New to all this and dont know where to turn next

[Hanslope]

Hello , first post but have been a lurker since Feb
My 80 yr old dad has what is described as late stage dementia, I say this as I dont relate to him being so far down the line when I read some others describing their experiences. Sure he has very little memory but he knows his family. My mum has been his carer with our support ( we moved them to be near us) but as he is now almost wheelchair bound she is really struggling physically. He struggles most in the evening and during the night he wakes almost every hour. My mums health is deteriorating because she is exhausted. We have found a lovely home where he has had a few 2 week periods of respite. Presently he has been there 3 weeks and we think it is time for him to stay and let him and my mum have quality time together on visits and trips out. All was going really well until today when the home rang to say he was really unhappy all day and was getting stressed that my mum had left him for someone else. I cant tell my mum, she is struggling with guilt anyway and to just add this to the mix will result in her taking him hope and risking her own physical and mental health. I have calmed him down and reassured him but he will forget what ive said within a few minutes, The staff are brilliant and will reaffirm what ive said. My question is - does anti depressant type medication help with this or is there something else that may help? I recognise that sundowning is something he suffers with and I actually dont have any issues with him being sedated at night if it means he can relax safely. Any advice? We have an appointment at the memory clinic soon and I want to be able to ask for help rather than rely on them to offer us anything.

 

[karaokePete]

Hello @Hanslope, welcome to TP. I hope you will find the forum a friendly, informative and supportive place.

I don't have experience of this scenario, but do know that it can take a variable amount of time for people to settle in a new home.

My own wife is on meds for both depression and anxiety and well as Alzheimer's and I know that helps her quite a lot.

Here's a link to a Factsheet about depression etc., with dementia https://www.alzheimers.org.uk/sites...ownloads/factsheet_depression_and_anxiety.pdf

 

[marionq]

Anti depressants would help to calm him but you need to find the right one. My husband does very well on Trazodone but others not so well.

I think you are right to try to find a solution.

 

[nellbelles]

Hello @Hanslope welcome to TP.

Please don’t think of removing your Dad from the CH the reasons that he was placed there are still very real.
As a family you need to work with the CH to find a way to help calm your Dad.
Please arrange a meeting with them and see what that can help with.

 

[Tin]

Anti depressants can deal with a lot of things, anxiety being one, but it really is finding the right one. My mother tried 3 before we found the right one and it took time. but even that had some side effects that I had to deal with. Not so sure about sleep medication, sounds like your father has mobility issues and a sleeping pill like zopiclone may not be the answer. Talk to his g.p and see what they recommend.

If you can find the right anti depressant and time for it to take effect then you may have found your answer. You are right not to discuss with your mother and hopefully you and the care home will be able to solve this one.

 

[Hanslope]

Thank you for your responses.
Last night I got a call from the home to say my dad was extremely agitated and they couldnt calm him down. He is convinced my mum has gone off with someone and he wants out of the home to find her. I calmed him down by phone and he was given 1 2 1 care overnight. This morning I spoke to staff who said he had been going into other rooms and had really upset one lady who was being washed at the time. I am so saddened by this as this isnt the gentle man I know. The home have mentioned that if we cant get to grips with his behaviour- frustration they think it is, then maybe 'EML' (not sure what that is going to involve) I am scared of what the future now holds. The home seemed perfect but I understand if they cant cope with him then they shouldnt put the other residents at risk. They told me he is hallucinating a lot - we dont see much of it because we visit during the daytime and ths happens at night. I wonder whether visiting him every day may settle him more. We decided on every other day because we felt that he may settle better. This is all going to distress my mum so much. The home are talking to the memory services this morning to try to get support, is there anything else I can do? For the first time ever I feel totally helpless- v difficult for someone who takes charge and sorts things for everyone!
Thanks for listening

 

[Shedrech]

hello @Hanslope
it's a good sign that the manager of the care home has called in support, that's the right thing to do
my dad went through a challenging time shortly after he moved into his care home - I was really concerned that he would have to leave and be sectioned - the Community Psychiatric Team were called in to help him, the staff and family - they reviewed his meds and suggested some approaches for the staff and followed up later; it was reassuring to know that they did so
dad gradually settled and the staff learned to spot the signs that his anxiety was building
so although my dad's challenges weren't the same as your dad's, my experience is that medics and staff can work well to support a resident and keep them in their care home if that is the best place for the resident
I appreciate what you mean about feeling helpless - I saw myself not as the one who should/could sort things out but as one of the team working together to support my dad, and my role was crucial, being the one who knew my dad of old and his experiences of dementia over the previous years - that helped me feel helpful and needed
keep talking with the staff, good relationships with them will benefit all your family - maybe ask them about visiting, though don't visit more than you yourself are comfortable with, you need to nurtire your own life too

 

[Hanslope]

Dads consultant rang me after the home had spoken to him. He is seeing my dad a week today and until then he doubled his dose of tramazone in an effort to calm him. He is zonked but not agitated. The home have been great and are actively seeking support so he can stay with them. I feel very lucky. Dad wandered into another residents room searching for mum- she was having personal care at the time and was hugely distressed by him being there. She doesnt have dementia so wont forget. The home have been great with her too and have implemented lots of things to safeguard her from it happening again. He raised his fist at one of the carers too -Its very hard to hear that this person who I know and love is behaving in this way. i cant quite believe how quickly he has deteriorated - we are questioning if we have done the right thing in having him in a home rather than at home. Do people deteriorate quicker because they are put into this environment?

 

[karaokePete]

Dads consultant rang me after the home had spoken to him. He is seeing my dad a week today and until then he doubled his dose of tramazone in an effort to calm him. He is zonked but not agitated. The home have been great and are actively seeking support so he can stay with them. I feel very lucky. Dad wandered into another residents room searching for mum- she was having personal care at the time and was hugely distressed by him being there. She doesnt have dementia so wont forget. The home have been great with her too and have implemented lots of things to safeguard her from it happening again. He raised his fist at one of the carers too -Its very hard to hear that this person who I know and love is behaving in this way. i cant quite believe how quickly he has deteriorated - we are questioning if we have done the right thing in having him in a home rather than at home. Do people deteriorate quicker because they are put into this environment?

Yes, a new environment can disorientate a person with dementia but they often settle.

 

[Shedrech]

hi @Hanslope

Do people deteriorate quicker because they are put into this environment?

yes, a move can be disorientating
I have a different take on that
my dad moved into his care home just over 3 years ago, after wandering at night - I questioned whether it was too soon, as just about everyone does - when he had his challenging moments, I worried that he wouldn't have been like that if he'd been at home, as we do - I feared the downturns I was seeing were because he was in a home not at home, which is natural
then I realised that actually the main difference was that I was seeing dad differently - after being a hands on carer and with him all day I had simply got on with it, not really noticing the gradual changes - not being with him all the time meant that I noticed more
and the challenging behaviour - well, I simply could not have coped with that on my own with him still living in his home, and the cause was his dementia not his environment - to me it was evidence that he did need to be where he was with a team of carers looking out for him, so it had been the right decision to have him move in

I feel for you knowing that your dad is wandering as he has, though it is not at all unusual - in dad's care home the staff always lock the room door when helping with personal care, so only staff can enter, and then they knock first
nor is it unusual, sadly, for residents to hit out - it's rarely malicious, mostly because in essence we are animals and will defend our personal space when something we don't understand happens, and of course for someone with dementia understanding that someone is helping them can wane and so instead they perceive a threat and react - the staff will be pretty good at reading body language and learning the waring signs and triggers for each resident so diffusing most situations

 

[canary]

Im assuming from your comment that the lady whose room he wandered into did not have dementia, that your dad is in a mixed dementia /non dementia care home.

Carers in these sort of homes have very little training about dementia and frequently do not know how to deal with it which can exacerbate the problems. The comments that @Shedrech made about the staff knowing how to diffuse the situation, though true in a dementia care home, may not be true in a mixed home. Im wondering if the problem is that your dad is in the wrong sort of home and he would be better off in a dementia home where the staff know how to deal with dementia.

 

[Hanslope]

Thanks both
@Shedrech - thats a really good way of looking at the situation, I shall share with my mum.
Thank you so much

 

[Chrissie 55]

Hi first time on.my mum has just gone into a care home after 5 weeks in hospital she fell and fractured her pelvis been in there 4 weeks now she was prescribed an antihistamine that they use for people with dementia mum was getting very agitated shouting swearing not sure what it is called hope this helps