hold hands, watch sunsets together, I read to him, listen to music, etc. We have more time together now that I am not his 24/7 Caregiver. When my DH started to wander everywhere and I felt safety was then becoming an issue, that is when I had to make the hard choice to place him. Of course, he is in the Stage now where he is totally dependent on his Caregivers for everything.
I too have also had to start getting used to living alone again after 26 years of marriage. It is not easy, but, I am doing the best I can. There are several divorced and widowed women in my neighborhood, so, we try to go at least once a week to dinner, play shuffleboard, pool, or just sit around have a drink together and just talk. I am trying to get some of my life back a little at a time, but, it is still very difficult. No matter what I do, I am always wanting my husband back and I know that will never happen again. It is just a struggle, but, one I will have to endure.
What you mentioned about marriages coming apart BEFORE AD IS DIAGNOSED is a huge issue. Writers on this board have alluded to it before, and it was a theme in the CNN.com article that was written about me and other spouses. None of us could figure out what was happening to our loving marriages and spouses. This will be a topic for a later Blog - I guess it's up to us to get the word out and raise awareness of the EARLY symptoms of Alzheimer's Disease that no one would ever think about.
One man told me about working 14 hour days and coming home to no laundry done; no supper on the table (wife was a stay-at-home Mom); the house a mess, and a seemingly uncaring attitude from his wife. The only explanation he got from her was - "Oh, I forgot to take something out for supper." This went on so long that he was ready to leave her. Then he figured out that something was really wrong, and took her for extensive testing - misdiagnosed twice because she was so young. Finally got an EOAD diagnosis.
No one has any idea of the strain this disease puts on marriages.
We were childhood sweethearts, absolutely crazy about each other, never any doubt, so what happened as time went on? I am not introspective enough to question what is wrong with me (altho others can and have told me), and I didn't really think anything was wrong w/him either. But I felt we were somehow missing each other--well you know, hard to explain. Twice I dragged him to marriage counselors. He resisted, of course, once let me sit there crying as if he had nothing to do w/my pain. After two or three session each counselor advised me to leave him while I was still young and pretty enough to get another man. They saw something that could not be fixed. This was decades ago, no one ever mentioned the word Alzheimer's or even dementia in those years, it simply was not part of society then, it had nothing to do w/a marriage. It was not generally known about and anyway, if someone was demented they were old and not using their brain, it didn't apply to the life of a healthy, young man. And, absolutely, EOAD was not on anyone's radar. Today, I now know it was there all the time.
But I would never leave, I loved him, did not want to break up my home, be a working Mom & the kids w/a week-end Dad. I've always been strong, it would be OK. But there were times, and I could never explain why, that I felt like I was pulling myself up a cliff with a locomotive tied to my ankle and he was hanging onto the other end. Yeah, it was a strain on the marriage--go try and tell that to a marriage counselor. Maybe it's different today, maybe some marriage counselors study and train in how dementia can destroy a marriage--maybe.
PS - thank you Joan for going to DC and all you do. I lived in DC, went to Roosevelt high school there, great city.
this explains why I read so many times where an ex is care giver to an ex-spouse. The AD spouse divorses the spouse to "solve" their problems or the marrage breaks up because neither knows why they are having problems and then the AD spouse needs their ex-spouse back to help take care of them. And, of course, the spouse didn't want the divorse in the first place and still loves them, so they come back.
How difficult it must be for you young women taking care of a husband with dementia. The question asked about claiming your own life and what would you have to look forward to is an excellent one. I am probably older than you, so most of my life is gone. What DO we do when most of the money we have is used to take care of our spouse? What happens to us? I will have to face this much sooner than you, and that question scares the hell out of me. I turned my life over to a man so he could get ahead in this life, stayed home for 17 years taking care of my children (which, by the way I will never regret. I loved doing it.) But, I thought I would have a chance to further my education afterward and do something with the rest of my life. That never happened. Something always came up. He wanted to get his Masters Degree. He did. He wanted to get his PhD. He did. I worked for almost 30 years after that, but never got to pursue my education. Now, at my age and with a husband with dementia, I've let it go. But, you have a chance if you're young. Think about the life you have ahead of you. Dream about it. Take care of yourself so you can enjoy it. Do what you have to do to make sure you have a chance with the rest of your life. Get help. Do everything you can not to go into depression. I went through that 20 years ago. It was awful. I vowed it would never happen again. So I follow up with social workers who check up on me, knowing what I'm going through. My kids help all they can. But, no one who hasn't gone through this has any idea what it is like. The paranoia he has is what makes me scream in my head. Today he yelled at the nice man next door because he takes care of cars in his spare time to make extra money for his family. My husband yelled at him (unbeknownst to be because I was vacuuming when he went outside), told him he had no right doing it and not paying taxes. I was mortified. This kind of thing happened so many times over the last 10 years or so (not screaming at the neighbor but at other people,although not quite the way he did today; maybe his dementia started then. I'm sorry, I'm going on too much. But, this subject got to me. Yes, ladies, think about the life you'll have when he is gone. Don't feel guilty. Maybe even do some planning for it. You deserve it. We all deserve it. The life we live is more stressful than most people can even begin to imagine.
I feel the same as you..terrified of the future when the $$$ is gone...what do we do then? We are too old to be in the work place to replenish what has been lost. This is most of the cause of my panic attacks at night. Need to get back to meditation, I guess.
You ladies are not alone in your fears about surviving the future. I am only 57. Right now our income is the SSDI he was finally approved for. I am not sure if i fear him dying sooner or later? Sooner and I will have life insurance but no other income. With today's economy the chances for over 50 (maybe even 40) of finding work is getting slimmer. If this disease takes years I might not be able to keep affording the life insurance on him (it is term and will go up after 10 years -5 to go). Yes, not knowing how I will survive after is the worse part of it all. I wasn't planning to have to deal with this until in my 70s at least.
No matter the age, when you have depended on your spouse for the bulk of support and catered to their career desires etc. - well we know how that ends up.
babozek - you hear of women in their 80s and 90s graduating from college with BA,Masters and Phd.
I'm hoping my health and stamina will hold up. I shudder to think of me being gone and him in a NH. He's so dependent on me for everything now. The finances are also scarey but at this time he isn't costing too much. Just his insurance and his meds--which are plenty--but healthwise, he is in very good condition. He's 5 years older than I am and I am working out 3xweek at water aerobics and trying to stay active mentally and physically.
I try to save back some out of each month for 'mad money.' Im the one going mad, you know. :) It certainly isn't much but it is something. I have it in an account under my own name. Wonder what good that will do if he has to go to a NH.
It is a big concern. And I'm sure all of the spouses on this board feel it.
I strongly urge all the younger ones on this site to start putting in place a plan for the future. If you are now working try to continue working. Yes, at almost 82, My life is on that fast downward path. DH will be 87 in Dec. and is in pretty good health except for the Alzs and he is in stage 6. I take one day at a time and I know that the NH is almost certain. Am I scared? Yes, but I will do the best I can. I know what it is to be poor and I hope I can go back to squeezing my pennies and making it by myself. I do not want to be a burden on my children. You owe it to yourself not to let this disease take you down too.
I am 53 and my husband is in stage 6 of alzheimer's disease. I am now on a medical leave of absense for me, not him. I was exhausted and stressed to the gill. I would cry at the drop of a pin. I gained a lot of weight over the past few years and didn't realize it was the stress literaly eating away at me. I've made the difficult decision to place my husband after the holidays. I will be going back to work and there is no way I can continue to deal with all of this and stay healthy. AD will still be in my life but it will be different.
I also, am terrified at what will happen if I have to place my husband. As long as I can keep him home, I'll probably have enough money to live. If I have to place him, everything will go down the tubes. And at this point I've got the basic documents in place. So there is literally nothing else I can do, even talk to an elder care attorney, until we get closer to what is going to happen, IF it happens.
I'm caring for my husband who could be mentally and physically abusive before diagnosis. He also had a drinking problem and two major heart surguries. I still love him and I forgive him but I sometimes think this is just too much after 36 years. His family often told me they didn't know how I could put up with him.
I sometimes pray he'll die in his sleep from his heart conditon so his alzheimers won't progress, then I can mourn and try to move on with my life. There was some good in him. He always believed in paying the bills and saving for a rainy day.
porkhck = there are too many of us on here that has less than good marriages but have stayed with our spouse. And you are not alone in praying that some other disease will take them instead of us both having to go through this horrible journey.