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I suffer from some pretty severe mental illnesses as well as having a debilitating autoimmune disease. I was barely making it through a day at the beginning of this and it's worse now, even though we have home aids that come. My heart is really struggling right now, I try to keep in mind his dementia, but running out of the room to cry by myself isn't working like I thought it would. I'm scared for both of us. I don't know what to do.

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I was discussing your question with my mother's hospice nurse today, and she told me to post this poem she keeps on her phone to share with families --

ALZHEIMER'S POEM

Do not ask me to remember
Do not try to make me understand.
Let me rest and know you're with me.
Kiss my cheek and hold my hand.

I'm confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you to be with me at all cost.

Do not lost your patience with me.
Do not scold or curse my cry.
I can't help the way I'm acting,
Can't be different though I try.

Just remember that I need you,
That the best of me is gone.
Please don't fail to stand beside me,
Love me 'til my life is done.
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NeedHelpWithMom Jul 2021
Nice poem.
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I am sorry that you have struggled with this situation for so long. It takes real strength to ‘let go’ of what isn’t working. Sometimes, we assume that by holding on we are strong. No, holding on doesn’t require any ‘real’ strength. We may be holding on, due to fear of the unknown.

You are going to have to push yourself out of your comfort zone. Seek the help of a therapist or others who have done this to give you guidance

I feel your pain and I wish you peace as you navigate your way through this difficult time in your life. As stated by many, many posters, “You do NOT have to do the ‘hands on’ care yourself!” Please research facilities nearby to place your loved one. You will feel the weight of the world lifting off of your shoulders!
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He needs memory care, and perhaps you need assisted living if staying in the house on your own isn't feasible.
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This is a very difficult situation. I think you are in way over your head and totally burnt out. You can not provide good care under those circumstances, no matter how much you love him and want to take care of him.

More help at home may be a good thing but I just don't know if it's enough. Assisted living might be a better option, even though it may not seem that way at some levels.

You both need to be better taken care of.

Good luck.
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This situation isn’t healthy or sustainable for either of you. Please find a new plan, husband in memory care or in home care for you to get away.
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Consider this - he's scared, and angry because he knows something's different, mental and physical, doesn't know what's wrong, but he knows it's something. So he lashes out at the one constant in his world gone sideways - YOU. He doesn't realize how he's hurting you but in his confused mind, he's confident that out of everyone, you will understand how terrified he is. And when he sees he's upset you, more anger kicks in - not at you, angry with himself - and the cycle starts over again. Why don't you give both of you a much-needed break away from each other - take time for just you, leave the house, go anywhere, but leave the house. Do NOT feel guilt - you're not deserting him, at this point, you're surviving him and you. He will be okay with the caregiver. So, next time he goes on a rant, instead of having a tear-jerker, simply grab what you need, and leave the house - even for 10-15 minutes to start with. Your situation is hard, but sugar, you got this!!
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I am writing to you because I know how you feel. I will tell you how I came to find great relief in an adorable little bed sport which evolved due to profound need. I now call it "paper towel ball". I had been caring for my husband for many years who had severe fecal incontinence. Only those who have been through this can understand the frustrations involved in wanting to run away from these situations.

One afternoon I lost my temper completely. I was about to get hysterical when I saw a roll of paper towels near the bed. I quickly tore many off the roll. I crumpled two paper towels at a time to form one little harmless ball and began to throw these at my husband! It completely relieved my stress because I had something to throw at him that did not hurt him when it touched his body.

Much to my surprise, he took the balls I was throwing at him and threw them back at me. Not with a mean feeling, but he was so surprised by the balls, he was delighting in throwing them back at me. It was so much fun and it looked like snowballs in the air. We both started laughing so hard... it was like some sort of miracle of joy in the middle of all my stress.

I have been meaning to write an article about this for a magazine since I have not seen anything like it anywhere among all the reading I've done to relieve stress. Where are the joyful methods to help the near burned out caregivers?

From that point on I asked him permission to play paper towel ball whenever I got stressed out to the max. He said yes. I gave him his own roll of paper towels, a big basket and told him to make his own. I did the same thing. From then on when it got really tough with me I threw those balls. It worked every time like a charm. It's sort of like a pillow fight, but with only the very light balls flying through the air over the bed. They get lighter in weight as they fly through the air since they unravel slightly. In any event, I can only say I share this little experience in the hope it will help another wonderful caregiver in some way.

Honestly, I think this paper towel ball therapy would be great for healthy husbands and wives when they feel like an argument is getting out of control. I think it would work under most circumstances without harm, since as mentioned above when you throw the paper balls in the air they lose a lot of their fling power but do make it to the cared for loved one.

Prayer and patience are the key here, and living one day at a time.
My husband passed away in January (Covid) -- but because of these little flurries of paper towel balls I have some joyful memories of really stressful situations.
Just wanted to share the above if it will help at all as an interim solution.

I guess you could call this little game Paper Towel "Power Ball" :) It gives you the power to overcome a lot of stress which comes along with being a faithful caregiver.
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MargaretMcKen Jul 2021
Just love it! Thanks for sharing that trick!
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In-home Hospice helped us. We are in Texas. Not only does my wife have a nurse twice each week and a CNA for showers 2-3 times per week, but we have a chaplain and a social worker 1-2 times per month who check on us.

It sounds like you could use some extra help and counsel to come to your house. Or possibly even considering that it may be time to move into a full time care facility. I’m sure that it may depend on your financial status as to whether it is paid by Medicare, insurance or personal pay, but there are professionals who can help guide you in the best way to go. It is a scary decision, but I had friends who walked that way before and gave me good advice. They didn’t offer it, but I had to call older friends to ask how they maneuvered these things. People that I trusted from church, etc.

When it comes to your husband getting angry or upset with you, an old friend told me to leave the room and change my shirt. Come back in with a different tone in my voice. With her dementia, my wife sees me in a different way and forgets the previous conflict.

Good luck. Remember the man that you loved and married. Keep an open mind to learn the next steps. This is what I try to tell myself. As difficult as it all is, you are doing the best that you can. Be willing to find some help. God bless you both.
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Hi Mojojojo,
I write from the perspective of the patient. My most recent Neuropsych Exam says I've moved on to Moderate-Severe Dementia. My DW and I have spent a lot of time and money planning out how we would deal with my Care Plan, and a Financial Plan. We've done this in conjunction with a very TRUSTED Financial Planning Specialist, and Estate Planning and Eldercare Lawyers.
Reach out to your Trusted friends from Church and ask if any of them know a Financial Planning Specialist, and Estate Planning and Eldercare Lawyers. All of my advisors have been people we know from our Church. We are now moving on to the last part of the Legal work that needs to be done because of circumstances that have changed, that could not have been thought of before.
Prayers will be going up for you. God Bless you both.
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You describe yourself as having "pretty severe mental illness". Do you think any person who fits such a description should be anyone's caregiver? You also state that you're suffering from debilitating physical illness as well.
I'm not saying any of this with any disrespect or insult intended towards you personally. You're not fit to be your husband's caregiver and for his sake as well as your own, you should not be trying to keep him at home.
Your situation is heart-breaking and of course you want to do right by your husband and take care of him. Think about it though.
There are outside caregivers coming in. Yet you're running out of the room crying. You say that the crying isn't working like you thought it would. What did you think it would do? It's not going to help your situation.
It doesn't make you bad or a failure if you cannot take care of your husband. It makes you someone who cannot for a number of reasons be a caregiver. That doesn't mean you don't love the person. It doesn't mean that they aren't a priority to you. Your husband needs to be in a care facility or you need a live-in caregiver to move into your home.
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