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Both parents in MC - Dad worse than mom -Guilt overload
Posted: Thursday, September 12, 2019 11:39 AM
Joined: 9/12/2019
Posts: 1

Hi all, 

I'll try to be brief.  My father has been showing signs of Dementia for the past year and my mother started to show signs shortly thereafter.   Long story short - they were BOTH placed in MC.  2 months later, I got them both to AL, and that was mostly due to the fact that my mother is much more higher functioning than my father. 

My biggest problem now is the fact that my father ALWAYS wants to go home.  He says about 5+ times a day "why can't I go home" "when will I go home"...yet he doesn't even know where home is.  

My mother is so much happier now in AL as they have a 2 bedroom unit - so this gives her some "space" from my father who is just on her nerves every second (they've been married for 70 years).  She also wants to "go home", but she doesn't ask about it that often and knows that they are now closer to where I live (they used to live 6 hours away, now they are 20 minutes).  

GUILT overload every single time I go to visit because I feel badly that my father just doesn't understand that I'm doing this to make sure he's safe.  GUILT overload because I keep questioning if I am doing the right thing with regard to my mother (who has fallen when she lived at home and nobody there to help).   I just can't get rid of the guilt.   And the heartbreak about seeing how they are both going downhill...with my father faster than my mother. 

I can't find any local support groups, so I'm trying here for any advice. 

Thank you and bless you for reading this and for any help. 


Posted: Thursday, September 12, 2019 12:44 PM
Joined: 9/5/2019
Posts: 42

Welcome to this Group... I think you will find ALOT of support here...

As for the guilt... I know EXACTLY how you feel. I feel it every second of every day in regards to caring for my Mother. She is not in MC yet but on the waiting list. Honestly, she should have gone into MC a long time ago, but guilt kept me from sending her there. Granted, she has no assests, so I also have to worry about payment and insurance, etc. 

And, even tho she is at home right now, she "wants to go home".. so that is so very common...

But, back to the main issue, guilt. I feel it for every decision I make for my Mother. But You and I both have to realize that the decisions we make are made with love and the very best intentions in regards to caring for our LOs.... Not so easy to come to that realization some times, that much I know. 

I am in the beginnings of looking for a Counselor to talk to about this. This may help you as well...

God Bless.. you are doing what YOU know is right....

Posted: Thursday, September 12, 2019 1:11 PM
Joined: 10/24/2018
Posts: 966

Guilty as charged on GUILT GUILT GUILT, and deservedly so sometimes as when I don't go visit Mom in MC as I'd thought to do. Like today....

How many ADLs does your dad do? Is he a good fit for AL? Can your mom keep up with him, all the prompting for everything? Or is he very independent and just really wants to "go home". How long have they been in this AL. It sounds like your mother deserves that break! 70 years! They must have been teenagers when they married. What a life you've witnessed.

Is it possible to find a facility within the budget that has separate sections for AL and MC, and your mom can be in AL while your dad moves to MC when she just can't handle it any more? My mother's original AL was giving her lots of help that wasn't strictly in her care plan by the time she left to come to my city. I'm not sure a for-profit AL would have done that. Now that she's in MC, all that help and more is standard.

Posted: Thursday, September 12, 2019 1:25 PM
Joined: 9/5/2019
Posts: 42

I wanted to touch base on watching parents "going downhill"...

With this insidious disease... it's like watching them die  alittle at a time. My mother is no longer the woman who raised me, and it hurts everytime I think about that..

It is so hard... so heartbreaking... We understand.... 

Posted: Thursday, September 12, 2019 2:25 PM
Joined: 7/17/2017
Posts: 403

Welcome, and I'm so sorry you need to be with us in this group.  I was on the long guilt train for quite a while, but I also found ways to feel more grateful than guilty if that makes any sense.  I was grateful that my Mother had the funds to support her living in Memory Care for almost three years (and assisted living before she Really Needed memory care).  I was grateful for the staff that did their best to take care of her difficult personality, and my tears and difficult personality!  I was grateful that I was "with it" enough to have her placed instead of looking the other way. I'm grateful for my support system, this website, and casual friends.  

 She passed about a year ago in her sleep, and there are little things that my mind tries to feel guilty about now and then, but overall I'm giving myself the thumbs up for the whole situation, and you should too.  It sounds like you chose a nice comfortable place for them, and that you did the right thing by deciding to have them placed.  When your Dad asks, I would tell him, "Soon, Dad.  You Are Going Home Soon, and I am very sure of that".  " We just need to get things settled here first".   He wants general reassurance that everything is okay; and he will be going to a better place soon; we don't know when or exactly what it will look like, but it's okay to tell "fiblets" to ease and settle his restless, anxious mind.  

Posted: Thursday, September 12, 2019 2:54 PM
Joined: 9/4/2017
Posts: 18

I am so sorry that your parents are not content. 

 First of all, please be aware that they likely wouldn't be content anywhere. When my mother developed dementia she lived first with my brother, then with my sister and now in AL.  Although she is super-cooperative and tries her best,  she hasn't been happy anywhere.  This is mainly because her brain and body aren't working well.  There is definitely a grass is greener thing going on.

Second, I try to re-frame my feelings to think "I feel sad my mother is unhappy" rather than "I feel guilty that my mother is unhappy".  Somehow that is more accurate and helps me deal with the feelings better.

Finally, I HIGHLY recommend therapy.  I started seeing a therapist when things started going downhill for my Mom.  She lived in a MIL apartment next to me at the time.  I knew, given that I have health problems of my own, that I couldn't be a caretaker for her.  There was guilt involved.  Talking things out with a therapist was so very helpful.  Everybody else I could talk to had some skin in the game (siblings, spouse, friends, children).  A good therapist can give you an independent opinion and point of view, and can help guide you to more productive ways of thinking.   

Best wishes!!






Posted: Thursday, September 12, 2019 4:19 PM
Joined: 9/12/2019
Posts: 9

Welcome to the gang.. I Joined today too looking for support, and I'm glad that I did. My friends and loved ones as much as they try, dont really seem to understand the realities and emotional tolls that caregiving can take. Most think that my stress has been reduced due to MC placement, but it also means theres more I have to take care of, as my loved one now can't.
My LO is 8 months into a MC facility, but the familiar feelings you described of guilt, questioning, wishing you could do more, and missing the version of your loved one before dementia set in is so familiar and common to me too.  I try to use music and redirection when my LO wants "to go home" or describes her room in less desirable terms.  I'll go heavy on the compliments "I love what you've done with the place!" and "I think you're an incredible interior decorator" go a long way.  

There are still tough days and weeks where I cannot get myself there enough!  I'm taking the advice that another poster offered and joining a support group (local resources tab on the right hand of the screen) , and also pursuing a counselor.   Good luck to you- and please reach out whenever. 

King Boo
Posted: Thursday, September 12, 2019 4:41 PM
Joined: 1/9/2012
Posts: 3224

Another possible alternative is to find a community/facility that offers 3 levels of care - Assisted Living (preferably with varying levels), Memory Care and skilled nursing.

What would this do?

Let your somewhat higher functioning Mom live in AL, while Dad lives in MC - or, lives in the apartment with her during the evening and night but goes to the MC wing during the day, thus not driving your Mother crazy as you describe.  

Having skilled nursing also let's them progress or get rehab as needed throughout the coming decline - all on one campus.  It's also a wise use of their financial resources, many communities have a benevolance policy for people who have spent their life savings at one community and will accept Medicaid upon spend down.   Show up at a new nursing home penniless and on Medicaid - not impossible, but far less choice.

It worries me when you say "got them to AL" like it was a goal -  not always the best thing for someone as far along as your Dad.   You have to place for their worst day, not their best, and add a buffer for at least a year of decline.  I will also note that the average stay in AL is about 2 years even when people are clearly eligible - and I suspect both parents may be hanging by their fingertips if they are both asking to go home.   Plan accordingly.

As to guilt - separate out the source of your feelings..  We all wish things could be different, but we did not cause change, even as their decision maker - the disease did.  Their care needs must drive the decision making.  We have to mourn and feel sad, but recognize that it is not our fault they have these care needs.  A reality check is hard to do though, when we are upset.  We do the best we can.