Follow
Share
Read More
This question has been closed for answers. Ask a New Question.
Find Care & Housing
My husband and I took care of my mom for 5 years when she had Alzheimer's. Of course, it's different than helping a spouse, but the stress and lack of social activities for me was the same. I used the strategy that I used when I played tennis on a community league, especially when my partner and I were losing: take it 1 step at a time. I even wrote a book about our travails: "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I found that trying to find humor in an otherwise unfunny situation helped. Maybe you could join an online, Facebook or phone support group. The Alzheimer's Association www.alz.org might also be able to offer suggestions. They also have phone support groups in many areas. Maybe you could contact a local college, to see if any student, either graduate or undergraduate, would like to sit with your hubby for a while. Also, some Areas on Aging have volunteers who would sit with someone, and you can say that the person really enjoyed volunteering, so they'd both benefit from it. You could also approach a local church or temple and see if they had any volunteers who'd be willing to sit with him a few hours here or there. Also, some students might need the experience as part of an internship or class experience. Older people and younger people can mutually benefit. Maybe the Department of Psychology or Sociology might be a good place to start. I also had to remind myself that my mom couldn't help her situation: her brain was calling the shots. Best of luck.
Helpful Answer (1)
Report

Many great suggestions here.... join a caregiver group online.... get some in-home care/respite so you can get a break.... do it slowly ....get POA....do not fall for "he won't let anyone in the house"...."won't let me leave the house" - you need life jackets - use them!

One addition I can offer... make a scrapbook of your times together, his life accomplishments. It will help him remember, celebrate his/your life together, it's creative/therapeutic and will help you both grieve. I started such a book out of irritation when my Dad, who lived with us, would be on the phone with my sibs, at a distance, and he couldn't remember what he/we'd done recently - so he'd say "Oh, nothing, I'm just here visiting your sister, we haven't been doing much." What!!? - I'm a one woman social committee!! - who'd crafted a rich life for him with an adult day pgm, volunteers visitors, community activities together, etc... That book, a simple school notebook, with many pictures of everything we did together (feeding the ducks, haircuts, music events, backyard BBQs) - is now my TREASURE! And it helped Dad to have conversations with others well into his dementia.

Your grief at what you are missing out is real. But the idea is to enjoy what he/you do have left. Create memories (for you) and capitalize on what he has left. Consider your spouse's hobbies and interests - and try to adapt them to his "functional age" (read up on retrogenisis @ Retrogenesis - Age, Aging, Developmental, Job, Differences, and Clinical - JRank Articles) - how old is he now functioning? - age 9? - so go fishing as you would with a nine year old (if fishing, (or whatever) is not your thing, find someone who will enjoy that with him - bonus is respite for you); you hoped to travel together? - watch travel movies together; he was into astronomy? - take walks on starry nights - ask about the constellations - he may remember more than you think - but don't press him if he doesn't; he liked drawing/painting as child? - get some art supplies. You get the idea. It's the 'soft' side of nursing, the person-centered side. And don't forget to do things for you, just you - enjoy the life YOU have left. Good Luck.
Helpful Answer (5)
Report

Your note made me feel as though you are at my house reading my mind. I am in the same situation only my husband is 90 years old. Here is how I cope. I have a very close friend that I talk to every day on the phone. She is a listener and each day we talk about what went on the day before. She has taught me to take things easier -- to learn to laugh== and mostly to pray. Prayers have helped me a great deal. I bite my tongue and say a Hail Mary. I also try to remember that it is not him doing this but the disease. Try to see the humor and keep trying to do your best. Just take ONE DAY AT A TIME.... I listen to that song on You Tube each day. That also helped.
Helpful Answer (2)
Report
Debstarr53 Dec 2020
This is how to make a helpful comment.
(1)
Report
Your note made me feel as though you are at my house reading my mind. I am in the same situation only my husband is 90 years old. Here is how I cope. I have a very close friend that I talk to every day on the phone. She is a listener and each day we talk about what went on the day before. She has taught me to take things easier -- to learn to laugh== and mostly to pray. Prayers have helped me a great deal. I bite my tongue and say a Hail Mary. I also try to remember that it is not him doing this but the disease. Try to see the humor and keep trying to do your best. Just take ONE DAY AT A TIME.... I listen to that song on You Tube each day. That also helped. Fell free to write me any time.
Helpful Answer (6)
Report

BEnglish a nurse and hVe worked with alzheimers patients, there's not really much anyone can tell you that you don't already know.

Out yourself in his shoes. Just because your a few years younger doesn't mean the same thing can't happen to you at an earlier age..

Dont assume your husband is doing or saying things just because. Assume he's doing the best he can.

You might start having a weekly session with a therapist if you don't have family or friends that you can talk to.
You might hire Caregiving help so you don't feel so overwhelmed and you might go ahead and plan a vacation for yourself to go in a group somewhere so you won't actually be alone.

If you don't want to hire a Caregiver while you're gone, check with your children and ask to let Dad stay with them a week, that you need some time to yourself.

Be thankful your husband can do the things he can do, it could be a lot worse.

So what if he rearranges things in his room,, it is his room and he's bored.

Find things to entertain your husband or better yet, find things ya'll can do together.

Play games, Paint By Number, Arts and Crafts, ect.

Anything is better than doing nothing.

Trear yourself, hire someone else to clean your house.

Orider dinner in and watch a favorite movie together.

Give each other a massage or Hire someone to come to the house.

Prayers
Helpful Answer (2)
Report
Debstarr53 Dec 2020
bevthegreat, This kind of comment is probably not helpful. Makes me wonder if you have ever dealt with this.
(4)
Report
See 1 more reply
You have very good advice. I had my husband 12 years at home. Alzheimer’s starts slow getting worse. Read all you can & utube help. I learned early there are 2 worlds his & mine. In his you cannot change him. In ours you keep learning. Like a child learning more but his is in reverse & losing. Accept it cause that’s the way it is. One day he may ask you who you are. If you can stay informed what might come it helps accepting it.
i would suggest you find some people who are caring or have cared for Alzheimer’s persons. Meet once a week w/o your spouses to just share. Some times we would laugh at things that happen & that’s ok. Go to memory care places & meet some spouses that have admitted spouse. That’s a start of sharing. I met a group meeting weekly & we shared, laughing & crying. That plus my faith gave me 12 years caring. In Dec my 2 girls visited me & we toured all the homes & memory care places finances could afford picking our favorite. I decided to put him in for 2 weeks thinking I’d then bring him home. I did not visit at all so he would not think I’d abandon him. I talked to director & found he’d felt at home so decided to leave him & id just visit. He lived 3 months & died from kidney failure.
i had hired a man caregiver at home when I wanted to leave. He did jigsaw puzzles 100 pcs. Also dot to dot simple kid ones as puzzles too. He did same 5 puzzles over & over no realizing. Never let him see us tear it up.
i actually know 2 caregivers dying before so take time off & get a person or persons to share. Read ahead & call Alzheimer’s Assoc. Get ideas.
agingcare.com helped me before I discovered a live group.
Get legal advise now. You are then in charge.
when my husband died it was happy & sad time. After caring for so long I found different than others.
Helpful Answer (3)
Report

Don't feel ashamed, Mary. What you're feeling is normal and part of the "process" we all go through when a loved one has this terrible disease that robs us of our loved one and the future we thought we would have. Your compassion will come.

He truly can't help what he is doing and can't change no matter how much he himself might want to.

Our situations seem similar in some ways. It seems like you and I are about the same age, but my husband and I are 7 years apart. He retired several years before I did and once I retired (5 years ago), he no longer wanted to travel. Slowly he began to change until this past year he can do very little for himself. Like you, I feel our retirement years have been stolen. I was very angry at first and felt he was doing some things on purpose. At times, I wanted to go in the back yard and just scream. I ended up crying most days. Now, I have a better understanding of what he is going through and his inability to change no matter how much he might want to. He doesn't been realize what he is doing, how he is acting, or why he is the way he is.

Try to impress on your kids that their father needs their help and that you need help as well. Even if they take turns - one of them spends a couple of hours with their father this week, and another next week, etc. They don't even have to do anything - just sit with him and chat with him. That way, you're getting help and getting a break but they're not giving up their lives. You have to take care of yourself.

Talk with his doctor about possibly placing him in a long-term care facility at some point and get his name on any waiting list they might have. Reach out to friends. You'll be surprised how many friends and neighbors have experienced this same thing and will be more than happy to let you vent with them. That will be a great emotional help for you. Also, your friends will reach out to you if you need someone to pick up a prescription, get a few things at the grocery store for you when they're doing their shopping, etc. Let them help you - they need to because they care about you. Even if it's just to talk; they need to feel they're helping you as well. And it will take you mind of things for a little while.

Give it time, Mary. Try not to be so hard on yourself. Your compassion will come.

Sending you a virtual hug.
Helpful Answer (4)
Report

First, THANK YOU for being honest because it helps me!!! My mom is not nearly there where your husband is but I already have feelings of my time is being stolen though I've "chosen" to do all I can. I have posted here before and often, not always I don't get compassion, just useless advice, or adages. I too don't know how people do this for so long. COVID has made things worse too; more cooped up. I know I can't answer your question, but I SO HEAR your frustrations. Again, you have helped me feel okay I feel how I do.
Helpful Answer (4)
Report

Don't feel ashamed at all. You are among friends who share your thoughts and feelings. It is a rough road we are on. I wonder if you might consider starting a more local support group for others in your area? Or have the closest Alzheimer's Assn help to sponsor a more local group. You may think you are alone, but there are probably people nearby struggling as well. There is some small comfort in realizing you are not alone at these groups. Every area of our country is covered by a local area agency on aging and they should be able to tell you about local resources. You clearly need some respite, if only someone to come in and clean so you get some time off you can count on. Also maybe meals on wheels so you don't have to cook every day? Sending hugs and wishing you all the best....
Helpful Answer (2)
Report

Has he had an evaluation by medical or psychiatric care physician in the past 2 years? He may now be suffering from depression or his dementia has advanced (or both). I do agree that you need a break from caregiving. Your husband may or not understand what this is doing to you. Please don’t be afraid to reach out to senior care reps in social services, they are available to help assess care needs without judgment. You have nothing to be ashamed of. COVID might be a roadblock to services but it doesn’t hurt to ask. You came to the right place to vent. How can you not feel cheated when your retirement is not retirement, but now a 24/7 uncompensated job? Don’t be surprised if your daughters visit even less than before COVID. They are probably juggling online/home school(a nightmare from hell if child has special needs), and a full time job (or dealing with financial problems because of COVID shitdowns). There is also a fear of being an asymptomatic COVID carrier who could infect those who are likely to be killed by it. This is especially true if they are healthcare workers (major source of fear and stress for them).
Helpful Answer (1)
Report

How does everyone do it? Basically, the best we can. Some are financially better off than others and can hire folks for some relief. Others just plug along one day at a time. You save your curse words for another room of the house so no one hears it. You're tired all the time. It is draining to look for things all day long. And there's times you really do feel guilty for the anger and stress that builds up.

Try to find something, anything, that he can do. Fold a basket of towels several times a day. Don't let 'your way' of folding mess it up. Just let him fold, put basket away and drag it out again a little later. Tell him it's time for him to make a sandwich and place everything in same place in frig so he sees it. Put a snack out on counter early in the day and tell him to go get it. Keep him moving or you're going to be dealing with mobility issues next.

Your daughters may be busy, but if they can just alternate weekends to give you a break, it will help. Don't assume they are too busy. Ask. Some folks won't step up to the plate until directly asked. Some won't even after being asked, but don't assume that everyone knows you are worn out.
Helpful Answer (4)
Report

Sorry about your situation. It’s ok and natural to have these feelings of anger. I would too.

Up to a few years ago, I worked 80+ hours a week, was super busy constantly with my job, but I had extra time. Ask your daughters to help out. Tell them how stressed and burned out you are.

Hope you feel better.
Helpful Answer (0)
Report

I am in the same boat. You are exhausted and resentful. Very natural. I have been angry at my husband so many times that I have lost count. If you can afford to hire a caregiver, do it! Right now, he can bathe himself and go to the bathroom, but do not expect that he will be able to do that forever. With a caregiver, you both can work together to get him acclimate to the presence of another person in the house. When the time comes that he needs help with bathroom activities or activities of daily living activities (ADL), everything will be in place and your caregiver knows what to do.

You need to rest. And memory care isn’t cheap!
Helpful Answer (1)
Report

You may want to explore In Home Caregiving. Many can help provide what is known as Respite Care and is designed to give the primary caregiver a break. You may find you feel better if you can get one or two days off a week, or someone to provide overnight safety and supervision, or cook dinner and do laundry, if that can help you with the caregiver fatigue.

You have absolutely nothing to be ashamed of. 24 hour care 7 days a week is very hard to do!
Helpful Answer (2)
Report

Be kind to yourself. Self-empathy and self-compassion are on your 'TO DO' List.
All your feelings are valid and understandable.
Are you able to (mentally, emotionally, psychologically) investigate alternative living situations, i.e., a care facility or home with 2-3-6 people in it?
I realize with Covid, this may not be possible although perhaps you can get the research started.
* It is critically important you take care of yourself.
* Perhaps have someone come in to help you, if not him, directly. Cook - whatever you do that someone else could help you with.
* And find an outlet that is fun or at least takes your mind off reality for a while. Get a head set and listen to music. You need to find ways to nurture yourself and funnel the resentment, disappointment, GRIEF, and anger.
* Get a therapist and see if any Zoom support groups. It is essential that you look at the feelings of 'ashamed' and turn that around to "I'm doing the best I can, I'm human".
* I certainly validate you 100% although I don't speak for everyone. Brace yourself for the traditional religious folks who have very different take on these issues. My belief is that no one needs or should lose their life or quality of life, due to a loved one with serious brain chemistry changes happening. You are only as helpful to your husband as you are good and supportive of and to yourself.
* Create a list of five behaviors you could do for yourself. No matter how small. You need to learn to re-energize yourself and work through alternative possibilities of care - for both of you. Gena
Helpful Answer (1)
Report

I totally "get it" and my situation is not nearly as bad as you described. My dad has some dementia and won't lift a finger to help himself. He's 93 with other health issues and I do anticipate a day when he won't be continent or able to dress or feed himself. His mother lived until almost 100 so I know this could last a very long time yet.... I feel so guilty when I sometimes wish he would just have a heart attack or something major... I don't really want that, and yet I kind of do. To think that right now, he's relatively easy to care for and I already feel like this!?! My cousin cared for several relatives, each for many years... how did she do that? Even if Covid goes away and I move him into assisted living, I'm not going to be able to do extended travel as there is no other family here should anything come up. In a way it's actually easier having him here rather than feeling guilty if he's in AL and I don't feel like driving there to visit him each day.

I hope you are getting some help in order to allow yourself a few hours of respite (not that there is anywhere to go or anything to do during covid).. I am lucky to have my husband to help and I cannot imagine doing this alone so, bless you! I hope you will be able to put him in a good place so that you may replan and being living your retirement soon.
Helpful Answer (2)
Report

Imho, you must seek respite through any means possible as you're at a breaking point. No one person can do caregiving solo. Seek help through your town's Council on Aging. They should have a social worker on staff. Start there. Prayers sent.
Helpful Answer (0)
Report

Dear Mudslide Mary,

I have been giving your situation and the many answers you have received much thought.

I am in the same situation. I am 70; my husband is 87. I have been his caregiver for ten years and he has been mostly in bed for the last four to five years. He has several issues and has also just received a very late diagnosis of Parkinson's. He has dementia of some kind, and this morning for the first time, seems to be hallucinating, quite divorced from reality. he is in diapers and generates mountains of laundry.

You and I should both be looking for support groups for caregivers online via zoom or something.

In the meantime, I would like to give you a few notes from my experience, not particularly in the right order!

Here goes:

Accept what is happening. Since you are a nurse, you have a great advantage over me. I greet each new bend in the road with denial, anger, and self-pity. You know what these bends in the road are and what to do.

Practice gratitude. Believe me. The fact that your husband is ambulatory and can toilet and feed himself gives you much freedom and a lighter workload. Cherish this.

Follow your bliss within the parameters that you have. He can't/won't travel? Travel without him--when you can! Find relatives, friends, hospice volunteers to take care of him in your absence and take to the road. Want to learn a new language? Do it online! etc. This is your life. Make it a good one.

Let us both remember that we are frontline soldiers in an international army of caregivers. We are not alone, and our situations are not the worst possible.

OK, this is a tough one: get philosophical, spiritual. I promise you that you can't do this without a bit of emotional distance and loftier purpose. Caregiving opens a door to humility, kindness and service. Go with it. The alternative is perpetual resentment--and that will put you in the grave before your husband. Read up on the spirituality of your choice--there is not a religion or philosophy in the world that does not endorse kindness and caring.

And right along with that: practice self-care in every way. Eat right. Sleep. And get strong, work out with weights. I cannot stress enough how important it is to be physically strong. But as a nurse you know this.

Finally, lower the bar. Absolutely nothing has to be done perfectly.

Good luck and a big hug!
Helpful Answer (7)
Report

Is there anyway you can get someone to come in to help as a "friend" (tell him that its someone you know visiting) to help out a little bit.  I can see that it would be frustrating because you are just starting retirement and he has been in it for some time, no wonder you feel "robbed" of travel time, etc.  Since you said you worked in the nursing field then you know that what he is doing by "going thru stuff" is normal for that type of brain misfunction.  My mother said my dad would go thru stuff every night.  In fact I would go up to the house and find "important" documents scattered all over the house which my dad would have never ever done before, but he had dementia and didn't remember getting the stuff out, but the next time I went up he had it all back in place.  My mother never gathered the stuff up (now that I think about it)......not sure what her thinking was on that.  Its a shame that this disease robs people of their brain functions and twists them all around.  I don't think now at his stage you should travel, unless you just want to get in the car and drive around the countryside close to you.  Tell him that your friend is coming over to have "tea", but then maybe she can stay there a little bit while you go out to the store (If she could keep him entertained by looking thru photo albums or talk to him about stuff he did when he was younger).  it might give you a little break.  Depending on how far your children are away from you, even though they have their own family things, surely they can come 1 time a month to give you a break for 2 or 3 hours. I wish you luck and hope you can get a little respite time for yourself.
Helpful Answer (1)
Report

Omg honey. I feel right along with you on this. Except my ordeal is dealing with a mother. I realized when I moved in with her 2-1/2 yrs ago that she has been very narcisstic my whole life and I'm 58. I had just had my last daughter of 4 move out and I was kind of enjoying the empty nest thing. Things got bad for me (lost my home) and so sold everything and moved in with her to help her until I could buy an rv to be able to travel and not have everyone so dependent on me. It has been horrible. Lost my truck because I couldn't keep a job. Everytime I tried to go to another caregiver client she'd find things to make me late. I had to sell my one toy that I wanted to keep and enjoy was my atv. Had to sell it to pay my bills which only equal $220 a month. All this time I've not asked for anything. Some of my girls believe that I should be paying her rent.
It's all so unfair and feel as I will die before she does because of all the stress.
So I will be praying for you and myself to help us get through this so that we may enjoy life a little.
Helpful Answer (1)
Report

It is wonderful that you are still taking care of your husband but how much longer can you take all this stress? If your husband is 84 would he be happier in a nursing home? I am married to a man who is also 13 years older than me and I have become his full-time caregiver as well. I believe it comes down to the truth about your situation and how it affects your daily life. If you have years to be sane and happy you must be some serious changes if you are to survive yourself. Don't you deserve some peace and tranquility in your retirement years too! If you are worn out how will you take care of him and yourself going forward? I hope you make the right decision for the both of you soon!
Helpful Answer (1)
Report

Dear "mudslidemary"
When I read your story it was like someone was actually telling my story. So many details and feelings you shared were the same. I was so shocked I just had to take a step back and consider how to respond to you.
I am not a professional caregiver or in the medical profession so when I became my husbands full time caregiver I was not prepare both mentally and physically. I didn't fully understand what was to come as his needs changed. I tried to reach out for help with his care but found it difficult as we had limited financial resources. So I became caregiver for my husband 4 years ago. He was suffering from multiple medical issues including liver disease. Like you I had just retired and was looking forward to being able to travel and do some fun things after working full time for 48 years. My husband being 13 years older had been retired for over 20 years so he didn't understand my desire to travel and experience new things. Our story is a very long one over the past 4 years with multiple ER visits, falls, and stays in hospital. Last year I struggled with being angry, lonely, and unloved. I loved my husband dearly but feared that I didn't like him anymore. I didn't like the physical and emotional distance that had become part of our lives. I was just the caregiver and not his wife. I told God I was mad at Hm for putting me in this caregiver roll that I didn't sign up for. I asked God if it was possible to love someone very much but not like him after 39 years of marriage? Yes it is possible. Jesus told us in the Bible to "love our neighbor" but He didn't say we need to "like" him. Please do not feel ashamed of how you feel. You are a loving, caring person and doing your best in a very difficult situation. I wish it was possible to reach out personally to you and be your on-line friend.

Last year my husband's physical decline was very slow and after 11 months in at home hospice care he passed away in his sleep on October 7, 2020. He was 84 years old. Now at peace.

I will pray for you as you continue in the caregiver roll.
Helpful Answer (2)
Report

I thought I was reading my non-existing diary. I read many of the responces and know I'm not alone. I will cry for a minute now, then wash my face and smile and hurry off to grocery before he wakes up . I'll read more of these later and try to let it sink in. God bless you, friend. and myself and all the rest of us in this boat.
Helpful Answer (4)
Report

I feel for you. There are days I feel there is no light at the end of the tunnel and then I feel guilty I thought that way. I have two elementary school children and have spent the last 5 years in caregiving. My MIL is 80 now with moderate ALZ and is very healthy physically. But mentally she is so difficult to deal with and it is very draining. This means another 10-15 years to go and my youth and middle age will have gone in caregiving. My marriage and personal life is suffering and I feel so trapped. I wish this disease had only a short lifespan.
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter