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LindainCT Posted June 2018

I'm having a hard time dealing with my father's dementia and being in a nursing home.

Hi. I'm new here. I've been lurking on this website for months and finally joined. My dad is 92. We never thought we would have to put him into a nursing home. He's always been a strong proud guy. Over the last few years... 10?.... he's gotten meaner and more confused and finally after threatening to kill himself and my mother for the 100th time, we had him brought the ER. They kept him for evaluation and they had us take him to be evaluated at a center and the answer was dementia. They never told us what stage but he only got 3 question right the first time and nothing right the second time. He went there In Jan 2017 and June 2017. He stayed home for about 9 months, but it became too much for my mother. He was combative and threatening her more and more (and me and my sisters when we'd visit). He's smashed tables and dishes, thrown objects across the rooms, threatened to burn down the house. And of course at night it was worse. He was downright scary! Even on his meds. He began falling and we had to call 911 almost weekly. Finally, after one ER visit, they told us he needed to go into a nursing home. (My mother's house isn't set up good for a wheelchair and at 85, she just can't do it.) It was the hardest thing we ever had to do. He's been there for 3 months and I'm still sick every time I leave. I try to go everyday on my lunch hour. My mother and sisters go a few times a week at different times. He gets at least one visitor a day. The nurses there say he gets the most visits out of anyone else! He's getting good care there. The aides are really good... but the thought of him being there... I can't get over the guilt. He made me promise to never put him in a nursing home. But like I said... it got to the point that my mother was killing herself taking care of him. I really thought he would kill her either mentally or physically. (She was failing... she looked like death) Now I see him in a wheelchair (he can no longer walk) and in a diaper. He is starting to choke on his food and can barely eat by himself so now he is being fed most of the time. (He tries to get some food on the spoon but can't seem to get it into his mouth) He usually knows who we are and he is happy to see us. I sometimes wish he were "further" into this disease so that he wouldn't know where he is. He says things like "Why am I here... what did I do in my life to end up here". Then there are days he doesn't talk at all. Some days when I visit him, he is barely there... talking about God and dying and seeing his dead relatives... and I think 'this is it" and then the next day he is more with it and you can almost have a conversation with him. It's like an emotional rollercoaster. Not to mention the stress of the Title 19 (we are Title 19 pending) & the fact that he was just put in a physc ward for 2 weeks at another hospital for being combative with the staff. But he is back at his nursing home and seems better now on his new meds. I'm sorry to babble on about different things. I just need to vent. I'm my dad's POA and I'm really close to him. The guilt I feel is awful. I even had to go see my doctor to give me something to calm me down because I can't sleep or concentrate. All I think about is getting the Title 19 approved and about him and my mother and how will she afford and maintain the house.... I always thought my dad would just live out his life in his own house. I never thought it would come to this. He's 92... he's not in bad health otherwise (heart/BP) but like now he is choking on his food and sleeps more. He looks really good for his age too... people can't believe he is 92. I just feel awful knowing he is sitting in the nursing home right now just doing nothing. He doesn't understand any of the activities... bingo, art... He was so active at home. Always in his garden or in the garage. This is just a horrible disease... and it can go on for years!!! I can't believe this is my life now. Which is why I'm so happy to have found all of you who are on this journey too. Thank you for letting me vent. I'm sure I'll be posting more questions.

LindainCT Jun 2018
Thank you all for your replies! It's great to know there's a support group out there for all of us going through this!

BarbBrooklyn Jun 2018
Have you ever read the book On Being Mortal by Atul Gawande? It's a book about end of life decisions we make (or don't make) for ourselves and the agony our loved ones go through trying to make them for us.

It would be an interesting and provocative book for you to read.

Does your mom's health and safety matter less than your dad's?

Is dad happy when he's in a rage, agitated, violent? Was he that way when he was younger? Would he be appalled at the way he is when not on meds?

I think a lot of people promise their parents "I'll never put you in a home" when their parents are middle aged or just a bit older and still very much themselves. What sane and caring parent wants their child to sacrifice their own family, their retirement security and the opportunity to raise their own children in a secure environment?

Dad needs three shifts of rested caregivers, not an elderly spouse who has to dodge thrown crockery.

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Lostinthemix Jun 2018
You are never alone, caring and very knowledgeable people are on this site!

I am sorry you are going through this. It's an awful thing!

JoAnn29 Jun 2018
I agree, cut down the visits. Alternate if you want so he has a visitor a day. Lunchtime is your downtime from work. You need that for your health. See Dad at another time when you can relax. Feel you are lucky you found a place that takes good care of Dad. Leave that guilt behind. I don't think our parents felt they would live past their 80s. Because they have, we children are also Seniors. We can't promise anything because...life gets in the way. I have a feeling Dad is further into his Dementia/ALZ, by his previous outbursts, than you think. Dementia is exactly how you say Dad is. Being alert one day, not the next. Your Dad going to a Psychiatric Hospital was the best think for him. He was violent and needed to have close supervision until they were sure of the dose of medication was right for him. Enjoy time with Dad. Just think what Mom was going thru. Dementia patients can have strength you can't believe. Your Dad is in the best place he can be.

Mincemeat Jun 2018
You are not alone. I have been through a bit of this. Here are a few thoughts:
1. Throw the guilt out the window. Stop it, now! You are saving your mother and providing professional care for your father. (Do you really think she should be tranferring him out of the chair, bathing and changing him as well as being verbally abused? NO!)

2. If he has dementia...the person he has become is not really him. Dementia people often become angry, negative, and unreasonable.

3. It really takes more than 3 months to settle in. Old folks do not like change. He will get used to it. We do not like change. Seeing your parents apart hurts the child inside you.

4. As POA it is your responsibility to find solutions. Sounds like you have. Repeat reading the above. Go for a walk, breathe deep. Guilt will eat you up. Let it go!! You have to take care of yourself as well.

Sermon over, bless you, you are doing a great job!

Ahmijoy Jun 2018
Welcome to our site, Linda. Come back often. To a fault, those of us who have had to put a loved one in a facility have suffered from guilt and sadness if not outright depression. And they don’t make it any easier when they ask us why we did this to them. My mom often told me, “I hope your kids never do this to you!” On the contrary, Mom. I hope they DO if the time comes that I, like you did, become delusional and paranoid.

In my humble opinion, you are visiting too often. It’s like picking at a scab. You say he is receiving good care, so you don’t really need to be there every day. Trust the staff to call you or Mom if the need arises. Honestly, the more I visited Mom, the harder she was on me. When I cut my visits down to 2 or 3 times a week, I stopped crying all the way home.

Don’t torture yourself with these thoughts, but remember how Dad acted when he was at home. You were seriously lucky that he didn’t injure your mother or anyone else during his out-of-control rages. You did the right thing by sending him to a facility. Really, you did. Now cut down on your visits, research this site to find out how to overcome your guilt, hug your mother and come back here often to tell us how you’re doing.

cdnreader Jun 2018
Dear Linda,

What a loving and caring daughter you are. I know are doing the best you can for your dad and its very hard to see him in this situation. I'm with you and never wanted to put my father into a nursing home but sometimes things are out of our control.

I feel for your dad and wonder if he is suffering from the side effects of medication and the progression of his disease. Are the doctors able to try something different?

Please know we are here with you. Thinking of you. Sending you hugs.

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