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 Dealing with the guilt 
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Joined: Tue Jun 07, 2011 3:14 pm
Posts: 36
Post Dealing with the guilt
This past Saturday I placed my parents in Assisted Living at the urging of their neurologist and Internal Medicine doctor. Mom has LBD and dad is in the early severe stage of AD. They actually went willingly. I'm not even sure why. Dad did not really want to go, but Mom for some reason thought it would be great. The first day mom wanted to come home and it has continued. I feel so guilty. I had planned to allow them to continue living with me and bring in help. Both refused. They had an apartment added onto our house. It really was the perfect set up, but having someone come into their house everyday was a constant battle. She fired both the maid and the caregiver and only kept the one lady coming in for 4 hours on Friday to drive them places. Even with the LB stoop, awful tremor and terrible balance, she was convinced she could continue to cook and wash her own clothes....even though the occupational therapist said she should not. My stomach is in knots just thinking about how hard she fought me over cooking. I gave up and let her cook....always panicked that she would burn herself. She did, but that did not stop her.

The reason both doctors were suggesting AL was because of mom's judgment. She let a total stranger into our house who walked in my kitchen. I almost threw hot grease all over the poor insurance salesman. Mom is convinced that I overreacted and that the stranger is a member of our church. They have not been eating right and she insists on not eating the food that I prepare. She told a total stranger that she had left her purse in the bathroom and sent the stranger to find it while I was registering her at the doctor's office. I managed to outrun this total stranger and retrieve her purse. The stranger never returned. It could have been much worse. I just cannot control her. She gets dad so upset that I am actually frightened when he has his anger outbursts.

The final issue was that a year ago I let them go to the dentist with their caregiver. Mom apparently refused to allow the caregiver into the exam room with dad. Mom told me that he had a couple of small cavities, but that it was nothing to worry about. When dad's partial got stuck in his teeth last Tuesday, I took him in to have it removed. It was then I discovered that the poor guy has a mouth full of rotten teeth and that mom had not reported things accurately. (I had no idea she had LBD a year ago, although I knew something was wrong).

Watching dad cry every time I go to visit is killing me and mom is making it worse by making up things about the staff. (Not giving the medicine - they had, it had been signed off on, only cold water in the shower, etc). Dad is getting more miserable by the day. Mom is becoming argumentative and combative with me. My dilemma is that Medicaid will kick in to pay for mom on March 1st. She will lose dad's insurance. Here in NC she is getting Medicaid for special assistance in the Assisted Living. She could not have it if she remained at home. As of March 1st, they will have to stay whether they want to or not. They are actually in the General Population portion. If mom were not with dad, he would be in the memory unit.

I am trying to decide what to do. They have been married for 63 years and are sharing a home at this beautiful Assisted Living. I really think I should leave them in Assisted Living no matter how upset she gets. She can no longer care for dad and refuses help. I guess I have made my decision, but it is really killing me inside.

What would you do? I would appreciate any tips and advice you can offer me. They are both 87 and I have no siblings to help me.

Mom 87 in AL with LBD diagnosed one year ago, Dad 87 in AL with AD diagnosed 6 years ago

Mon Feb 20, 2012 5:14 pm

Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: Dealing with the guilt
When we are no longer able to manage the situation ... Letting Go is a gift of love to our loved-ones. Letting go of our guilt is a gift to ourselves...

My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?

Mon Feb 20, 2012 5:50 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dealing with the guilt
Yes, I think you made the right decision to place both of your parents. It was simply unsafe for them to continue as they were.

Does the care facility have a social worker that you can get support from?

I think eventually you will come to terms with your guilt, but it will take time and you'll have to see some positive things.

Mon Feb 20, 2012 6:28 pm

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Dealing with the guilt
I know exactly how you feel. 6 months on and Dad still cries and begs me to take him home. I am not as torn apart as I used to be - I keep reminding myself it is for HIS best interest, comfort and care. He doesn't realise this and thinks he would be happy if he went home. I KNOW he would be absolutely miserable there - he wouldn't have 24 hour care there, and would not have the comfort he has now. I know it is extremely difficult, but try to look at the positives - that they are together and are better cared for by professionals. You now get to spend quality time with them instead of worrying about the day to day care of them. There was a post here on the forum that gave me the ability to look at the situation differently and cope better. I'm afraid I cant remember who said it - I think it was Jeanne, but they described the idea that going home was more a wish to get back to their healthy selves than to go to a certain place. This led me to think about it and I realised that Dad will never be 'happy' again - he is comfortable, and there are days when he can go for a little while without looking to go home, but I really believe that even if I took him home, he would not be happy - in fact I now believe he would be more miserable than he is now. Every situaton is different - except for one major thing, and that is we are doing what is right for them, not necessarily what they want, but what they need. Look after yourself and try not to feel guilty. They refused to stay with you for a reason - they realised on some level that you would not be able to cope. As I said, keep trying to look at the positives - very difficult, but it does help.
Take care of you,
Ger xx

cared for Dad who passed away on January 28th 2013 R.I.P.

Mon Feb 20, 2012 7:16 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Dealing with the guilt
You've been given lots of words of wisdom here from people who have been right where you are. The guilt will lessen after a while. As they become more ill and more unable to do things it will be more and more obvious that you made the only viable choice for all concerned. And your mental and physical health are just as important as theirs. If your parents were operating at their full, healthy mental capacity, they would tell you you've done the right thing, I'll bet.
Many of us have been through the angst and guilt about placing our loved ones, but it does get better. Good luck to you - it is hard with one parent ill, but two must be just excruciating at times. Big hug, Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Tue Feb 21, 2012 6:39 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: Dealing with the guilt
I recently found this poem by an unknown author in Jolene Brackey's lovely book, [i]Creating Moments of Joy. It describes the healthy choice of letting go for the right reasons. Perhaps it will include some thoughts that might help you.
It is called "Let Go."

To let go does not mean to stop caring;
It means I can't do it for someone else.
To let go is not to cut myself off;
It's the realization that I can't control another.
To let go is to admit powerlessness,
Which means the outcome is not in my hands.
To let go is not to try to change or blame another;
It's to make the most of myself.
To let go is not to "care for," but to "care about."
To let go is not to judge,
But to allow another to be a human being.
To let go is not to deny, but to accept.
To let go is not to nag, scold, or argue,
But instead to search out my own shortcomings and correct them.
To let go is not to regret the past,
but to grow and live for the future.
To let go is to fear less and love more.

What you are doing is hard, but it is being done in love and for the right reasons.
Praying for you,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Sat Feb 25, 2012 6:28 pm
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