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timmyk48 Asked May 2011

My father's adjustment to his new dementia home isn't working. How can we make this easier for us?

10 days ago I had to put Dad into a dementia home. He hates it and keeps telling me to "get me out of here!!!!" Tells me I don't know what I'm doing and that I am loosing my father and will never see him again. His dementia is big....needs help with everything...can't even walk good with walker anymore. He absolutely needs to be there, but it breaks my heart to give him up. I visit every day. For 2+ yrs I have been living with both parents in their condo caring for them alone.
I love him soooo much and making him happy makes me happy.
When his face would lite up with happiness about something.....my throat tightens and eyes tear. Now I can't make him happy anymore and it hurts so much. This dementia is stealing him away from me slowly/quickly and now with him in the facility I am loosing him in another way. He has frontal lobe dementia.

The facility really is nice...has his own room + bathroom that I am in process of decorating and bringing familiar items from home. The food doesn't look that good, at least not like at home.

They are telling me that he will adjust...not to worry...this is normal.

Could anyone confirm that and offer some suggestions to make this easier for us?

JoyceW May 2011
Thanks Jeanne, you made me both laugh and cry!

jeannegibbs May 2011
JRW, do get that counselling. You are experiencing a great loss, and worry, and probably unrealistic guilt. All of this is normal. You are not crazy. You don't need to get "fixed." But just as you want all the help you can arrange for your mother, you deserve some help with your overwhelming feelings, too. This long goodbye -- this loss and grieving before the actual death -- is very hard to cope with. There is no formal ceremony, like a memorial service, to provide closure -- that is far in the future, and friends don't rally around with cards and hot dishes. It is lonely. See a counselor.

I hope that if I ever have to be in a nursing home I will have the grace to make the best of it and get on with what is left of my life. I know, though, if I have dementia I won't have much control over that. I have, by the way, promised all 5 of our kids that if I ever wind up in a facility where I have to listen to other people's televisions all day I will find a way to come back from the dead and haunt each and every one of them!)

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JoyceW May 2011
I can certainly relate. My Mom has been in a nursing home for 9 months and I see no improvement in her attitude. She hates it now just as much if not more than she did when she was admitted. I am an only child, and a long distance caregiver. She has had a couple of brain bleeds. She can still physically get around OK but needs some assistance. The dementia is pretty bad. I believe everyone is different and adjusts, or not, at his or her own pace. I don't think my Mom will ever like where she is because it is not the HOME she remembers. I too only want to give her everything she wants and tried to do that before resorting to the NH. Left her home alone with a doctor's assurance that she would be OK (she wouldn't accept any outside help). It didn't work out well.

I am seriously thinking of going to counceling myself as I become quite depressed after just speaking with Mom on the phone, which I do at least once a week. We were always very close and watching this disease rob her of the life she had is heartbreaking. My husband and I spent a couple of weeks visiting in April. (we live 3000 miles away). She remembers we were there. Our conversations are pretty one sided. Whenever I try to change the subject, it always comes back to "get me the "heck" out of here" and/or I wish I were dead. I wish you much luck with your Dad. I have spoken to eveyone available to me and have hired an angel of an elder care nurse to assist me looking out for Mom. Nothing helps 100%. Mom is 90 and I have been blessed to have her this long and I miss her. I agree with what cmagnum has to say...good advice.

ChristinaW May 2011
Thank you, again, Jeanne. Yes, I spend a lot of time communicating with the caregivers, and showing them my appreciation for what they are doing. I am in awe of people who do the job of caregiving for a living, or do it 24/7 out of love. Must be a Mother Teresa thing. I took my Mother out of the first care home a year ago because the live in head caregiver was not patient and was over medicating my Mother, letting her fall and not tending to her at night. I made the best decision I could for my Mother at the time and cared for her myself, taking her off unnecessary meds, with the help of a good geriatric psychiatrist.
Now, I have had to make another decision for my husband and me, and my Mother. So far, so good.

jeannegibbs May 2011
What a good way to put it, Christina. Your mother is getting a "better you" and that is worth a lot. We are not talking about dumping a loved one in a nursing home and turning our backs on them. Many caregivers, especially when dementia is a factor, find that advocating for a loved one in a care facility is not less work than having them at home -- just a different kind of work and stress.

Giving up the 24/7 responsibility can free you to do better what only you can do -- be the best daughter or son you can be.

ChristinaW May 2011
Maybe I should not have said, "he will adjust". I think we know our parents base personalities, and how dementia has altered their behaviors. Thanks, jeannegibbs, for pointing out something which now expands my perspective:)
timmy: you know how your Dad used to respond to changes, and perhaps you can use that as a clue to help in the transition.
I am reminded that acting out behaviors of most types are fear-based, and with reassurance and consistency, we can ease them through it.
and timmy--I'm with you about the food. I have offered to bring something once a week and provide the recipe, if all enjoy it. Next week I'm making meatloaf, which has lots of vegies in it, as well as turkey, or beef, and pork sausage. The owner goes to Costco and buys lots of frozen entrees, which is 'easier' for the caregivers to prepare. I know Mother is not getting my cooking every day, but she is getting a 'better' me, as I am rested and more attentive to her. Can't have everything.

jeannegibbs May 2011
Christina28 says he will adjust and look forward to your visits. He probably will. There is also the possibility that his discontent will linger on. Either way, you did what had to be done and the task now is to make this placement work, not to second-guess the decision. Early in the disease my husband (LBD) kept begging to go home. Nothing I could think of would comfort him. Over and over, for months, he wanted to go home. He called the sherriff's office claiming to be held captive against his will. He was miserable. I was beside myself. The kicker? He was home. We were both in the home we had lived in together for the past 12 years, filled with family pictures and furnishings we had lived with for nearly 30 years. I realized then that his happiness was beyond my control (not that I don't still try to contribute to it) and that if I ever did need outside placement for him I would need to remember these months of wanting to go home when he was home. The discontent is far beyond the particular surroundings.

Yes, you are losing your Dad. Dementia is a dreadful thief of personality before it is a thief of life. Having him in a home may help you hang on to his essence better than you could at home. When you have 24/7 responsibility for someone you can get so tired from the physical maintenance tasks that you don't have proper energy for just being there for him and giving him emotional support. Now that you don't have to feed him and toilet him and dispense his meds and clean his messes, etc. etc. you can focus on quality time with him. I hope this will bring you both some comfort, in time.

ChristinaW May 2011
Hi timmy,
I moved my Mother into a residential care home last weekend from my home where 2 caregivers and I took care of her for almost a year. Our home was not set up for my husband and I to continue our own life of privacy, away from the constant demands and focus of Mother. We both work and need to be able to relax at the end of the day, and I did not get much sleep the entire time she was here.
My Mother has Lewy Body Dementia, is 94 yrs old, and legally blind. The new home is nurturing and has 4 other alert women and 2 men. She is adjusting well and is happy to see me every day, no complaints. I believe, as does the owner of the home, that Mother's advancing dementia is preventing her from realizing the change. Her main issue is not wanting to ever be alone; with all the other people and activities, it take the pressure off of one person needing to sit with her and hold her hand, and Mother can interact with the others, or just "feel" the company.
You must have very good reason for putting your Dad in the home and do not need a guilt trip as to why you did it. As with all major changes we make in life, first we consider the options, weigh each many times, make a decision, then wonder if it was the right one. You are one person, you have your own life, too.
This week has been very emotional for me, as I do not want to hurt my Mother, so I understand what you are going through. We first have to make sure we can handle our duties, and that means not overburdening yourself with too many responsibilities, or you will not do any of them well. You are entitled to a life, you know. He will adjust and look forward to your visits. Breathe. It will be OK.

timmyk48 May 2011
Never met a social worker there.
Not doing anything with their home....Mom and I live in it.
Just bringing some photos to rehang in his room, his hamper, towels, toiletries, clothes, etc.
Getting a new bedspread and curtains made, got him a chair lift recliner.

notrydoyoda May 2011
Good. There should be a social worker there and you should have met them the very first day, plus they should have helped you with all of the paper work for getting your dad moved in there. BTW, what are you currently doing with your home? Are you renting it or trying to sell it? I'm afraid if you make it look to much like home, he might want to go home even worse. I'm not sure, but that is an idea.

timmyk48 May 2011
thank you for reply.
I do have happy times...I was just referring to how much it means to me to make him happy and now there aren't any of those moments. You are right about daily visits...but need to keep filling in the forms with them and bringing him things from home. This move happened very quickly without warning and we all have been scrambling to make it go as smooth as possible. Mom and I went back to my home in a different state for 4 days to take care of some of my business there and he was alone then. Will see if there is a social worker there.

notrydoyoda May 2011
10 days is not very long to adjust somewhere. You been visiting everyday? That is probably making the transition even harder. My mother has dementia and is a nursing home and I don't nor can I visit her everyday. It took her some time to adjust. Only lately has she started thinking she had not been there as long as she had plus would get the idea that she was healthy enough to go home which she is not. Along with dementia, she is not mobile at all after her broken hip and refusal to work with physical therapy. I gather that his dementia has worsened to the point that is the best place for him to be since you have been doing primary care 24/7 for more than two years. It is unrealistic to expect oneself to be able to do 24/7 very long anyhow. What does his doctor say about where he is now? I would tend to go with the opinion of an objective third party anyhow. Does the facility have a social worker that you can talk with? I've learned in almost 3 years that not all social workers are created equal in ability or willingness to work with people. Your dad is going to have to make peace with his own emotions which is something you can't do for him although I hear you wanting to. Likewise, you will need to find ways to be happy without it depending on him being happy. While I'm not a therapist, I would encourage you to see a trained therapist to help you sort out your emotions and work through them. I wish you well.

sskape2 May 2011
If there is any way you can afford in home help I think both you and your Dad will be so much happier.

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