How do you decide it's time for a home?

[Mummy's Girl]

Tonight, my 4 brothers and sisters are coming round to discuss my mum's future care. She has deteriorated significantly - incontinant, going out wandering only to be found by strangers, not able to dress herself, in bed at 4pm some days, awake and up at 1am, defecating around the house and most worryingly falling and injuring herself several times a week - the GP is investigating ...and my eldest sister is bearing the brunt as she does not work and goes round every morning to check she is ok and dress her/clean her etc. We all take it in turns to go in the evening (tea time) to give her pills and have a cup of tea with her or take her out for tea. Social servcies go in at lunchtime to make her a meal. We tried a dementia day care centre last week and I posted to say how distressing it was for mum... but the replies have given me some hope.... many thanks.

I see 3 options for us:
1) a nursing home
2) she moves in with one of us (this is NOT likely but one of my siblings may surprise me tonight)
3) extra home care by social services... but my eldest sister keeps resisting this saying mum would hate it, but the 'burden' of care is already showing on her.

Mum simply wants to be at home. We take her to our houses often ... monday, wednesday and friday for tea and all day sunday and she just continually asks to go home or stands up and heads for the door.

At what point do you decide to go for option 1? Those who have done it.... was your loved one aware? I imagined waiting until mum was very confused (she is confused most of the time but still knows us all) but with the response to the day care centre... she just wants to be at home - I suppose it is the only place she feels safe as she can still remember it.

Any advice and support is very very much appreciated

Thank you

 

[Grannie G]

Hi Mummy`s Girl,

Although you and your family are able, between you, to give your mother a lot of care, as well as arranging for SS to give her a lunchtime meal, do you worry about her safety, when you know she is on her own?

This was the deciding factor when my mother went into a home. My mother didn`t seem quite as confused as yours, she could dress herself, used the toilet [just an occasional mishap] and didn`t fall. But she opened the door in any state of undress, left her front and back doors open 24 hours a day, because she could never find her keys, and did not recognize any rooms in her house except her bedroom, kitchen and bathroom.

Do you feel your mother is at risk? If you do, that should help you make the painful decision that she`d be safer in a NH.

All the best, whatever you decide. Love Sylvia x

 

[Canadian Joanne]

My mother was not really aware

She was aware she was somewhere that wasn't home but eventually settled down - after about 2 months of packing her clothes up each & every day in plastic bags. I would come in & unpack her & say she would have to stay a few days longer.

You will feel worse than she will. As Nada says, it sounds like the concept of home for your mother is that place in her mind which doesn't exist. My personal opinion is that people looking for "Home" are looking for a place they recognize and feel safe. Unfortunately Mr. Alzheimer robs them of that security.

My opinion again, it does sound like your mother needs the constant supervision of a nursing home. Again, I think you will feel the devastating emotional effects more than your mother will if you have her admitted to a nursing home. Remember, she needs to be kept safe and if she is wandering, the potential of her wandering out into a street is terrifying. Her physical safety is paramount now. She may well surprise you and adjust very quickly. Even if she doesn't, she will be safe.

Take care. It's a very hard decision.

Joanne

 

[Michael E]

I have a feeling this is perhaps the hardest decision anybody looking after somebody with AD will ever have to make... Certainly scares me rigid... 6 months ago it was unthinkable but now I have started to consider the unthinkable and even visited a few places telling myself it is to find somewhere for Monique to go whilst I have some time off but secretly I am 'sussing' out the future... Scary!

I sort of think there is a point where they are so out of it - like Nada says - it is all in the mind.... I have not seen any modern 'homes' in the UK but the very best I have seen here in France makes me feel it may be an OK solution.. Monique is so lonely - so afraid - so lost - so scared... Now maybe in a well run establishment where all the 'guests' are in a similar situation it may be that they can and do help each other... always somebody around, somebody to touch, somebody to talk to for reassurance.. Nice suitable meals provided in proper quantities, some entertainment and most importantly the opportunity to make some 'friends'...

AD creates an isolation for the sufferers, I have noticed, as much as it does for those looking after them. Worse for the sufferers really - little lasting contact with others......

OK I am putting a 'good gloss' on it but I do wonder if at some point (and its hard to know what point) a home may be a more comfortable, kindly and friendly place to be.... Not sure - really do not know but I think as Nada says once you are looking all the time to 'go home' it may be that 'home is where the mind and body is'... Probably wrong but its worth considering as we all beat ourselves up!

 

[allylee]

Having just reached that point wherby home care is no longer an option, I so symathise with all of you.
With the support of a fantastic carers , day care and assisted technology Ive managed to keep mum at home for a year longer than anyone anticipated.
Having reached the situation where she too wanders at night and is anxious and vulnerable , I have found a lovely residential home for her with a bed at the end of the month.
I imagined I would be feeling a sense relief, what I feel is immense grief and guilt.
Mum will be calmer and safer with the company of others to reassure her 24 hrs a day, but regardless I cant think about the day I have to take her there and leave her.
Love to all of you who have come through this and have yet to face it.
Ally xx

 

[Grandaughter 1]

We faced a similar dilemma with Grandad and the crunch for us was the fact that Grandad simply wasn't safe at home. He was having on average 3 - 6 falls a week with the paramedics being called out.

In the end, after being discharged from one of his many falls he just simply was too weak and frail for Nan to look after so he was taken into emergency respite. He's now in hospital after a fall at the care home although that's another story!

It's a tough decision to make and I wouldn't wish the decision on anyone.

I hope you find a solution that suits your family.

Take Care

Louise x

 

[Mummy's Girl]

Many thanks to you all for your replies.

Nada's view of 'home' is very useful and gives a whole new perspective and one I will definately bring up tonight.
As Sylvia and Joanne point out, she isn't safe and we must consider her safety. Luckily as we live in a small town, we are well known and when she collapsed out one night (8p.m no shoes no key) the lady who found her knew her and drove her round to my sister's house.
and Joanne's perspective on how devastating a home is for us and not necessarily that bad for the loved one is interesting.
Many thanks for your support Michael and sharing your personal experience.

This place is fantastic! Itis now in my tabbed favourites and so I will be popping in daily and will be pointing my family in the direction too. I shall show them your advice tonight! Many thanks again.

Coming out... Karenxxx

 

[alfjess]

I have a feeling this is perhaps the hardest decision anybody looking after somebody with AD will ever have to make... Certainly scares me rigid... 6 months ago it was unthinkable but now I have started to consider the unthinkable ... Scary!

6 months ago I would have said no way are my parents going into care, but now I am thinking like Micheal

Monique is so lonely - so afraid - so lost - so scared... Now maybe in a well run establishment where all the 'guests' are in a similar situation it may be that they can and do help each other... always somebody around, somebody to touch, somebody to talk to for reassurance.. Nice suitable meals provided in proper quantities, some entertainment and most importantly the opportunity to make some 'friends'...

AD creates an isolation for the sufferers, I have noticed, as much as it does for those looking after them. Worse for the sufferers really - little lasting contact with others......

My parents are staying in bed more and more and I think they are bored and lonely and maybe a home would be the best option. Not to mention that my Mum is a danger to my Dad as well as herself.
We provide all meals, but Mum still tries to give Dad food and has come up with some weird concoctions, bath bombs on bread covered with tea from teabags, banana sandwiches sprinkled with tea. Lavender soap on bread. We have removed everything which we think she will try to serve, but she always finds something else. Of course with my Dad also having AD he doesn't know the difference, I am definately considering a care home.
I have come to the conclusion, as much as I do the best I can, I think they would have a better quality of life in 24 hour care. More company, more stimulation and the time I would spend with them would be more enjoyable (for them), because I wouldn't have to worry about what Mum is getting up to, trying to get them to take meds, laundry, bed changing, clothes changing, shaving and a thousand other little things
I think there comes a time, when you have be truthful and think what is better for them and everyone else involved.
Alfjess

 

[alfjess]

Hi
Sorry
I have done the quote thing wrong again, just can't get to grips with it
Alfjess

 

[Lila13]

Whose decision is it? We were told it was up to social workers (who only saw her for about 1 hour in 3 months).

Lila

 

[Conrad]

I think social workers will always leave it to the relatives - up until - the point where it is not in the best intersts of the sufferer to be at home - if they think the rellies are dragging their feet then the SWs will step in

 

[Skye]

I have come to the conclusion, as much as I do the best I can, I think they would have a better quality of life in 24 hour care. More company, more stimulation and the time I would spend with them would be more enjoyable (for them),

Hi Alfjess

It sounds as if you have made up your mind. It makes sense if your mum and dad are a danger to each other. The meals you describe sound horrendous.

IT's not an easy thing to do, but it does sound as if they need 24 hour care. You've don,e your best for them, and now it sounds as if the best for them is care.

Have you found a nice place for them, where they can be together, and you can stop worrying?

Let us know how you get on.

Love