I am not handling this well for sure. I get so angry at my husband that he does not seem to know anything anymore. He has become almost 100% dependent on me. He does bathe, dress and make his bed everyday, but other than that it is all on me. If I do not make food and take it to him he does not eat. He cannot even do a simple task anymore. He cannot drive anymore, I have to take him everywhere he has to go. This man was the most intelligent person I have ever known and now he is like a child. I know I should be more compassionate, but I just feel so stressed and cheated all the time. I know that I still love him, I am just not sure if I like him very much. I know some of this he cannot help, but I do think he acts dumb sometimes just because. He is 84, and his mother and grandfather lived into their 100's. I am not sure I can handle this for 20 more years. My retirement years have been stolen from me. Of course this covid stuff has made it even worse as we just stay home all the time. Our daughters are so busy with their work and own lives they do not visit very often and cannot really offer help with him. He won't let anyone come to the house to stay with him. I have put tiles on his wallet and other things that he loses everyday, sometimes more than once a day. He constantly goes through his drawers and closet in his bedroom, moving things around everyday. I know he feels useless and I try to get him to help me at times, but he just frustrates me so I usually end up doing it myself. I have to say that I am 13 years younger than he is. I am sure this has a lot to do with my feelings of being cheated, as he has been retired for almost 20 years, me only 4 years and it has gotten so worse in the last two years. We were supposed to travel and enjoy retirement and he hates leaving the house and complains all the time we are traveling. I know all these things come with the disease. I am a retired nurse and most unfavorable jobs was in the Alzheimer's unit and guess what here I am in my own private one. I use this forum to vent, I have tried to find a group here close to me, but there are none within 40 miles. Of course with covid it would not be a very good idea either. Thank you all for listening to me. I feel so ashamed that I feel this way, but when I look at him I only see 20 more years of stress.
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.
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
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.
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.
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.
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.
You need to rest. And memory care isn’t cheap!
You have absolutely nothing to be ashamed of. 24 hour care 7 days a week is very hard to do!
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
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.
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!
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.
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.