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She has Lupus, fibromyalgia, rheumatoid arthritis and recurring bouts of a A fib. She spent a week n the hospital with Afib and 3 weeks in skilled nursing. I have bouts of feeling afraid of losing her and then resent having to be her care taker and losing my freedom, I’m a very active healthy 82 and realize I’m on limited time myself and feel guilty for feeling resentment. Her short term memory is also in rapid decline.

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Foxhole82: You're very welcome.
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Lupus is a very nasty disease too, causing many other issues like RA etc.. Both my aunts had it. Since her memory is now affected maybe she would be better looked after by a care home?

That way she has 24/ 7 care and you can enjoy her company when you visit instead of resenting time spent caring for her many needs. You will feel better having had time to do things you want to which means you’ll be able to be supportive when you visit without feeling guilty.

At the very very least you should get respite care for her so that you can have a much needed break.
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Yes, guilt is part of my journey. Of course I have guilt because I have expectations of what I "should do". With the help of friends and therapy I realized that the "should do" is me adapting others' expectations of what a loving partner should do. I was an accidental caregiver; a reluctant caregiver. When I became honest with myself and realized I could decide if I wanted to be a caregiver or not. That decision, I later understood, gave me power. Finally I made a decision to be an intentional caregiver, to embrace the role, to stay and do what I could, imperfectly. From that decision I received clarity, I had purpose (intentional and clear), and some of the stress was reduced.

The decision to stay, the decision to fully embrace the role was and is my salvation. It took about 4 years to realize that and to gather information and cultivate acceptance about the 3 terminal illnesses that my loved one has. And as many caregivers here have mentioned, I started to craft a life of my own, along with engaging in support groups and learning how to ask for and accept help. I see my role as a caregiver as a sacred role to help someone who can't return "the favor". It's a higher level of love; a selfless love. Seeing my role from a different perspective allows me to rise up out of the angst, resentment, and guilt, at least temporarily. It's an everyday practice; and it helps. I hope it will help you.

Blessings,
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My husband of 50 years has multi infarc dementia. I have been taking care of him since 2005. If your budget will permit you to hire a caregiver a few days or hours each week it will be more helpful than you can imagine. Go play golf or whatever makes you happy. Also, counseling has helped me. I try to do something good for me each week. It’s ok to look after yourself and won’t make you a bad person to get out. Hope this helps.
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Think about this, what happens to her if you get sick? Do you have a support system in place that can step in to take care of her is you get a bad cold, an injury, or end up in the hospital? My mother, a nurse, always said it was not uncommon for an ill spouse to outlive the caregiver spouse!
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Foxhole82 Sep 2019
Yes I do her sons live here and do help out when needed
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Well, sir, one thing is a given and that is at age 82 yourself, the fountain of youth ideaology was debunked years ago. So - you're brilliant to know that it's going to get harder to care for your wife. That's a whole host of health issues. Seek out a psychiatrist for yourself, who can give you a low dose anti anxiety RX med. Prayers sent to you, sir.
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Foxhole82 Sep 2019
Thank you
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Itsnormal to feel you are looking your freedom. My hubby is totally holding me back as well, but I have to learn to stop feeling guilty for my feelings, they are real. Now I'm lead ing that I need to forgive me, and do what is necessary to care for him. I understand and realize this is going to take time.
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You obviously have taken care of your wife in the past and it is obvious she has problems and is going down hill rapidly. Personally, you are 82 and who knows how long you have. For god's sake, get help for her or place her - live YOUR life to the fullest while you still can. If you don't do that you will lose your chance. Please think of yourself - you have no reason to feel guilty. Don't lose the chance that you still have for someone on the way down and out.
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Foxhole82 Sep 2019
Thank you for your support and understanding. Side note.. her sons took over so I could attend an out of town motorcycle rally
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Great question. I personally needed to see a therapist that I could talk to about all of my conflicting feelings. I would also reach out to your local senior services or council on aging to learn about resources to help you out. Best of luck!
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Like others have responded, find a therapist to talk to that deals with caregiving, burnout and depression. I started only 2 weeks ago and I've found a few things that I never thought were part of why I'm feeling like I am and responding to others that way I am. It's gonna be a long road for me but if you get someone now to talk to, it will help you immensely. You need to take care of yourself first to take care of her the way you want to, with all the Love in your heart. God Bless
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You should not have to be her caregiver. Get home care or look into ALF.
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No matter your age self-care is key to being able to cope properly with all the feelings and emotions you are experiencing. it is also key to being the best caregiver you can be.

Give yourself permission to experience these feelings, and own them. Don't feel guilty for them. Taking time for your own mental wellness and even physical wellness will help reduce feelings of guilt.

If your wife has encouraged you to take care of yourself, you will be a blessing to her if you show her you are.

Praying for peace for you and strength as you care for your loved one.
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Foxhole82 Sep 2019
Thank you
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I see a therapist who has a specialty in geriatrics. My husband was diagnosed 6 years ago with early onset Alzheimer’s at age 60. We saw her together until it was meaningless for him. I do find it’s helpful to have someone who helps you put things in perspective. Best wishes- it’s a lonely journey for sure.
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Join a support group for yourself. I took a NAMI family to family class for 12 weeks, and I attend a spinoff support group with NAMI every 1st and 3rd Tuesday of the month for support. I was told that I should have gone to an Alzheimer's group instead, but going to the place where I obtained the phone number for the Alzhiemer's support groups meetings netted me no return phone calls from them along with no information from the online attempt, so I stick with NAMI. I learned a lot from them. NAMI stands for National Alliance on Mental Illness. It is nationwide.
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I can understand your feelings. I am in the same situation you are in. My husband is solely dependent  He has Neurology which put him in a wheelchair. Also has  mild Parkinson's and some dementia.  I too, have mixed feelings. Some days I am so happy to be with him and take care of him. I would miss him terribly if he goes to a nursing home (which he really needs) Other days I am resentful. I cannot leave him too long, he cannot get to the bathroom by himself. He cannot prepare a simple sandwich. I too, feel repressed at times. I am 80 and people do not believe my age. I am healthy and strong, and attractive and feel some of my life is being swallowed away Maybe this sounds conceited of me but it is how I feel. I love him dearly and am sooo confused. You are not alone with your feelings.  We just keep chugging along. There's no answer.
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CaregiverL Sep 2019
Happy, you didn’t get help yet?!?
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Boy, all the diseases that go with a bad immune system. Seemsvwhen u have one, you get them all. If its getting too much for you mentally and physically you may want to consider a nice AL if the money is there. I would check to see if Medicaid pays after private paying for at least two years and then running out of money. If she is beyond an AL, talk to Medicaid. Depending on finances, you maybe able to keep some of your assets and spending down what is considered her part. That way you won't be impoverished.
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Foxhole82 Sep 2019
I have a long term care policy. Takes about a month to determine if she qualifies. Then 90 days deductible before they will pay anything. After 66 thousand in premium payments, but at least there is some coverage
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i can absolutely understand how you feel. I did it for over two years. As she got worse I was restricted to where we could go. Eventually I hired a companion for her so I could go somewhere. Usually that would be to a store for food or special needs for her or me. there were only two friends that ever visited. The other visitors were the OT, the Pt and the nurse.
Feeling guilty is normal. Even when I did get out I worried, a lot. Near the end I was so worn out and starting to feel the pain of lifting her and started to think about putting her in a home. Unfortunately she took a turn for the worst and passed shortly after that. I still feel like I did not do enough for her.
As others have said here, even if you put her into a home of any sort, you can visit her as often as you feel there is a need or desire.
When she was in the hospital and rehab I was there every day and helped the staff with her needs.
I was then able to go home, late in the day or night and get some reasonable sleep so I could it all over the next day.
I think you should look for a day care to free you up for a little R&R.
Oh, I forgot, I just turned 72 and starting to get out in public again. Still no real friends though.
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JoAnn29 Sep 2019
72! I thought you were older than that. My husband is your age. Yes, you still have some years ahead of you. Take it slow, though. Those Senior ladies will be after you. We had that with a widower and recent Widow at Church. She went after him and caught him but I hear he was a little overwhelmed by it because she took over. He like you did for his wife till he no longer could. Heard he was at the NH for lunch till dinner with her. He had great support from the Church ladies. They would sit with his wife when he needed a break.
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I work in a Memory Care Assisted Living community as a receptionist. There are quite a few gentleman who've placed their wives in here and come visit TWICE a DAY, taking them to dinner and sometimes even lunch. They come every single day, they visit, they take walks around the grounds, they take drives, etc. They haven't 'abandoned' their wives; instead, they've chosen to provide a safe haven for them 24/7 where their needs are tended to, but where they can also have lives of their own.
It's something to consider if things get to be too much for you.
All the best
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Foxhole82 Sep 2019
Thank you
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Does your wife need or expect your care 24/7 or do just feel that is your obligation? Can you take time for some activities of your own? If she needs constant care or supervision, you might be able to find an Adult Day Care program a few days or hours a week. If she can manage at home alone, does she object if you leave for awhile?

Yes, you will feel devastated and adrift for a while if she dies before you do, but most of her ailments do not sound immediately terminal.
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Sounds like you are swinging back and forward from feeling like you have no time for yourself and your interests, and then realise time with her is also short. It sounds like you might even be experiencing panic? If so, try to slow down and not project into the future. Stay in the present moment, and take one day at a time. Definitely schedule in some "man cave" time by spending time of your day tinkering or whatever you enjoy. You need this time to regenerate and retreating into your cave will definitely restore some of your lost energy and will be very nourishing to you - which is what you need right now.
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I can identify with your feelings completely. I have been dealing with my husbands dementia for over a year. At first I was so involved with learning as much as I could about dementia and caregiving that I didn't recognize the depression that was creeping in. I found myself sitting In my recliner all day long, day after day for over six months. I finally made the decision to get some home health care 3 afternoons a week. This allowed me to get out of the house and be my own self a few hours 3 days a week. The cloud lifted almost immediately once I knew my husband was safe and well taken care of.
Yes it is expensive and it took a while for me to decide “I” was worth it but I am now happier for myself and I don’t resent my husband for getting sick. He will not get better, but I can now face the future knowing that there is life to live. Maybe not the way it was but still worth living.
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Guilt is an emotion without a useful purpose. It serves only to worsen an already difficult life situation, that is to say, most people would empathize with your situation and offer compassion and understanding. Guilt only serves to prevent you giving your self the compassion and understanding you need.

See that what you feel is normal, that there is bound to be some ambivalence about the situation, that you are only human, that you have needs, that it's ok for you to want to live your life and do the things you enjoy.
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It might be that it is getting too much for you.  You've done well, and putting her in a NH or memory care does not mean you abandon her.  Good luck deciding, it is never easy.  We also do piecemeal grieving as health is taken away.
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Foxhole82 Sep 2019
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You really have nothing to feel guilty about. You have love and cared for your wife for many years (including when she was healthier) and you have gone as far as you can in taking care of her. Her health is above your pay; in other words, her needs are far beyond what you can do! I believe some times loving someone is letting go of them. I don't mean for you to walk out of her life and never see her again, but perhaps it is time to have professionals take over her day-to-day care and needs then you can visit her and just support and love her. Yes, this is easier said than done, but really, what is best for both of you? Resentment is not a good feeling to have for the one you love!

I really am sorry that you are in this terrible situation. It is a tough spot to find yourself in.

Live your life and take care of yourself. Every thing you are feeling is normal!

Others will show up with better advice.
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I dont really have any help to give other than to say you sound pretty normal.
I felt the same way when my mother was in the hospital and rehab
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