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I visited my parents yesterday who have been in an ALF for three months. I moved them there when I realized my mom with stage 5-6 dementia and mobility limitations was unclean, not eating well, and not taking medications properly. Dad, who had been her caregiver at home himself was showing signs of dementia, not showering, getting lost driving around his hometown, and was not paying his bills. Both had become double incontinent and were wearing soiled clothes. Dad was having problems breathing, which I thought was from worsening COPD, but I took him to the doctor and he was diagnosed with CHF.


They both fought against moving to the ALF. I asked them just to give it a try, and planned to keep their house maintained for a few months in the event things became too unbearable for them at an ALF. I figured however once they were living there a couple months they would settle in and realize the benefits of consistent medications, healthy meals, social activity and support from caregivers. But, no. Each time I see dad he states "he was doing fine at home on his own" and "once he moved in with all these old people, he went downhill". He claims I did this to him. He says he hates all the people who come in and out of their apartment.


He sits on the sofa all day barely moving. He looks awful. Mom is confused. Due to dad's double conditions of COPD and CHF, he seems to struggle with physical activity which makes even going on the shuttle trips to the grocery store impossible. His balance has gotten worse and he needs a walker now. He has fallen a few times, and needs to call for assistance to get up. He is dependent on others for everything now. He sees nothing good, no advantages, no benefit.


Yesterday during my visit, he cried. He said he knows he is dying. He has not been given a terminal diagnosis, but likely assumes it could happen. He was independent his whole life, and said he cannot believe this is how it is going to end. He told me to never let anyone do to me what I did to him. He lowered his head and cried.


I asked what I could do to make it better for him. I told him I knew he was unhappy. I asked what he wanted. He just sighed.


I cannot get that image out of my mind. I feel like I destroyed my dad. I feel like I ruined their life. Logically, I believe I helped them and prevented them from a worse demise. However, they do not see it that way.


How do you get over that?


IMO, longevity isn't all it's cracked up to be. Would that life-extending research be concentrated more on QUALITY of life than quantity. Most human bodies (and some minds) are not in very good shape once they pass 85. I'm 87 and know of whence I speak. I probably should have made my Final Exit 3-5 years ago, but I didn't. So here I am figuring out how to live what remains of my life without having an adverse impact on anyone else's life!
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PeggySue2020 Jul 13, 2024
My mom turned 88 last month. Shes the same exact way.
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You did not make your father old . Old age is doing this to him even though he’s blaming you . Is Dad on an antidepressant ? sometimes it helps calm them down .

My mother did the same , blamed me for “ doing this “ to her .
I told her , “ Age is doing this to you , I didn’t make you old , and I can’t fix old “ .

My FIL kept insisting he didn’t belong in AL either with all these “ old people “ .
We just kept telling him that he “ needs to be where there are nurse’s “.

Sorry . Your story is very familiar . It’s very difficult, I know . You can’t make him happy . No one can . What you can do , is perhaps Dad would like to talk to a clergyman or therapist instead of unloading on you about his feelings .

My FIL was very similar , he assumed he would be independent forever , and proclaimed he was independent the whole time he was in AL . So much so that I hate the word “ Independent “ .

You can’t get through to them when they have dementia , yes it’s horrible when they think it’s your fault .

My mother and father in law both realized they were declining a few months before their death . Mom was ok with it , came to acceptance . FIL was not , he was upset and anxious . He was very angry when he could no longer walk , as to him that was his independence gone . He also expressed disbelief about his life ending the way it did .

You have to cut yourself slack , take one day at a time , cut back on visits a bit , make them shorter . Dad may not be as upset when you aren’t there . You may be a trigger .

I wish I had ideas to make this better .
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Reply to waytomisery
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It is a very difficult thing to watch a loved one so unhappy and defeated. Please do not feel that you destroyed your father or ruined their life. You did the best thing for them, you cared. You provided them with the best and safest living conditions for them. You are a wonderful child to have the ability to act in the best interest of your parents.

I would suggest going to therapy (even through zoom) to work through your grief. A strong support system is much needed and will be a benefit because there will be more stressful times ahead because the aging process sucks.

Good vibes to you.
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Reply to AMZebbC
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I witnessed my mother cry my whole life, I was pretty immune to it. But witnessing my father cry? It tore me apart like nothing else. Worst thing on earth to see. You feel like you'd move heaven and earth to fix it, but you can't. It's all in God's hands now.

Sending you a big hug of understanding, my friend.
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sp196902 Jul 12, 2024
"It's all in God's hands now." If it's in God's hands and he's letting these two people suffer physically and mentally like this while they wait to die, then God sucks.
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This may have already been said, but I'm going to say it again.

You did not make your dad sick!

You did not make your dad old!

We often think we feel guilt, but most of the time, in these cases , it is not guilt. It's just plan grief.

They become like children to us. The difference is instead of watching there first steps, we are going through there last steps. It hurts , it hard, trust me , I'm going through very similar thing. So I know what I'm saying.

Guilt is if you did something wrong, you did nothing wrong! You did right by making sure your parents are some place safe!!

You will get past this, because In your head you know you did the right thing. It's just your heart hurts.

Best of luck, from one caregiver to another. This is one of the hardest things to go through.
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GingerMay Jul 13, 2024
Thank you. I agree with you. I also agree that I am feeling grief. The reality of a near life ending event being close, the reality of the toll the disease is taking on my parents, the reality that I cannot make any of it better is something I am grieving. Thanks.
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GM, you added to your post since I first read it. Dad is lashing out at you bc of their circumstances, not bc you "put them" anywhere. My mother used to say to me constantly, " who ever thought I'd end up HERE, in this place, like this?" What she was saying was "who ever thought I'd live to see 95 and get dementia, CHF, neuropathy AFIB and be in a wheelchair. I'm afraid to die and have no faith in anything." So she lashed out at me who spent a ton of time and energy making sure she and dad were comfortable while they complained and blamed me ( mostly mom, not dad). She lived in Memory Care Assisted Living at the time and I was killing myself to keep her OUT of Medicaid SNF living with a roommate, shared toilet and a curtain between them.

Tell dad you love him when you go visit and you've done the very best you could for both of them. If you were able to spare them their grief, you'd gladly do it, but you can't. I'd get a hospice evaluation for both of them. The anti anxiety meds are very helpful. That's all you CAN do. And pray for an end to their suffering, as I did for my mother.
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GingerMay Jul 13, 2024
Thank you for the comment on the Hospice Eval. I agree 100%. I did indeed speak to the doctor at the ALF who sent the recommendation to a Hospice agency I wanted, then Hospice and I talked to schedule the eval. They required I talk to dad about it before they arrive, and when I did dad said "he had to think about it" and was not sure he wanted that. I think he is afraid he will die when Hospice arrives. Later that evening, my sister took dad to ER for some type of treatment (I do not know what specifically) but he was not admitted and returned back to the ALF. He said a doctor at the hospital checked his heart and lungs, and said he was fine. So, my initial attempt to bring in Hospice was interrupted.
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Please don't feel guilty about your decision. You did what you did out of love, not malice. I am sure it was not an easy decision but they could no longer care for themselves or each other. I had both my 95 yo parents in a NH together. It was a sad decision but they received better care there than my siblings and I could have ever provided. I am okay with what we did.
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Reply to Hothouseflower
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Of curse they don't see it as reality. Approaching the end of your life is never pleasant or happy.
Not your fault they got old and sick. Out of your control, not your fault. Of course you are sad, you have a heart.
They may have seemed "better" at home, but once the background is removed, the reality shows.
Cry it out and get it out of your system.
You did exactly what was responsible and right for them. They are lucky to be together and have a great daughter who did what was needed.
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Reply to Dawn88
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I know how this feels my mother can’t recognize her issues and wants to go home.

dementia takes away his ability to make good decisions. You just have to remember that you are doing what is best for them.

I did the opposite of what he said. I’ve made my loved ones promise they WILL put me in a facility and not ruin their own lives trying to take care of me if I get dementia.

Try to imagine what that conversation would have been if your father had all of his cognitive abilities intact and knew how your mom was suffering.
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Reply to Lovemom1941
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The exact same thing would probably have happened had they stayed at home with caregivers.
That happens with dementia.
And that happens with any chronic disease.
They would not have been safe staying at home.
Your dad was not capable of caring for his wife and I doubt that he would have fared well if you had placed mom in Memory Care and left dad at home.
Would they get more attention and maybe be more active if they were in Memory Care rather than AL. AL sort of leaves residents to do as they wish. It seems that they do not encourage residents to join activities. On the other hand Memory Care staff seem to encourage residents to join in, get more active. Maybe because it is usually a smaller population and the ratio of staff to residents is a bit better.

You did what you needed to do to keep them safe.
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