I don’t know how much longer I can do this!

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I don’t know how much longer I can do this!

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I have been caring for my husband for 18 years, although the last 3 have been the worst. I am so tired of cleaning his toilet, his butt, helping him up and down, in and out of the car, going to endless doctor appts, etc.

He has too many ailments, bad liver, Parkinsons, diabetes, walks poorly with walker. The last week has been the worst. He has problems turning around, it’s like his right leg is stuck to the floor. I dont know where to turn? Right now I’m waiting for doctor to call with lab results. I’m hoping for a UTI so he can get antibiotics and hopefully get better. I feel my own health going down the tubes. I’m 69, just retired in April, and want to be able to do things for myself! Don’t know where to turn!!

Burnout Family Caregiver Spouse

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Yes, call the VA in your County. Your husband needs more care than u can now give him. I suggest LTC, not an AL. With an AL you still have responsibilities. I had to buy Moms Depends, her personal needs, etc. LTC you pay for nothing. His laundry is done, he is fed, given meds, has personal items given to him. Big thing, no more paying for Depends. They get a Personal Needs acct where (in my state) its $50. This can be used for clothing, candy he likes, etc.

You may want to talk to Medicaid. You could become a Community Spouse. Short story...your assets are looked at and split. You can then spend down his half by putting him in LTC. When his split is gone, then he goes on Medicaid. You can stay in the home and have a car. You will have enough to live on. There is more to this.

Good Luck.

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You’ve been on a long, difficult journey with your husband for a long time. He has many health and cognitive issues and it’s discouraging to realize he won’t experience any improvement in his health. I know from experience how difficult it is to keep all the plates spinning on the poles. My husband spent three months in a rehab for therapy for his mobility and he made great progress. But since he’s been home, I can already see him backsliding. Peeing the bed again instead of asking me to get the urinal. Getting out of bed, but not pushing himself to walk that one extra step. I work and have after-work obligations and I am just too tired and sore when I get home to care about pushing him to do things.

You know Cardell, if you don’t look out for yourself, no one else will. It may be time for you to be a little selfish. A lot of facilities will give you a week of respite free of they think you’ll place your loved one there. Or, since your husband is a Veteran, maybe it’s time to investigate the VA for placement. Only you can decide what’s truly important to you and how much more you are willing to sacrifice for him.

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Joy, I obviously don’t know your hubby but sometimes he makes me want to scream! Put that urinal in the bed with him, somewhere that makes him a bit uncomfortable! 🤪

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I believe you should start putting yourself first & letting someone else take care of your husband.
I know that might sound selfish but sometimes in life we really need to be selfish & put ourselves first, which has always been hard for me to do.
After taking care of my mom for 3 years, she had so many ailments, could barely walk, fell alot, diabetes, kidney & heart failure, had to clean potty chair or change diapers. It was awful watching my mother suffer & after she passed away in February, I have thought about it so much & if I could go back in time, I'm really not sure if I would make the same decision. I dealt with everything pretty well for the first 2 years but the last year is when I wish I had put her in a home because I started resenting my mother & couldn't handle taking care of her in the shape she was in & it took so much just to take care of her that I neglected my own health & became very depressed.
You have taken care of your husband for 18 years & you deserve to live your life too! After 18 years you definitely should not feel guilty no matter what you decide.
Put yourself first which I assume you rarely do.
I feel for you and wish you all the best

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First, you are a ROCK STAR for having cared for him this long! Many people get overwhelmed with care giving and lose themselves to their loved one’s illness. 40 percent of caregivers die before the person they are caring for. It’s one of the most stressful jobs and it not recognized as a job. This is my point and should become the caregiver’s mantra: “You must give to the caregiver so that the caregiver has something to give to the cared for.“ I learned to take trips. At first it was a weekend every six months, then four months, then three months with a major vacation once a year. Then I put my husband in a care facility for the last two years.

I would also like to comment on other people’s suggestions. Unfortunately, care is not standardized across the country. Adult day care may be wonderful in one place, not too good in another and non-existent somewhere else. Costs for in-home care assistance is vastly different depending on the minimum wage and cost of living in different areas. You’ll need to do a lot of research in your area as to what is available. Support groups can be very helpful because many have been through what you are going through now. You have not mentioned that he has any form of dementia so it may be harder to find a caregivers support group.

The good news is that your husband was hospitalized. You should speak to your doctor and the hospitalist. There may be a chance that he can be placed in a nursing home. A Veteran’s home may be your best bet, however, you may not have one close by. The nearest one to where I live is in the next state over, 6 hours away. Don’t cross off that possibility because of distance.

I will mention here that I placed my husband in a facility three (large!) states away where there was family available and the cost was half the price. He had dementia and didn’t usually know who I was. He had excellent care and I visited every three months until he started getting ill all the time. This year I visited 8 times in 7 months and then he passed. He had trouble swallowing and then stopped breathing. I was able to place him on hospice for the last month. The hospice nurse called me every time she visited him. I knew when he stopped eating and was able to set up final arrangements before he passed. I’m glad I had done that because he passed on July 4 and his body had to be removed within 4 hours.

This goes to everyone reading this. My biggest suggestion is to make sure you have all the legal paperwork done; power of attorney, medical power of attorney, DNR, will. Check all beneficiaries for financials, life insurance, etc. Even if you think it’s all done it’s worth it to double check. If he is still considered competent to sign legal papers, please get them done. It will make everything easier as he nears his end of life. While he’s in the hospital meet with an elder attorney. It’s worth every penny.

I wish you peace and patience as you travel through this journey. Give to the caregiver! It’s not selfish, it’s necessary.

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Thank you for this very wise advice!!

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I am new to this site and can only echo the wisdom of those that have replied before me. The best advice that I was given was “take care of yourself.” Last week, while I was feeling particularly overwhelmed, I had to got to the Post Office. On the wall behind the Postal Worker who was waiting on me was a small card. It read “Be gentle to yourself” Those four words jumped off that wall and helped me. I have also been told it is okay to set aside a period of time, 10 minutes, 20, whatever you need and allow yourself to grieve or rage or just cry. Then, look around for something to be grateful for. You just be applauded for what you have done! You are not alone and know that you will be in my prayers.

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You know in your heart of hearts that it is time to place him somewhere. It was probably time 10 yrs ago. You have nothing to feel guilty about, so don't even let that enter your mind. All of those facilities out there have things that you don't...special beds, lifting equipment, multiple people, around the clock assistance. If your husband is still mentally cognizant, then he will understand when you tell him that you are tired and physically unable to manage his care. Hopefully, you can find somewhere close to home so that your visits are not hard to manage. You can keep involved in his care by doing his laundry and buying his personables and visiting especially when he sees a doctor. Making this decision does not mean that you love him any less. It means you are his wife and you are making good decisions for your husband. It is a kind thing you can do for him and yourself. Talk with his doctor and see if he thinks his care requires assisted living or a nursing home.

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I hired a caregiver when my husband was ill. It was a lifesaver. I was trying to take care of him and run our accounting business. It got to be too much. At the end and after his death I took a partial leave of absence. At the very end, I hired RN’s to care for him. They were able to give him medications per his physicians instruction and provide all the care he needed. I also had Hospice. Together, he was kept comfortable and made it so that I could spend time with him and not be worn out from the caregiving duties. I could not have done it all be myself. I admire all of you who are able to do the caregiving.

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an update: He was admitted to the hospital yesterday. It was so hard for him to move his right leg, the doctor said it wasnt safe for either one of us to take him home. They have and are running tests to see whats going on. Anyway, its a break; hes in good hands for now. I neglected to say that he does have home health twice a week for two hours courtesy of the VA. I do try to get away during that time. that and my church family is my solace.

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I too have to work with the VA MY HUSBAND is 100% disabled. Not that thrilled with their treatment ways and lack of communication. But please let me know how that all works out. I hope he gets better and that they have recognized that being at home is not the best place for him.

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The doctor told you that it wasn't safe for EITHER of you for him to be at home.

Hospice is NOT full time care. He needs to stay in Long Term Care for HIS safety.

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As much as you’d like to do it at home, I would have to advice NOT to do it. Yes, he’s your beloved husband and is doing better in rehab. Do you know why he is doing better? It’s because he is being cared for by a professional staff.

I have no doubt that you are sincere in wanting to help him but PLEASE be honest with yourself and admit to yourself that you are not a professional.

Read your title of this post again. Your own words speak for themselves. You say that you don’t know how much longer that you can do this.

Watching someone decline is heartbreaking. I feel your pain. The truth is that all you can do is step aside and let others do the heavy lifting. You are doing your job by offering love and support.

I too cared for a person who suffers terribly with this hideous disease. Parkinson’s disease is a progressive neurological disease with no cure.

Hugs and the very best wishes for you and your dear husband. Take care.

I don’t know how much longer I can do this!

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