Feeling Guilty/Stressed

aback78

Hi Everyone - first time here. My father had a stroke last March and was diagnosed with Alzheimer's/Dementia....he is around Stage 4-5. I am an only child and we had to move him in with my family....Husband and 2 kids (13 and 11). It's been a little over a year and it's really taking a toll on me. My job is being really awesome and allowing me to work from home. He does attend an adult day care 2 times a week (which he hates). He has told me and everyone that if I put him in a home he will haunt me. I don't know what to do. My kids play all kinds of sports and he can't attend them all - it's just way too much for him to go. He doesn't understand that when I am home working - I am working and he has to leave me alone. I get angry with him and I hate that. He refuses to brush his teeth, taking his meds are a chore....I know his life has been turned upside down and I know he misses his car and house. Has anyone dealt with anything like this or does anyone have any suggestions? I don't want to put him anywhere because he is my best friend and I do love him but I am afraid that this is affecting me and my family in more ways than one. Thanks for listening! :(

SusanB-dil

Hi aback78 - welcome to 'here', but sorry for the reason.

All of what you are describing is normal. Yes, his life is turned upside-down, but so is yours. One of my co-workers was in the same position, working part-time at home, and in-office the other times, and with teens. The times she was in-office, her mom went to a day-center. But she just couldn't do both. It worked for a little while, but did finally end up placing her mom, and it really did work out best for all.

You cannot take it at face value when he says he will not go to a 'home'. At some point, he may have to, and it won't be on you, it will be 'this' disease. He may have to, and it will be to keep him safe, with 24/7 supervision, and for you to get your life back. You'd still be his advocate and best friend.

Rule #1 - don't argue with a PWD. Rule #1 - MUST take care of yourself. Rule #2 - read rule #1, both of them!

aback78

https://alzconnected.org/discussion/comment/221055#Comment_221055

Hi SusanB-dil - thank you. You made me cry - not like that is hard these days. I appreciate your response. His palliative care nurse is very helpful and is telling me I have to take care of myself as well. That is hard - I feel like he is my priority. I don't want to disappoint him ya know and it will break his heart if he leaves me. When I do leave the house he wants to come with me or when I am gone he is pacing looking for me. I am afraid if I put him somewhere he will decline much faster.

Lucy C

https://alzconnected.org/discussion/comment/221076#Comment_221076

Looks like this thread got double-posted. Yes, this is the really hard part. Part of the behaviors that you are seeing—him looking for you, wanting to be with you, etc., have to do with "scaffolding." He is building a sort of dependence around you as a support structure, which is absolutely classic with this disease. What happens if you place him is that you take away your presence as an immediate "support beam," but replace it with a much stronger network of "supports" that a good memory care facility will provide. In other words, you are a beam that can't hold up forever, but you can give him an entire framework that will be more durable in terms of what it can stand.

He will probably have some negative emotional responses initially. Just know that the disease will eventually wipe these from his memory, just as it was responsible for their initial formation and presence.

Hugs!!!

mabelgirl

just want to echo the fact that you and your family are as important as your dad. I had to face moving my mom to an ALF after a year in my home; had actually decided months before but took awhile to get Medicaid. I tried day center and a companion for her as well. She didn’t like either. She’s always told us not to put her in an “old folks” home. When I discussed with my siblings several of us got emotional with that memory. However, we all agreed whatever the arrangement it has to be what’s best for the family not just one of us. So mom has moved to an ALF and boy what a change! She is content and likes her apartment! Yes I had to deal with the feeling of guilt and failure but seeing her lately I’m so pleasantly surprised. You can read some of my other posts my mom was not content prior to the move. I read somewhere that the PWD senses our stresses and I wonder if that helped with the change, not living in a home where stress (mine) was around.

Prayers for strength and wisdom.

psg712

The decision and the preparation for a move to a facility are usually much worse than the PWD's actual experience of living there, once they get through the initial adjustment.

Anonymousjpl123

I second @psg712, and also will share that i totally understand the struggle. I struggle with guilt for placing my mom all the time, even though she absolutely had the choice to stay in her home with full-time care! Sadly, your LO has lost the ability to think logically. From what I have learned on this board and the few in person support groups I attended, it is really not “better” either way: the disease seems to win whether they stay home or are in placement.

So with all judgements aside, I would look into a few places and maybe have a visit. Also check out adult day care centers. You might be pleasantly surprised. You are not alone, and you don’t need to choose between the PWD and your family. You will find ways that work - but i will say we usually need more support than we think we should. Keep us posted.