would you share with me ...

[connieonny]

...the stage very roughly, when your loved ones entered emi nursing care? We are still trying to be sure in our own minds. We have learned over time that determining the stage of this awful disease is not easy, that you can only take a broad overview of symptoms/behaviours to get a good idea, but what stage did you decide upon nursing care? What were your reasons for your choice? Was it, for instance, because the confusion had become so grreat, or was it that there was a greater staff ratio, with more understanding - perhaps a mixture of both. Anyone who was also borderline, but chose the nursing home route so that there was only one move?
Anything you can share would be really helpful. Time to think is still on our side, fortunately.

 

[bad daughter]

Our mother was always contrary so it was difficult to tell whether she might be suffering from dementia or if she was just her usual self! No way we could have broached the subject with her.
A series of events took over. Her driving licence needed renewing, and we agonised about how to prevent her continuing to drive. She was losing weight and my sister who lived the nearest was getting ever more confused telephone calls. We always said we wouldn't be able to do anything drastic until a crisis happened.

When it did, Mum ended up sectioned and we were advised that a move to a CH would be the best thing. So we found a really fantastic one and moved her from hospital to the home (for "convalescence")

She's looking much better, eating 3 square meals a day and leading the staff a merry dance. But every time any member of the family visits she goes into "get me out of here" mode. At first, given the lucidity of her complaints, we were wracked about whether we should have allowed her to stay at home longer with maximum assistance from carers. But as soon as she is agitated, the true extent of the disease becomes apparent. The agitation can be caused by any sort of decision-making (eg deciding on whether or not to buy a Mars Bar at the local Spar) which indicates how she would be if still at home and feeling responsible for all those things that she now doesn't have to worry about.

That's our story - hope it helps!

 

[leedsfan]

...the stage very roughly, when your loved ones entered emi nursing care? We are still trying to be sure in our own minds. We have learned over time that determining the stage of this awful disease is not easy, that you can only take a broad overview of symptoms/behaviours to get a good idea, but what stage did you decide upon nursing care? What were your reasons for your choice? Was it, for instance, because the confusion had become so grreat, or was it that there was a greater staff ratio, with more understanding - perhaps a mixture of both. Anyone who was also borderline, but chose the nursing home route so that there was only one move?
Anything you can share would be really helpful. Time to think is still on our side, fortunately.

Hello,

Just wanted to say that the situation with my dad is slightly different to yours as the decision was made for us really, following several episodes of Dad wandering and getting extremely upset and agitated. It was decided after GP examination and SW assessment that Dad would go into the EMI unit of a local nursing home.

This initially was very upsetting as I had been able to care for my Dad in his own home for nearly 5 years, but the definate downturn meant that four carers a day plus me simply wasn't enough, he needed 24/7 care, and due to other needs with personal care and his bladder incontinence. plus very poor mobility, he moved into a local nursing home just over three weeks ago.

I was worried because, Dad has had a successful and professional life and at times is very lucid. At first he was concerned that he was in a unit with some very poorly people, who are quite a bit older then Dad, (he's 77), and further down the dementia path, also there are only two other men on the unit. Dad quite likes his own company and prefers to stay in his room, he is served his meals in his room, because that is what suits him, and he goes into the residential side of the home sometimes if he wants to socialise. The staff are always around if he needs anything, even for simple things like if he forgets how to turn his tv on, or put a CD on.

I know my Dads condition will not improve and in time will get worse so because of this I am sure in my mind and my heart that the correct decision has been made, and I just hope he can stay where he is now after the increase from 3 to 5 week assessment period the SW has requested. The staff, nurses, GP,SW and Consultant Psychiatrist are all of the opinion that Dad needs the good care he is now receiving.

What ever you decide it's not easy, but you just have to do your homework, check out all the different Care/Nursing homes in your area. Speak to as many people as you can and trust your own instincts.

I wish you well, take care of yourself along the way.

Jane

 

[Christin]

Hello Connieonny, I think, for us, it was when we reached a stage when the confusion was so great. I agree with the poster above, we were wracked with doubt as each time we visited demands were made to come home. However, on speaking to a new GP, we were assured it was absolutely the right decision and the right place. Other family members also supported the decision. After that I was able to put some perspective on the decision.

It is a very tough time, take good care of yourself too. X

 

[Jaycee23]

We realised that mum was not quite right and more than normal was sometimes quite nasty to my dad. He became ill and during his last six months we were having to deal with mum and her agitation and denial of any nurses that visited dad to the point that she would put her face 3 inches from his and start screaming at him that no doctor or nurse had been to see him that day. She would say he never washes and smells so we got the district nurses to come and help but she told them to clear off as he was her husband and quite capable of doing it, but she didn't. They gave him a chair to sit on that was high enough to reach the sink but she would not let him use it. Six months of dad being constantly admitted to the hospital and back trying to find out what was wrong with him. Mum refusing to let us speak to hospital staff and saying that they should tell her. When he came home to die basically, she would forget to give him fluids and shut him in the room and forget about him and do jig saws!! I think that the stress was shutting everything down and she was switching off. When he passed away it was like motions of dealing with the grief of dad and the problems with mum. She was still in denial and desperately lonely, it must have been hell for her. When I took her shopping, she would step out in traffic, she would not wash or change her clothes but always washed up and did her washing. The accusations started to come and the she needed prompts to do anything. She stopped doing jigsaws but became obsessive with word search books, body sprays and ice cream. She refused all help and if anything cost money she would not have it. Eventually she was sectioned and spent 7 months in hospital and now in a nursing home and when you visit she starts crying and ranting that she wants to go home and banging anything she can to get out. She recognises us but only as the ticket to get out of her situation. You then start to wonder if she would be better at home with a full on carer but then you realise that the carer would probably be throw out of her home and she will never be happy where ever she is. Its hell!! I wish she could go with my dad and that feels kind rather than cruel. I know in my heart that she wants to die. She has always said she wants to be with my dad and to let her go and begs and begs it breaks my heart that now I feel my eyes welling up. This illness is far worse than what my dad went through (he died of cancer).

 

[connieonny]

So pleased to have your responses ... I think we feel clear on the way forward one minute, but the next we are back at square one. Overall, though, we know the time has come for care because we simply cannot keep her safe overnight.
For us it is 24 hour needs: Mil wanders the house at night, is frightened and alone if we don't hear her, becomes incontinent once the agitation starts up, and no amount of reassurance will help. During the day, when she is with us, she is thoroughly morose, can be hostile verbally to her daughter (and me sometimes), has been known to lash out, and in between all of this sits for longer and longer periods simply with her eyes closed. She is eating well, more and more with fingers, and increasingly looks at her meals and declares she cannot eat such an amount (though she does)- her weight is good and yet she looks frailer, much slower. She would not drink unless pushed, and in fact most of her needs have to be anticipated. Speech has declined, silent a lot of the time, and when agitated she becomes incoherent. She is very confused. And as I type this I think yes, nursing care in an emi unit would be best - and she isn't going to get better is she! She would be unable to take part in any decisions about care - and that is the hard part, isn't it? Deciding about someone else's long term future without them being aware.
Thankyou all. Shall keep you replies for reference.

 

[connieonny]

Oh Jaycee, I am so sorry to make you cry - such a lot to cope with. But thankyou for giving me your story. No two people can be the same, but there sure are similarities. My MiL too would be unhappy wherever she was - she is unhappy here with us, and will be unhappy when she is moved. My FiL died of cancer also, and I wonder who got the better deal because seeing anyone in MiLs state is just awful. She has lost everything and yet, despite everything, despite all her many problems and confusion, she tries as hard as she can and, well it just is not fair. She has been a wonderful Mum, MiL, Grandma, worked so hard during her life and this is why, because we are lucky to have time to choose, we are reasearching every thing we possibly can. We want her to have the best care we can find.

 

[Sherry Trifle]

...the stage very roughly, when your loved ones entered emi nursing care? We are still trying to be sure in our own minds. We have learned over time that determining the stage of this awful disease is not easy, that you can only take a broad overview of symptoms/behaviours to get a good idea, but what stage did you decide upon nursing care? What were your reasons for your choice? Was it, for instance, because the confusion had become so grreat, or was it that there was a greater staff ratio, with more understanding - perhaps a mixture of both. Anyone who was also borderline, but chose the nursing home route so that there was only one move?
Anything you can share would be really helpful. Time to think is still on our side, fortunately.

I agree with bad daughter. It was a chain of events that took over with my mother in law too. Care in the home was becoming so difficult. MIL not eating, confused, endless calls to the family day and night. Then came the falls.... one resulted in broken ribs. After eight weeks in hospital the family were told that MIL was not in a fit state physically or mentally to go home. She has now been in a beautiful care home for four weeks. She will not admit that it is the best thing. She looks amazing and her frame of mind is so much better and she is eating really well. It's the best of a bad situation. You will know what the best thing is to do.... And the best for your family ... Hope this helps. Do take care and all the very,very best. Please let us know how you get on. xx

 

[zelana]

We had no choice where Mum was placed as it was done as an emergency after she was found wandering early in the morning last November. As well as dementia Mum has also got a large lump in her abdomen which is probably colon cancer. She hasn't had full investigations because of her general health & dementia.

We had originally decided that once POA came through we would move her to a home either near me or my brothers as at that time she wasn't settled where she was. We had to look for a home that was residential/EMI & nursing as we felt the one move option was the best for Mum. She used to wander round and round the home looking for an unlocked door so needed to be in a secure environment. Not all the homes were secure - my daughter looked at one and immediately ruled it out as she'd been able to walk into the home and stand in the foyer for several minutes before someone saw her. Even the secure part wasn't actually that secure as she noticed the key code was written near the door.

Of course Sod's Law kicked in and by the time we got POA Mum had settled where she was and so we decided that as it was residential, EMI & nursing the best thing for her was to leave her where she was. If they hadn't been able to cater for her future needs we would have moved to to somewhere that could.

If I'd gone to look at the home before Mum was taken there I would probably have ruled it out as it's a bit like a maze with narrow corridors and multiple ways to get to Mum's room. The rooms aren't very big and the decor isn't the best but the staff are brilliant. Mum has no conception of time and wanders at night but the staff settle her in a recliner in the lounge and she usually drops off to sleep.

 

[Farmergirl]

We initially had mum move in with us when she was ringing the police on her neighbours and flooding them because they smoked. At this stage she couldnt pay bills, kept reporting her bank card stolen, going shopping with no money etc.
So she moved in with us, and stayed until she set fire to the kitchen one night when we were sleeping. Then she went to a residential home. They kept her till last month when her repeated escape bids and falls were becoming too frequent.
Now she is in an EMI home. She has reverted to her mother tongue and dosnt recognise my brother. She gets visited by dead relations and thinks she has misplaced a baby somewhere.
But, she can sit happily and eat strawberries and tell my teenage daughter that her hair looks pretty today.

I went with gut instinct -if I felt my anxiety going up then this was the signal that the situation had to change. Shes quite content in the EMI (even though there are a lot of strange people there).

 

[benjie]

when is the right time

The right time is when it happens - and you alone will know. Your loved ones are all MIL,FIL fathers, mothers etc. I have nursed hubby for 20 months from being skin and bones and even at the start they said 24/7 care and had him on pureed diet. He came home I fed him up - cooked breakfasts, lots of puds and fruit and soups and meat and 2 veg etc and spag bol, beef in red wine - whatever he wanted he had - a well balanced diet. He's put on 2.5 stones in 20 mths and has good upper body strength (cant walk) + is building up his leg strength too. Then blow me he has a "relapse" lashes out + I get the punch on the chin. Sectioned, kicks paramedics and now heading for a home hopefully the best and where he will get the gp attention that has been enormously lacking. But I will find the best and make sure I get ALL boxes ticked and have as much involvement in his care plan as poss + and more

 

[connieonny]

Thanks to all of you who have kindly replied. So helpful.