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?
My dad had dementia and a lot of physical ailments and was at home in home hospice for 4 months but kept falling and my mom could not help him up and did not like the aides in her house and kept firing them. He was barely eating and mostly incontinent. Constant crises. After the last really bad fall with blood everywhere, I insisted after the hospital X-ray for concussion that he go to the hospice facility for a respite stay. I was the one who had to tell him he was not going home as it was no longer safe. The next day when we visited him, he was mad as hell about being in there, being washed and changed and had his hair combed. This man weighed less than 100 lbs without the strength to stand, yet he tried to crawl out of his bed in the middle of the night, when they asked him where he was trying to go he said home.
He told me how much he hated it and how he hoped I and all the younger family members never have to endure what he was enduring. In fact, the facility and all the workers seemed very nice and compassionate to me. He did not cry though. That would have been hard. I felt bad for him but not guilty. It was the only thing that could be done.
A day or two later he developed aspiration pneumonia and ended up passing away two days after that. I was still glad he was in the facility as they could give him morphine every two hours and had a set up where he could not get out of bed and hurt himself further (which he was trying to do before the morphine.) I agree with others. Your dad is upset about being old and sick and not having agency. NONE of that is your fault. You are helping them. I wish you courage, strength, and most of all peace.
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.
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.
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.
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.
Sending you a big hug of understanding, my friend.
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 .
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.
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.