How do you deal with the Guilt of placing someone in Assisted Living?

Posted by slhayton @slhayton, Jul 21 9:10pm

Does anyone have secrets on how to deal with the guilt of placing a parent in assisted living because Alzheimer's and dementia became too much to handle on their own?

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@sueinmn

@slhayton Oh, so many of us have been there!
I remember my Mom and Grandpa crying together almost 50 years ago when they had to move my Grandma, then with my father-in-law, my Mom, and finally watching my sister and brother-in-law and his siblings (so 5 of them try to manage) caring for his Mom & ultimately deciding a care facility was best.

If someone has not been the "in the trenches", they cannot possibly understand the frustration, the exhaustion, the isolation, the sheer volume of work to keep doing it every day. And in the end, it "takes a village", and that village is often in an assisted living or skilled care situation.

Maybe you can try to look at it another way, like my sister and I finally were able to do with my Mom. Mom's assisted living staff became part of our "village" Having them with her, dispensing meds, providing meals, doing the cleaning and laundry, helping her shower, freed us to manage the other parts of her care - medical appointments, managing her bills, getting her hair done, bringing her little things like her favorite cookies (that were often lost in the exhaustion of day-to-day.) So, you are now the executive, and they are your Mom's staff, and you can look at it not as "failing" but as recruiting a team for Mom.

This is not to say there won't be some bumps in the road as she and you adjust to this new normal. She may want to go "home" and just needs to be repeatedly reassured "this is home now" - point out her favorite things - pictures, pillows, etc. You and she may be unhappy that staff does not always do things your way, or as quickly as you would like. As long as they are keeping her clean, safe and healthy, not ignoring her meds or leaving her behind, just calmly reassure her. Any discussion with staff needs to be out of her hearing. Here, your mantra could be "Just because it's not done my way doesn't mean it's not done right."

Sometimes now, if I sit back and reflect, I think a lot of my sense of guilt was concern about what "others" thought - my siblings, her siblings & friends, my friends. In the end, they don't matter! Just Mom's well-being and yours.

Do you have a clergy person, a counselor or a close and understanding friend you can talk to?

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I had my mother for 2.5 years, I worked full time and as her illness got worse, I had to face the fact that the care she needed was beyond my ability to provide. During this period, I had cervical surgery to cut a space in my spine to take pressure off the spinal cord (12-hour surgery)
and 3-month recovery, and then anterior cervical surgery to remove disks and place a titanium bar in my neck (another 12 hrs. of surgery). I developed a stomach ulcer during this period so surgery was postponed. Just a snapshot of the stress and physical condition I was in. AT first my mom balked at it, but she accepted it. She made friends in the nursing home and when I could drive again I would stop on my way home from work. I was glad that the nursing home was only 6 miles away. I knew it wasn't perfect but she was well taken care of - better than her being alone all day at my house

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@jayniep

I know. After my mom died I made it a point to visit my dad for a few days EVERY MONTH FOR 12 YEARS! He lived just 2 hours away. When the rest of the family talked him into assisted living at the age of 96 the guilt took over. I was unable to participate having just had heart surgery. He died at the age of 98 two years ago and I still can’t let go of the guilt. Maybe I need therapy.

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You did what was in your power to do, @jayniep ! Do go to therapy to deal with your feelings of guilt. Big hug!

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I find myself in an awkward position that, at times, brings me feelings of unease or guilt or a feeling I can't really name.

I'm Belgian and my husband is Mexican. We've been living in Mexico for the past 30 years. My parents still live in Belgium, while my only brother has been living in the US for the past 34 years. My mom will turn 86 at the end of August, my dad is 90. They both have a variety of health issues but are still able to live at home, with some help I forced my mom to accept. In the last two years, I've spent long periods of time with them due to their health issues, while dealing with my own colorectal cancer and a complicated surgery for a rectovaginal fistula. I wish I could be more present for them, but I can't. They know it. They have chosen the assisted care facility they would like to go to the day they're no longer able to live on their own. There was a time when thinking of it broke my heart, but I've come to accept it as my moving back to Belgium is not an option, nor is it for my brother.

On the other hand, I've been taking care of my mother-in-law for the past 9.5 years. She has Alzheimer. When she moved into the small apartment we built for her next to our house, she was still able to cook for herself and enjoyed going with me to the supermarket or Costco. That changed little by little as her Alzheimber progressed. She has 6 children, of which her daughter lives 437 miles from here (568 miles by car) and has a job that makes her travel a lot; none of her children, except my husband and my sister in the measure that her job and place of residence allow her, come even to visit her.
As her Alzheimer progressed, my husband and I had to spend more and more time taking care of my mother-in-law. Some nights we couldn't sleep because of her crises. Our health started to take a toll. I had less and less time to do my job as a freelance translator. So, last year, my husband and I convinced my sister-in-law, who is in charge of my MIL's finances, that we had to hire someone to help, since she wanted to stay in the appartment. So I found a very caring dame de compagnie with experience with older people and people with dementia. She comes 6 days a week, 8 hours a day. She gives her breakfast, helps her shower, makes her go to the bathroom, does occupational therapy activities with her, massages her legs (she has bad circulation), surveys her lunch, which I cook, and keeps the appartment clean. My husband is in charge of dinner and putting her to bed. And Sunday we share the tasks. I was sure that this was the only way we would not burn out my husband and I, so I did not feel guilty. As Sue @sueinmn said, we are managers of my MIL's team, which also includes a physical therapist.

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