Cycles of doubt

AlzWife2023 · September 29

This seems to happen every few weeks or even every ten days or so. I’m sure it’s a sign of burnout, but I want to run away. I want to be alone. I want to enjoy my home and my time, which are no longer mine. Like every other carer, especially spouses, my life is no longer my own and I cannot predict if or when it will ever be mine again. I spent from my teen years until now caring for my brother then my children and now I’m alone with my spouse who lived a carefree and adventurous life before meeting me, then settled down late in life with me (and, I hate to say it, but I’m left holding the bag). I don’t want to be be angry or bitter. I think I’m kind and accepting 90% of the time, but on days like today (which are too frequent) I just snap into hate mode! I realize that I'm not guaranteed anything, my health could fail, I’m starting to feel vulnerable. I want to have fun. At the least, I don’t want to be tormented every day with the same questions and refusals to shower etc. to only have a good day if I’m 100% positive and all giving, etc. I would like someone to make me a cup of tea or at least to make one for myself without being interrupted or harassed about the weather etc. I deserve to sit on the sofa for a few hours and read, for goodness sake! I can’t imagine putting DH in a home but I’m getting really sick of him. Is the rest of my life going to be a rollercoaster of service interrupted only by infrequent and temporary distractions. I gave up my career and my freedom. I have no money and barely the mental energy to work a few hours a week to keep myself in the loop and earned some desperately needed cash. Forget about feeling loved and cared for, having help, having a partner, or having a future. It’s two years since I gave up work. He’s 81 and I’d say early stage 6. He’s gotten more frail but he ambulates and is continent. He’s very comfortable at home. He’s got me full time and our three adult children who rotate to help him/me, but I end up cooking for them and feeling bad that they spend their days off here. They’re our kids and I accept their help, but I also want them to be happy. We’re all tied down to this caregiving job & we know it’s the right thing to do. We love each other and we’ve agreed to this but it’s so, so hard.

He’s got the nice bedroom and I sleep in the basement. What’s next?

SusanB-dil · September 30

Oh, wow, I sure hear you!

Yes, you do deserve more. I would make you a cup of tea. ((Hugs))

I HATE 'this' !!

SDianeL · September 30

we totally understand how you feel. This is a terrifying and heartbreaking disease and requires 24/7 care. Glad your children are helping you. When they come to help please go somewhere and do something you enjoy. It will really help. Have you looked into memory care facilities? Things will get even more difficult soon as he becomes incontinent and bedridden. Sounds like you have some difficult decisions to make. Hugs.

Arrowhead · September 30

I placed my wife in memory care a year ago. On one hand, I enjoy the freedoms that I now have. I can do whatever I want, whenever I want, and don't need to find someone to stay with her. However, there are times that I wish she was still here, and I second guess my decision. There is no perfect solution to this disease. Keep this in mind; you will have regrets, no matter what you do.

midge333 · September 30

I think we all feel at least part of what you are feeling. I retired early to be a caregiver and have given up nearly a decade of my life doing it. I want it to be over both for my wife's sake and my sake.

Palmetto Peg · October 1

My DH was in the Geri-psych unit for two weeks and now has been in Memory Care for almost 1 week. I am second-guessing my MC decision all the time now because I am so lonely! It is so quiet in the house and it is hard to sleep without him. On the other hand, I know this is best for him and for me, and I am sure I will get used to it. When he was with me, I almost hated him at times because I never had a minute to myself, and he was getting increasingly more aggressive and difficult. He is on some new meds and seems calmer now, but when I visit him he still asks me the same things over and over and over, and I know he is getting more attention there than I was able to give him. This disease is so terrible. There is just no way to be at peace with any decision. Hugs to you and all the other caregivers doing this!!!! I hate it, too!

AlzWife2023 · October 4

https://alzconnected.org/discussion/comment/224307#Comment_224307

thank you for the reminder

Good luck

ssreyn · October 4

This is exactly how I feel too! I'm caring for my mom, who has AD, mild so far, and my brother, who has intellectual disabilities, autism and (more recently diagnosed) Tourette's syndrome. They drive me crazy all the time. I am irritable and angry, and I hate that about myself. Most people think of me as a kind, patient and understanding person, but that's not how I am with the two of them. My husband is also impatient with them. This isn't good for any of us. Is there a way to look at the situation differently? To get a different perspective? I feel that if my mom were worse off, I might be more understanding. Or if this were a job, I could be more patient. Any ideas? It does help to write it down here.

pamnc123 · October 6

wow - this hits home. my mom as mid-stage Alzheimers and I'm an only child. Family… not many around the area … and the ones that are are barely helpful. I'd say pretty much not at all. I get so upset with myself. I still work and my commute is 45 minutes and mom lives 35 minutes away in the opposite direction. She refuses to sell and move in with me. (might be a blessing in disguise). And I just wrote that and feel guilty for writing it. I have my own home, I'm single, have horses at my home and dogs. I am very active and love to hike, ride horses and bike, and travel but that is all going by the wayside. I'm severly depressed. I work mon - thurs in office and friday at home. So I have three days where I don't have to drive to a job that I really don't like but it pays REALLY REALLY well… and those days are to take care o my place what little I do, and take care of mom the rest of the time. She's difficult and passive aggressive, has accused me of stealing and all kinds of other horrible things. She complains 1000% of the time…. it's mentally debilitating. She can't drive anymore, I got that taken away once she had 2 wrecks and totaled 2 cars in a 2 year period. She won't accept help except me. I'm thinking i need to get some therapy or I may just shut down. Two weeks ago I got covid and had to stay away and even though I was sick - it was nice to have time to myself. This disease is pure evil.

SDianeL · October 7

https://alzconnected.org/discussion/comment/224627#Comment_224627

I cared for my husband with dementia as long as I could. I stopped looking at him as my husband as we no longer had that relationship. I looked at him as my patient and me as his nurse. That way I didn’t take it personally. It’s the disease. They can’t help it. Learn all you can about the disease and how to care for them. If you are unable to do so, it’s no shame to place someone in memory care for your own mental well being.

GothicGremlin · October 8

I could have written your first few sentences @AlzWife2023 . I wanted to run away so many times while I was caregiving for my sister. But of course I could not, and would not, do that. I certainly remember that feeling of can't I just sit quietly for a day without talking to doctors about Peggy's meds, dealing with her memory care facility, and worse, EMTs? Every day there was something, and by the end I was burnt through and through.

I don't know what your money situation looks like, but maybe talk to an elder care attorney? Contemplate memory care? It was hard enough to place my sister, it must be much, much harder to place your husband. On the plus side though, if you find a good memory care facility, he'll get good care, have structure, activities, and you can go back to being his wife, not his full-time caregiver. And - even though he's in memory care, there is still much caregiving to do. But you get to sleep at night.

I tried so many things to to try to combat burnout. Music was (and is!) good for me. It was good for my sister too. Going to the gym (if you can find the time) was, and is, good for me. I also had a therapist I saw once a month. But really, anything healthy that helps you cope is good.

P.S. If I were anywhere near you, I'd bring you a cup of tea. You more than deserve it.

Mama’sGirl · October 11

I totally understand, it’s a hard job that we do. But Love keeps us going, although it’s very hard. I have and understand those not now days, when I want to scream or pill my hair out. Your feelings are totally normal, you’re human . I’m finally sipping on a cup of coffee that I fixed two hours ago. Praying for you.

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