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My sister and I looked around for a long time to place my dad in a good facility. She works full time and I am not in a position to take care of him but have given her 100% support by doing external duties for him.
He was diagnosed with early dementia, but unfortunately it has progressed and he suffers a prostrate problem causing him to soil his pants from time to time, which my sister found extremely hard to cope with, even with her daily help.

He was placed in the facility two weeks ago and at first threw a tantrum when he first saw us. Now after the Respidal he is on, he is a lot more subdued, but he cried yesterday when he saw her whilst I remained in the garden area for fear of him really performing if he sees me. He is very heartsore that we did this to him and we feel so very bad and at a loss. We are thinking of ways we could take him back, but haven't yet found a solution to have him taken care of full time at home. Has anyone had a similar experience or any suggestions that might help to ease the pain both my sister and I feel.

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Babalou, I know what you mean. Today again, he immediately recognised my sister and became very verbal about him wanting to go home. I find it very strange that he was meek as a lamb yesterday and today very verbal. I know dementia can be erratic, but I also think it has something to do with the meds, which may be given at different times instead of the same time every day . I will have to have a word with the medical staff.
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Seenypa, you should certainly talk to the doctor about how much of what drug they are using to combat his agitation. But I'm not sure that any drug would cause him to "forget" who you are. That just might be the dementia advancing. Others on this board are much more knowledgeable about such things.
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I stayed away after the first visit for 2 weeks, while my sister visited. I was however more prepared when I went today. The sad part was that my dad had dozed off in a chair in the lounge and didn't recognise me at all when I gently woke him. I stayed on for another half an hour to chat, and in all that time he just smiled, nodded and was so polite, only because to him I was a stranger. The drastic sudden change in him is because of the drug and I resent it. He has dementia, but as I understood it and his doctor diagnosed, and, with me seeing him two to three times a week before the move, he was very lucid, and present, 65% of the time. He is now totally 'out of it' and the fact that he didn't recognise me, feels completely wrong. We wanted him looked after, not drugged into a coma. He has a prostrate problem, very common in older men, and isolated from dementia. Once he gets flushed when the prostrate is swollen, he is ok for 65% of the time. But seeing him today in zombie-mode, was painful. I'm going to have a word with his doctor on Monday about the meds he is taking. He is so meek and so very unlike himself. I may be wrong but I don't think he should be stilled to the point of being voiceless.
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Let me comment on the idea of outings. Sometimes they may turn out fine, other times they may not. The only outings I took my loved one on were mandatory, due to doctor visits and when I drove her to her Memory Care unit. Some went fine, but some did not.

On one doctor visit my cousin seemed fine and she repeatedly asked me if we were returning to where she stayed. She kept begging me to not leave her at the doctor office. She was intent on returning to the Assisted Living facility, however, when we pulled into the parking lot, she asked why were we stopping. She didn't know where we were. I had to explain that her room, bed and clothes were inside this place and that we had left there a few hours earlier. She was quite distressed and it was tricky getting her to go inside. Once inside, she asked to see her room and then she grew accustomed to the place and relaxed, but it was scary. That happened a couple of times. If she had flat out refused to get out of the car, we would have been in big trouble.

I would use extreme caution with outings when the patient is unhappy and ambivalant. Try to understand that what your dad may experience on an outing now is not what he might have experienced before dementia. He is not thinking the same way and may not appreciate the same things anymore. Is the possible benefit worth the risks? Unless you know the answer to this question I would use extreme caution.
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Seenypa, stay away for at least two weeks! California the social worker daily if you feel the need.
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Stay away for two weeks. If you get that antsy "I should be visiting" feeling, just CALL to ask how he's doing. Staying away feels wrong, but is a key factor in adjustment time.
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Chicago 1954. Thanks for those titles. My dad does not adapt. he is as fixated on and about things like they're cast in stone. I visited once and thought I should psyche myself up for the next visit.
Torn between visiting and staying away.
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Your dad will adjust. You need to give him time and stay away longer. Let the staff work with him. (My mother is 95 and in a NH. MIL is 92 and in ass't living.) You may be making it more difficult on your dad by dropping in.

If you and other family members are getting old enough to qualify for senior coffee at McDonalds, I think that the facility can care for him better. There are things to do, complete meals, showers, and exercise.

Besides, many times the patient outlives the caregiver. That happened in my family.

Read Coping With Your Difficult Older Parent and another one called The 36 Hour Day. They both spell out caring for the elderly pretty well.

Good luck and I hope he is adjusting and is just playing you for sympathy. (It happens.)
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Sunnygirl1, I needed this wakeup call. I got exhausted just reading through your list of things that he would need, which we are aware of and provided, but need to remember.
I think it's the 'early days' syndrome where we feel some guilt and or adjusting to yet another phase.

Ba8alou, good to know that we're not the only ones facing this. He will just refuse to get out of the car.
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I don't fully understand feeling guilty for placing a loved one in a safe place where they can get the care they need.

I suppose that some people may feel sad that they are not able to make their loved one happy and that if they kept them in their home, attended to their medical problems, changed their soiled clothes, prepared their meals, provided them with physical therapy, talked to them constantly, kept them from hurting themselves around the clock, provided their entertainment, and responded to every wish they made, that they would make their loved one with dementia happy. The problem is that even with all those things, the person with dementia is not going to be happy for long. The deterioration continues and the person will often cry, lash out, complain, become unreasonable and resistant. No one can make them content and blissful throughout all the stages of dementia. It's a fantasy if you think that can happen on your hard work.

I think that if you can understand that no amount of care can make them happy as you imagine it in your mind, you might grow closer to accepting your loved one's behavior.
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As an afterthought, as we drove Mom from rehab to the lovely assisted living place she had agreed to, she grabbed the steering wheel from my husband. Just something to think about.
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Seenypa, you need to let him settle in. See how it's going in 2 months, let them adjust his meds. Then reevaluate the idea of outings.
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The problem is we would like to take him for outings, but we would not be able to get him back into the facility, he will refuse to go. I guess it is difficult for everyone all round as is often discussed here.
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Snadwich42plus. I so agree. One is just never prepared. I am not a 'natural' nurse other than when it comes to my own kids. I've said the same to my kids. I'm also going to have DIL and that is different to having a daughter unless one is really 'lucky'.. I wouldn't put them through guilt, but it is about acceptance.
My dad has always had his way and when his wife died, we had no choice but to help him as his step family started abusing him. I hope he will eventually settle down. It is this last stage in life which can be very trying.
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You have no reason to feel guilty for taking care of someone and keeping them safe.

Guilt is appropriate if something illegal or immoral has happened, and it has not.

My whole experience has taught me that I don't want my kids to go through what I have. I am talking about "when you put me in care" and "when I am no longer living here and am in the care home". They are just teenagers, but I do NOT want them to feel guilty for doing what I need in the future.

Change is inevitable with age, and it has been a tremendous disservice to the caregivers out there now that we were all so unprepared to see the need for change, know what to do, and know where to get help.
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Thank you all for your encouragement. It's a tremendous help.

We spoke about it again an hour ago and I told my sister that we may be feeling bad, but he feels worse. I feel particularly guilty as I am the oldest and I feel like we have 'abandoned' him, and then I cant face him because I am chickening out from having to face him asking to go home. I feel the same about my presence being an agitator. But as you all say, we needed to place him in order to find a little normality as his needs increased. He got to a point where taking a shower became a huge effort and we would resort to bribes to get him to do it.

The problem is that we know there are times when he thinks and behaves 'normal' and it is that window period I dread and worry about, with him then at his full senses knowing what we had done.
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Change is extremely difficult for dementia patients. No, wait, that's not strong enough language. Change is EXTREEEEEEEEEEEEMELY difficult. Highlight that in yellow and make it blink. This means it's going to be difficult for you & your sister as well, but there is life on the other side.

His transition period may last for months, but IT IS NOT A SIGN THIS WAS A BAD MOVE. You have absolutely done the right thing. You now have all our permission to live your life, have happy days, enjoy things, and not shlep around some big weight of guilt.

My toddler son used to cling to my legs and wail like it was the end of the world when I left him at a new daycare. It was separation anxiety and it passed in time because he was able to learn that dad & I were coming back. Being there was in his best interest during the day because he got the care he needed. A dementia patient can't learn that anymore, so steel yourself for repeated high-drama scenes. Throw in the mental illness manipulation factor and it's just gut wrenching. One way to help this is not to hang around much.

If you want to know how he's doing, just call and ask. Explain that you're trying to let him adjust by staying away. My presence is an agitator for my mom, so I am not going to do that to her or myself just to meet some imaginary social obligation to "be there as much as possible".

My mom has dementia & personality disorder/mental illness at the same time, so our family rhythm is to visit about once a month and time it to be near any holidays. There is still part of me that wants to visit more than that, but it's a very negative experience when we do.
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Seenypa, you say that your father has been diagnosed with dementia, yes? Which is progressive, meaning that his physical and mental capacity is going to deteriorate, not stabilize or improve?

I guess I want to lay it out for you that way because you need to understand that it's not going to get better. He may stabilize for a bit, but if you have had a quality workup that says that he has a progressive dementia you have certainly done the right thing.

What if he simply has a mental illness, and not dementia? Then your sister needs to talk to the psychiatrists attending him to determine what his needs are. But from your past and current posts, it certainly appears that he has both dementia and some sort of personality disorder, and is much better cared for in a full time care setting.
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You did the right thing.Also ,the brave and loving thing.Don't let anyone place guilt on you, even yourself. It's only natural for you to second guess yourself and feel guilt. You are not abandoning him. You have him in a place you know he will be safe.As dementia progress, it takes shifts, SHIFTS,of people to properly take care of someone that can no longer do this for themselves.Find out if there is a support group for the families of your father's facility, if not, please find one. You have done what you can for him, take care of yourselves. This isn't selfish.If you don't take care of yourself how can you take care of him?Keep coming back to this forum. You are not alone. So many here are going thru the same things and you will find that your emotions are not unusual. Please take care of yourself, and I think your father is lucky to have children that are taking care of him.Taking care of your parent doesn't always mean it has to be in your house.People have to work, bills have to be paid, you need your own retirement one day.Again, I really believe you did the right thing.
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You and your sister did the right thing! It's hard for all involved, but your dad is safe and has three shifts of people to support him, along with others he can socialize with. Two weeks is a very short time to adjust - I'm sure you'll hear that from others. Driving yourselves into the ground with your dad's care won't help you two and your dad needs you there to support him.

I will tell you, my mom has short-term memory loss and has become a crier, which she never was before. The first few times she cried, it really shook me up, because that was NOT my mom. But I've learned that she'll cry and cry and 30 minutes later, she's forgotten the whole thing, because of her memory loss. I would imagine, with your dad's dementia, it's a similar situation. So it's probably much harder on you and your sister than it is on your father.

We can't make life perfect and we have to do what we have to do. And in this case, I think you've done the right thing.
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Oh and my sister was in tears after she left him and I had four hours sleep last night after the visit, worrying about him. We talk about it most of the time now and we are both feeling drained.
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