And I thought it would get better......

[AndreaP]

I'm very glad to have found this forum I have to say

I live in Australia and have a 91 yo mother with dementia. Last week I finally got her a respite place with view to permanency in a beautiful nursing home. I had looked at about ten places and this was top of my list. She went kicking and screaming (not literally) and only because I finally convinced my brother that she should no longer be living alone. With the two of us united we brooked no argument from her and she realised she was beaten.

I thought my worries would be over now she was cared for and did not have access to a phone. What a blessing, I thought, that she can no longer make constant phone calls asking me the same questions over and over....

She has been there one week tomorrow and there has been 2 incidents of bizarre behaviour in that time. No doubt due to "sundowning" she has been pushing her furniture in front of her door at night (they have removed it now) and found once lying on the floor and another time roaming the corridors. She has told me crazy stories about bikies hiding stolen cars in the roof space and coming at night to get them.

I find that it is difficult to ensure things they promise to do are done. She was supposed to see a hairdresser Tuesday but it didn't happen. She fell and hurt her back and a doctor was called at night but no pain medication was prescribed. She saw the doctor Tuesday on his normal visit but forgot to tell him her back hurt and no one informed him. I had requested sedation be prescribed for her at night but the doctor was not informed. She says there are no day activities but I can't be sure if this is true.

The staff are very nice to her and she loves the food but there is complete silence in the dining room. The residents don't speak to each other at all. Is this normal? It is a high care ward although not a secure dementia ward.

Mother complains endlessly which is very hard for me. I feel like just taking her home and letting her struggle on as before but my biggest opponent, my brother, now surprisingly says this can't happen. He has been in denial of her dementia ("she's 91, of course she's forgetful") until now although night time hallucinations have been present for a year. I think he's finally woken up to how bad she is.

Part of me is terrified they won't keep her after respite has ended. I just wish she would die peacefully in her sleep. What life is this for anyone to live? I am so angry at the doctors who gave her a triple bypass 3 years ago when dementia signs were well and truly present. Sigh.

 

[marionq]

Andrea we all know where you are coming from on the dementia front - Australia or UK or anywhere the problems go on. I think your Mum needs a sedative at night to stop her roaming, she should definitely have had the back pain dealt with, and the moaning is probably just her exerting her right to complain!

The lack of conversation is because they need stimulation from staff to kick start chat. Each of the homes I looked at had plenty of staff but they were talking to each other rather than to residents - I can understand why but it doesn't help them to socialise.

Most people will tell you to give it time and she will settle in.

 

[Amy in the US]

Hi, Andrea, and welcome to TP! I don't know that I have time for a proper response but didn't want to read as run. I am glad you found your way here, but sorry that you needed to, if you know what I mean.

There are many of here who know what you are talking about. The short answer is, give things time (maybe days, weeks, or months) for your mother to adjust to her new living situation and settle in.

Also remember that it is an adjustment for YOU as well. As you say, if she is in a care home/nursing home/facility, you no longer have to worry about her physical safety, as you did when she was living alone at home. For many of us, having our person with dementia living alone at home was a challenge in so many ways: basic safety, possibility of accidents, not eating, not bathing, not taking medications, being alone, the list goes on. Others here are/have been caretakers of their family member, which is a whole other set of challenges. Either way, there can be relief, as well as other emotions, when a person goes into care.

So you're right, that the move to a facility eliminates a lot of those problems and means an end to a lot of your worries, as you say. However, you're still a carer/caregiver, just in a different way, and that takes adjusting to, as well.

Some practical advice: contact the nursing home often for regular updates. Given that your mum has dementia, and is adjusting to a new place, you cannot count on her to accurately report things to you (I know you know this, but still). The staff can tell you what she is and isn't doing, and so forth. I am still learning, after my mother being in a care home for six months, how to communicate with the staff most effectively. Give it time and be a squeaky wheel if that is what it takes.

It's highly unlikely there are NO activities during the day. My mother's facility has a daily schedule which they mail to me, and that I can view online (menus as well). I imagine most nursing homes will tell you, if you ask, but you may not think to ask.

Things like getting the hairdresser appointments set up do take time and are, for whatever reason, harder than it seems they need to be. Again, try to be patient but clearly tell them what you want done (and LOUDLY tell them, if need be). A week isn't much time.

If your mum stays at this facility, and you've not had a formal meeting/care conference/whatever you call it in Australia, with the staff, request one. This should be a meeting with an administrative person, a charge nurse/nursing supervisor person, and maybe another staff member, where they review your mum's history with you and talk about her care plan and answer any questions you might have, in person.

I have to dash, but more later, and others will be along as well. There's a lot of good information, advice, and support available here on TP. I know this is terribly difficult and overwhelming and just plain awful. Please hang in there.