Moving dad to a new home

[Elise]

After making a fuss about the state of the hospital that dad is in, they have offered him a place in a home that is nhs continued care for dementia patients. I went and took dad with me a couple of time to see the place and it seems to be very nice. Well a lot better than the place he is in at the moment as far as i am concerned. The doctors are no help at all, its a case of they need to know what i want to do as they need the bed in the hospital he is in now. I had placed him in a private nursing home two months ago and that all went pear shaped, as dad showed his disapproval of it and attacked a helper there twice. " I have to add though she was not a very nice person at all" and that i got from a one of the residence there. So he had to go back to the hospital. The strange things was he seemed to be OK when he got back and said he did not like it there. So i was told to leave him for a while. Now the doctors are telling me to make my mind up as, like i said they need the beds. When i ask him how he feels about the move as i don't want to make the same mistake again and just move him without warning him, he said he is scared and not sure. This place has, as i see it as a lot more to offer for him. More space, more activities and a occupationalist therapist that comes in three time a week. I want so much more for him. It seems at the moment i have been on my own to try to keep him occupied and trying to preserve what is left of him, as in the hospital they do nothing to occupy the patients and there is no stimulation at all. I want to keep him going as long as possible. He played Noughts and Crosses with me the other day and beat me. I know that there is a lot there still to work with, and i can't just give up on him. He is, as with all other suffers a very special person, but most of all he is my dad, everything to me, and i would do anything to help him. I am so scared that i am doing the wrong thing. He seems secure where he is, with familiar surroundings, but i can't even take my children to see him unless it is outside for fear of other patients scaring them. On a few occasions my children 11 and 4 want so badly to see their grandad, and on taking them to the hospital they have come away scared and upset due to other patients swearing and the constant noise and screaming that goes on. It is not a nice place to take children, so what do i do?? Has anyone had the same experience and can they give me some advice as to am i doing the write thing in moving him. I just want the best for everyone. My dad and my children. So sorry for going on for so long but my story just never seems to end. I have so many fears and frustrations and really don't know how to deal with them. I would be so grateful of some feed back from anyone.

Thanks for listening

 

[daughter]

Hi Elsie,

I can understand your dilemma about moving your Dad, after your having had a bad experience before, you want to make sure that you are doing the right thing. I expect you know that a move will not be without some upset and your Dad is bound to be apprehensive about any change.

Still I would say that, taking everything into consideration, that seems your best course of action. The hospital, with all the acute cases, is not a long term solution regardless of whether the doctors are wanting the bed space. Although the private Home didn't work out, I would bite the bullet and try the Home offered with "More space, more activities and a occupationalist therapist that comes in three time a week". It's a tough decision but it could turn out to be a really good move for your Dad, your children and yourself. Good luck,

 

[EllieS]

I know exactly how you feel

Mum cared for Dad with Parkinsons Disease and Lewybody Disease - during the last year of his life they were confined to their 1-bedroom flat due to Dad's mobility problems. With hindsight Mum's memory was getting pretty bad but when he died in February last year Mum was lost and very very depressed and not taking her anti depressant medication. She was admitted to a local hospital to get her medication under control - while there she had a scan which showed signed of early Alzheimers - anyway to cut a long story short, she was in hospital for 3 months and toward the end she hit a nurse because they stopped her from leaving the hospital (she was trying to go home, not being sure where she was!) so she was given a 72 hour section. Immediately after the 72 hours we discharged her into the care of her sister for 1 month pending a room being available in a Residential Care Home (we needed to try to settle her to avoid her not having to go to a secure dementia unit. Anyway, again, to keep it short - we managed to do this and she's been in that Care Home for 10 months . However, more recently she has again been unsure of where she was and left and successfully found her way to her home 25 miles away - this happened on 3/4 occasions and the home were concerned for her safety and had to ask us to find a secure residential home. (Have you tried to find a secure residential - NOT nursing - home - just not around!) So, she is now (2 weeks ago) in a Secure Nursing Home. It's a new building, clean with staff that seem to be happy, lively and caring. The environment is not nice though and I do not mean that disrespectfully to any of the residents but although Mum is more than able to communicate because of her short term memory problem she does not know where she is, doesn't recognise any of the residents or staff (SHE HAS NO PROBLEM AT ALL RECOGNISING FAMILY THOUGH THANKFULLY) and therefore doesn't speak first. I visit daily and it breaks my heart to hear her ask what she should do when I leave - "I'll be on my own". If only she didn't have to be in the Secure environment - perhaps more people would talk to her and help her to settle & be more content. There may well come a time when she is as poorly as the poorest resident where she is now but she's just not ready for that now. But what can I do! If only there was such a thing as a secure Residential environment - where elderly people, still able to communicate but needing to be safe could live. It's driving me mad - I feel so bad that I can't get it right. Does she actually have Alzheimers or would therapy/counselling help her to overcome the trauma of the previous year and the distress and loss of Dad. It's all too easy to slot people into the wrong category - but what do I know? I'm only glad that my children are old enough to be able to "cope" with the sad sights when they visit their Nan and can fully understand your concerns with your children. Perhaps the answer is to take your Dad out for an hour with your children - if he's up to it, it would be nice for everyone then. I, too am sorry to have gone on............but am glad that yesterday I found this Forum! Be kind to yourself because you, like me you are doing your best and somehow we have to come to terms with this dreadful situation - or is there anyone out there who can suggest anything more I can do .

 

[daughter]

Hi Ellie,

"am glad that yesterday I found this Forum" - Welcome to TP!

I'm sorry but I don't have answers to your questions, someone else may be able to help. Take heart, perhaps your Mum may come to know some of the other residents after a while longer. My Dad talks to others now and Mum and I have got to know some of them too. I have to admit it scared me first of all, when I visited, but I now know some of their individual ways and feel more relaxed.

My Mum visits my Dad every day. When she leaves, she usually goes at tea-time so that he has something to occupy him when she's gone and she says she's 'just going to do some shopping'. I know it's hard to leave when your Mum's upset but, (and I don't mean this in a patronising way), I liken it to when I had to leave my children at Playschool for the first few times and they were crying. The teachers would nearly always tell me they'd settled quickly after I'd left. I reckon this is probably how it is with our parents most of the time. Perhaps you could leave something with your Mum (a soft toy, if appropriate?) for her to 'look after for you' until you return? Something to distract her attention from you leaving.

P.S. We often take Dad out and this week we went to a park where my daughter and her children (aged 5 and 2) came too. We had a lovely afternoon, although Dad got a bit fidgety at times!

 

[mailife49]

hazel

Dear Hazel,

just to say I liked the way you compared your goodbye to your dad to the way you used to do it with your kids when you left them in care......I used to do that too.......

It's hard isn't it, but sometimes we have to tell little white lies to make it easier for our loved ones who are suffering from these diseases......

Sometimes it's good to try and get them to remember, depending on their memory faculty, other times it's better to be softer and just say, "Oh, I'll see you tomorrow." like I did recently with my mother and knowingly knew I'd be on the plane 2 days later.......It's all so...................agonising. With physical diseases , at least you know you can calm their minds a bit, and therefore alleviate their souls a bit, but with this we never really know what is helping and not helping.......

Anyhow, you sound like a good person - stick in there and remember there is a person there somewhere and believe in life after death if possible, maybe it's not in your case, but I do.....it's my only way of making sense of all of this, mother will go on to another level because of her goodness plus suffering...... anyway that's what I believe, I understand if loads of you don't.......

Good luck,
mailife49

 

[Elise]

I so understand were you are coming from

Mum cared for Dad with Parkinsons Disease and Lewybody Disease - during the last year of his life they were confined to their 1-bedroom flat due to Dad's mobility problems. With hindsight Mum's memory was getting pretty bad but when he died in February last year Mum was lost and very very depressed and not taking her anti depressant medication. She was admitted to a local hospital to get her medication under control - while there she had a scan which showed signed of early Alzheimers - anyway to cut a long story short, she was in hospital for 3 months and toward the end she hit a nurse because they stopped her from leaving the hospital (she was trying to go home, not being sure where she was!) so she was given a 72 hour section. Immediately after the 72 hours we discharged her into the care of her sister for 1 month pending a room being available in a Residential Care Home (we needed to try to settle her to avoid her not having to go to a secure dementia unit. Anyway, again, to keep it short - we managed to do this and she's been in that Care Home for 10 months . However, more recently she has again been unsure of where she was and left and successfully found her way to her home 25 miles away - this happened on 3/4 occasions and the home were concerned for her safety and had to ask us to find a secure residential home. (Have you tried to find a secure residential - NOT nursing - home - just not around!) So, she is now (2 weeks ago) in a Secure Nursing Home. It's a new building, clean with staff that seem to be happy, lively and caring. The environment is not nice though and I do not mean that disrespectfully to any of the residents but although Mum is more than able to communicate because of her short term memory problem she does not know where she is, doesn't recognise any of the residents or staff (SHE HAS NO PROBLEM AT ALL RECOGNISING FAMILY THOUGH THANKFULLY) and therefore doesn't speak first. I visit daily and it breaks my heart to hear her ask what she should do when I leave - "I'll be on my own". If only she didn't have to be in the Secure environment - perhaps more people would talk to her and help her to settle & be more content. There may well come a time when she is as poorly as the poorest resident where she is now but she's just not ready for that now. But what can I do! If only there was such a thing as a secure Residential environment - where elderly people, still able to communicate but needing to be safe could live. It's driving me mad - I feel so bad that I can't get it right. Does she actually have Alzheimers or would therapy/counselling help her to overcome the trauma of the previous year and the distress and loss of Dad. It's all too easy to slot people into the wrong category - but what do I know? I'm only glad that my children are old enough to be able to "cope" with the sad sights when they visit their Nan and can fully understand your concerns with your children. Perhaps the answer is to take your Dad out for an hour with your children - if he's up to it, it would be nice for everyone then. I, too am sorry to have gone on............but am glad that yesterday I found this Forum! Be kind to yourself because you, like me you are doing your best and somehow we have to come to terms with this dreadful situation - or is there anyone out there who can suggest anything more I can do .

Hi Ellie

Thank you so much for answering my message. I do understand were you are coming from. Dad was devastated when mum died three years ago, he was her carer for so many years and when she died it destroyed him. Evan if the dementia was there before, and it probably was, he let go of all hope when she died. Nothing left to hang on for. Even though he has "the rest of his family", When you care for someone for so long it can over take any other purpose in life. I moved dad to day to the place offered. This is a secure residential EMI unit and as i said before seems very nice, but only time will tell. On going to get him from hospital he was so scared of going and almost begging me not to take him. I have to say i have never felt so confused and guilty in my life as i did today. Eventualy with the help of my friend we managed to persuade him to come out with us. On arrival he had a very bad stomache, but was helped promply, and he seemed OK about this. Later it happened again, but this time he was more upset, and restless. He hates when this happens and can't deal with it himself. !Well who wouldn't when when you are still aware of thing going on. He soon settled after i took him in the garden for a cigarette. He even scolded me when i showed him him things that i had found in his house, Old things to help his memory, like an old camera of 50 years and some very old coins. He said "Why have you been going through my chest of drawers?. I managed to get away with telling him that i had to put new furniture in his house for him, and just tidying up for him. We on one hand are lucky enough to have our parents with this disease that they still remember quite a lot in a muddled type of way, but they still remember, but when you try to do the write things it hurts when they show their disapproval. I am astonished that your mum was able to find her way home on more than then one occasion. What a thing to hold on to. She still remembers, and what a thing to remember, her way home. Some times i think with things dad has said to me that he will come out of this and that its all been a big mistake. He's coming back to me and things will get back to normal, it was never dementia that made him like this and that we will be OK in the end. Its a hard reality and i am finding it so hard to come to terms with. I thought in the beginning that counselling would help and therapy but it all happened so quickly. Your mum sounds like a very determined lady and maybe we should take some comfort from that, that they will hang on as long as possible, but i believe that so long as they have a good family system around them it helps them stay stronger for longer.
You are not on your own and i am sure thinking of you. You will find the right place for your mum as i hope i will do the same. We can only hope for the best.
Thinking of you
Elise

 

[EllieS]

Thank You Thank You Thank You

Thank you so much for knowing what I'm on about. I'm also glad I've managed to find the "thread" - thought I'd lost it! In fact, think I'll soon be in a room adjacent to Mum's. This whole thing is doing my head in.

I only wish I could be like my brother, who has washed his hands of Mum! His head is clear.

When Mum found her way to her home town - on 2 occasions she arrived on hs doorstep (he lives in the same City as our family home was) but this wasn't a problem because he gave her a cup of tea and put her in a taxi (on her own) back to the Care Home 25 miles away!

This is partly why I'm so concerned, because it's not really unreasonable to want to see your son (he only visited every couple of months for an hour and never phoned) and although she was obviously at risk because of her short term memory problems - it just seems so very wrong for her to have to be where she is. Who knows, now she's close to me with regular visits from myself and my 2 adult sons - will that be enough to keep her from needing anything more which would mean she could be in a Residential environment again.

Her scan apparently showed signs of early AD but I'm also advised that they cannot confirm the diagnosis until after death, so - are the signs of early AD different from the signs of "normal" ageing dementia of a 79 year old woman who has had an absolutely horrid year culminating with the death of her husband and prior to that 2 years not so bad, and prior to that a year in some ways worse , with Dad being sectioned for 3 months - being expected to die on 2 occasions - saved only by my Mum spending 12 hours a day with him and staying in a B&B at night!

I am in cloud cuckoo land or could it be that Mum has a chance if we can only get her some stimulation/therapy - anything to help.

I know I probably sound like a nutter but I am just unable to accept things until I KNOW they are absolutely correct and that there's no other explanations. If Mum was in an environment where people were talking to her, she would communicate well with them - albeit she'd forget their faces/names & conversation by the next time.

God I don't know - thanks for listening . I'm sorry I'm droning on about my worries.
Ellie

 

[Nell]

If only there was such a thing as a secure Residential environment - where elderly people, still able to communicate but needing to be safe could live.


Dear Ellie {{{{{{{Ellie}}}}}}}}

My heart went out to you when I read this comment. I realise just HOW fortunate my family is in this regards (we are Aussies). Mum and Dad are living in a secure residential hostel which takes people who are in need of the security but are not yet ready for a Nursing Home environment. My Mum does not even have an official diagnosis yet but she was accepted by the staff as needing this kind of support and they were able to take both M&D. This has been a continuing worry for our family - what we would do if one or other parent needed care but the other couldn't join them. I think we have been blessed that this Hostel (which is also brand new, "state of the art", with all sorts of facillities) was willing and able to take them both. At present Dad does not show any signs of dementia - but as he is severely disabled and has relied on Mum as his sole caregiver for everything for the last 15 years, we could not imagine how he (or we) would cope if they were not together.

I realise from reading your post just how lucky we are. I am thinking of you and your mother and sending you my warmest wishes. Nell

 

[EllieS]

Thank you

Dear Nell

I can't believe how nice it is to have someone understand!

Best wishes

Ellie