Grief and guilt after moving parents to ALF, how to deal?

TrumpetSwan

Last month I moved both parents to an ALF. I did research in advance and found a nice place close to both their kids. Initially, I felt relieved. One month on however, I feel mostly grief and guilt and am surprised. Is this common?

Mom has mobility issues and AD for nearly seven years. Parents now are 86 and 89. What pushed the situation over the top was that dad began showing clear signs of AD in the last year. I could tell both had stopped bathing regularly, they were not grooming or eating well. The house outside looked fine, but inside it was un-clean. I noticed both had become incontinent, and saw soiled depends piled up in the garage. Dad was then diagnosed with heart failure and advised to be hospitalized for treatment. While there he was diagnosed with A-Fib and told he recently had a minor heart attack. This was in addition to his existing COPD. I knew he could not be released to return back to their house and was beyond able to be “the primary caregiver” for mom.

I tried to arrange Home Care for them previously, but it was unreliable and problematic. There was a no-show, no follow up, and denial from both parents that they even needed help. I felt their situation exceeded what Home Care would effectively handle.

I had paperwork started for an ALF, and explained it as “respite care” for an undetermined amount of time. Parents reluctantly stopped arguing against it. They are settling in, but confused on why they are there and mostly not happy. I visited them and they seem bewildered. They do however look in better physical condition, are getting three healthy meals a day, and medications are managed but I know they do not see those advantages.

In addition to grief and guilt, there is an aspect of carrying the burden of making such a life altering choice for both parents. I removed them from their home never to return again. I am making them spend their life savings. I will soon be selling their house and belongings while they are both still living. How do you deal with all that?

Sometimes I wonder if the grief would be easier to handle if they had both passed away because I would know what to do with that. But this is something entirely different.

I also feel lingering resentment that dad did not see an inevitable collision course earlier, and by default left me to deal with it. I know I did not need to do any of this. I could have sat by silently and eventually a third party may have intervened instead. That did not seem right to me either. I feel like they left me with no good choice. Is this common?

Quilting brings calm

==They do however look in better physical condition, are getting three healthy meals a day, and medications are managed ==

That right there is what you need to remember. That is what you need to try to make happen for them- and YOU DID IT. The saying here is that you are doing it for them, not to them. Another saying is that they aren’t going to be happy no matter what you do, so you have to concentrate on keeping them safe. My parent’s PCP said that very thing to me when my step-dad told him they didn’t need to be in their AL.

As for their life savings - as a parent, I’m saving so that I can pay for my old age care and so that our remaining son doesn’t have to! I’m spending my parents savings on their care so that my money can be used for my care- again so that my son isn’t paying for me.

TrumpetSwan

https://alzconnected.org/discussion/comment/210377#Comment_210377

Thank you. I needed to hear those words today. Very clarifying. I recall thinking those same things last month as I moved them and believe it is what gave me the motivation to go through with it after a few years spent just mulling it over. It is just now hard to recall as the urgency of their condition has gotten more calm now. Thank you.

concerned_sister

Along with you are not doing it to them, you're doing it for them - it is the disease doing it to them.

fmb

Grief and guilt about placement are very common. Don't be too hard on yourself. You are a loving child and are doing what is in their best interest.

https://www.alz.org/media/greatermissouri/guilt_and_grief_when_moving_your_loved_one_to_a_care_facility.pdf

sandwichone123

When I placed my spouse I felt guilty almost every day, and every time I'd have to walk myself back through why I had decided to move him. Every time, it came back down to it's not me making the changes in his life, it's the disease and he would not be able to be at home in the way I had in mind.

Then the same process the next day. You know what's best for them; you do it, and they will get used to it and benefit from the predictable routines.

ButterflyWings

"In addition to grief and guilt, there is an aspect of carrying the burden of making such a life altering choice for both parents. I removed them from their home never to return again. I am making them spend their life savings. I will soon be selling their house and belongings while they are both still living. How do you deal with all that?"

@TrumpetSwan as the others have said in various ways, you did not make this life altering choice — did you give them Alzheimers? No. Dementia showed up and thank goodness they have such a responsible, informed, and strong daughter to do what is necessary to keep them safe. Thank goodness they have life savings to spend on their care. Thank goodness they did not die neglected, unsanitary, and alone in their house with clear evidence that they could have had a better, safer quality of life in a different care setting "if only"… If you are feeling guilty now just imagine what you would be feeling had that unthinkable reality unfolded while you ignored their situation. Bless you for caring enough to do what is needed, as hard as it is.

harshedbuzz

Grief is an appropriate response. It is perfectly human to feel sadness that circumstances prevented them from being able to care for themselves in their own home until the end. You aren't doing this to them, their health is.

It's also normal to feel regret at having to spend down their life's savings. This is especially true if they were prudent and didn't indulge themselves with fancy cars, jewelry and vacations and instead spend the savings that could have funded something they would have enjoyed or that would have made their lives easier on a place they didn't want to be. And yes, it is icky to sift through the things your LO held dear in life and decide what's worth selling or donating and what's trash.

Guilt, however, isn't appropriate or useful here. You are doing this for them, not to them. It sounds as if you chose a good facility and that they're doing better in their care. On top of this, you earned bonus points for attempting to meet their needs at home first. It's early days; they should continue to settle in. In your shoes, I wouldn't remark on the house sale, but would play this as though this is a temporary physician-ordered therapy/care situation.

Lingering resentment? Me, too. I don't know if it's normal or healthy, but it's real.

My parents moved away when my son was 6; they'd been exemplary grandparents (weekend sleepovers, trips to the Caribbean, new wardrobes for each season, attendance at all school things) to my sister's kids who even lived with them for a time after she died. As teens, the girls went through the typical teen drama and my folks cut and left— dad even said, "I need to get away from you people". I was pretty salty about this, and my DH was livid. I assured him that they would be back when their asses needed wiping and that's pretty much exactly what transpired.

Dementia meant I had to make all the decisions they should have. It meant I sold both their houses and shipped cars and found a new place for them to live and then another new place when they were unhappy in the first place. Getting them set up here was like a full-time job for at least 18 months. I thought I might get some life back in stage 8, but mom is socially very passive and relies heavily on me for running her life and providing companionship. And now she's showing signs of a cognitive shift and I fear I'll be doing this all again.

HB

TrumpetSwan

https://alzconnected.org/discussion/comment/210420#Comment_210420

Thank you. Yes, I am also walking myself through the reasons why I placed them every day. I will feel OK about it for a while, but then go back to second-guessing and needing reassurance I did the best thing. Especially I will question myself when I visit them, and they look better than before and I start thinking they are not that bad. Ugh.

TrumpetSwan

Thank you, HB. Saying the grief is appropriate and the guilt is not useful is good to focus on. I could get lost in the guilt and start back-peddling, but I believe whatever we do out of guilt leads us down a bad road. Getting them set up though is like a full time job we never applied for. Thank you also for sharing your own experience and it helps to know I am not on this road alone.

TrumpetSwan

Thank you, Butterfly. Thank you for saying they have a daughter who cares enough to do what is needed. I feel like it was the more difficult road though at least right now. It would have been easier to ignore it, and let the chips fall where they may and not take responsibility for any of it. However, ignoring it seemed "something" would have happened - a car accident, injury or worse, untreated disease, etc. The guilt of that would have been worse. Thanks.

forbarbara

Guilt, remorse, sleepless nights, tears are all part of the package. I think what happens when we finally get LO settled and safe in MC or ALF is that we stop dealing with everything at a crisis level - which gives us time to experience all the emotions that were set aside during the crisis. The “shoulda coulda woulda” is exhausting.
You have just completed an amazingly difficult task with no one to acknowledge that - but all of us in this forum know you’re awesome.

TrumpetSwan

https://alzconnected.org/discussion/comment/210582#Comment_210582

Forbarbara — Thank you!!! Acknowledging it is part of the package is good because I thought it was just me. I think you are right that we are not on "crisis alert", so are now have some calmness to see the new reality. YES - it was "an amazingly difficult task" and also YES "nobody acknowledged it". It changed my life. It has changed me. I did not expect that. It is profound. Right now I cannot see anything good about it. (Except of course being able to share with others here.) Thank you.