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Mum 93 Althzeimers how long can we keep her in her own home

tzavet

Registered User
Feb 23, 2020
12
Hi I’m very new to this site I posted first last Sunday . I’m totally exhausted have autoimmune disease and supporting my daughter and three children , not financially but physically when ican and emotionally . My mum has four care visits a day , she is still able to walk more of a shuffle , it’s too late for her to learn to use a walker she wears pads sometimes soils on the floor as she takes off her pad at night sometimes wets the bed . She has everything done for her now and does very little all day except sit in her chair She reads the newspaper but it’s the same thing over and over .
She repeats but occasionally she will have a fairly normal conversation
. She is allowing the carers to dress and change her usually but not always, she has needed cream on her bottom as she won’t always let them change her and she sits all day . She has the correct support in her chair and can still rise to get up . She is now sometimes getting cross with the carers saying they are bossy . We have one private carer who shops and cleans and is just wonderful , she can only do one long morning a week . She cries when I visit saying she is lonely but forgets quickly.
She is still being taken to a lunch club once a week if the weather is ok but getting her down her long path with steps and into the car won’t be happening much longer , A wheelchair has been discussed with social services but is not an option .
She has stubbornly refused and rejected placements at day care ,and I tried taking her to a care home with daycare , she went with me once I stayed with her the second time she was taken and left , she doesn’t want to go again . I think it’s social anxiety .
. Myself and two sisters have done all we can to keep her at home , she panicked when I took her to daycare at the home said “is this a care home “ she was ok on reassurance and enjoyed her visit because I was with her . When I asked her later if she wanted to go again she had a wicked twinkle and said I don’t think so , she understand I was trying to ease her slowly into care .
I can’t physically or mentally support her anymore . My dermatologist And GP said I have to stop , I’m loosing my hair .am so stressed out , I’ve had ME in the past and worried I could get that again as I’m recovering very slowly from a bad virus
It’s not just her care which the carers can provide there is constant up keep of the bungalow which Is deteriorating , there is now only one door as the other is rotten , we’ve just had new smoke detectors fitted and she has a fall alarm The bungalow needs professional cleaners to make it hygieneic but would upset her too much. She is alone from about 8 when she goes to bed until about 9 with the first care visit . My younger sister and I have LPOA health and welfare , the three of us have financial LPOA . My elder sister does her finances she lives 6 hrs away can no longer visit . My younger sister 4 hours away is working . She tries to do a short weekend visit every 6 ,8 weeks . I live a 40 min drive away .
Sorry this is so long , we just don’t know what to do . She will be so distressed if we have to put her into care and her money will go fast if we get in full time care She is tiny but very strong , I think she’s in stage 6 but probably has vascular dementia as well . Please I need some advice tzavet
 

canary

Registered User
Feb 25, 2014
11,630
South coast
I think the telling phrase is this
I can’t physically or mentally support her anymore . My dermatologist And GP said I have to stop , I’m loosing my hair .am so stressed out , I’ve had ME in the past and worried I could get that again as I’m recovering very slowly from a bad virus
What would happen to your mum if you had another bad bout of ME and could not get up out of bed? Would she be able to survive with just four carers a day.
I suspect that the only reason she has been able to stay at home is because you are plugging the gaps, but its all beginning to disintegrate now.
There comes a time when you have to stop enabling their wants and start implementing their needs.
 

Rosettastone57

Registered User
Oct 27, 2016
1,166
Hi I’m very new to this site I posted first last Sunday . I’m totally exhausted have autoimmune disease and supporting my daughter and three children , not financially but physically when ican and emotionally . My mum has four care visits a day , she is still able to walk more of a shuffle , it’s too late for her to learn to use a walker she wears pads sometimes soils on the floor as she takes off her pad at night sometimes wets the bed . She has everything done for her now and does very little all day except sit in her chair She reads the newspaper but it’s the same thing over and over .
She repeats but occasionally she will have a fairly normal conversation
. She is allowing the carers to dress and change her usually but not always, she has needed cream on her bottom as she won’t always let them change her and she sits all day . She has the correct support in her chair and can still rise to get up . She is now sometimes getting cross with the carers saying they are bossy . We have one private carer who shops and cleans and is just wonderful , she can only do one long morning a week . She cries when I visit saying she is lonely but forgets quickly.
She is still being taken to a lunch club once a week if the weather is ok but getting her down her long path with steps and into the car won’t be happening much longer , A wheelchair has been discussed with social services but is not an option .
She has stubbornly refused and rejected placements at day care ,and I tried taking her to a care home with daycare , she went with me once I stayed with her the second time she was taken and left , she doesn’t want to go again . I think it’s social anxiety .
. Myself and two sisters have done all we can to keep her at home , she panicked when I took her to daycare at the home said “is this a care home “ she was ok on reassurance and enjoyed her visit because I was with her . When I asked her later if she wanted to go again she had a wicked twinkle and said I don’t think so , she understand I was trying to ease her slowly into care .
I can’t physically or mentally support her anymore . My dermatologist And GP said I have to stop , I’m loosing my hair .am so stressed out , I’ve had ME in the past and worried I could get that again as I’m recovering very slowly from a bad virus
It’s not just her care which the carers can provide there is constant up keep of the bungalow which Is deteriorating , there is now only one door as the other is rotten , we’ve just had new smoke detectors fitted and she has a fall alarm The bungalow needs professional cleaners to make it hygieneic but would upset her too much. She is alone from about 8 when she goes to bed until about 9 with the first care visit . My younger sister and I have LPOA health and welfare , the three of us have financial LPOA . My elder sister does her finances she lives 6 hrs away can no longer visit . My younger sister 4 hours away is working . She tries to do a short weekend visit every 6 ,8 weeks . I live a 40 min drive away .
Sorry this is so long , we just don’t know what to do . She will be so distressed if we have to put her into care and her money will go fast if we get in full time care She is tiny but very strong , I think she’s in stage 6 but probably has vascular dementia as well . Please I need some advice tzavet
There comes a point when the person with dementia's needs outweigh what they want to happen . In my opinion you have now reached that point. Your mum needs a whole team looking after her which means full time care. I'm sure this is not what you want to hear, but for your own health and welfare, she needs 24/7 supervision
 

Palerider

Registered User
Aug 9, 2015
1,428
North West
As always a very difficult moment in where to go next @tzavet. I really didn't want to have to place mum into care but in the end the dementia took over to the point where I couldn't assure her safety all well being for the times she had to be left alone.

I dreaded taking her to the CH and leaving her there and felt terrible, she was actually ok and now looking back it was the right time and the right thing to do, because things could not have continued at home, despite my good intentions
 

tzavet

Registered User
Feb 23, 2020
12
I think the telling phrase is this

What would happen to your mum if you had another bad bout of ME and could not get up out of bed? Would she be able to survive with just four carers a day.
I suspect that the only reason she has been able to stay at home is because you are plugging the gaps, but its all beginning to disintegrate now.
There comes a time when you have to stop enabling their wants and start implementing their needs.
 

tzavet

Registered User
Feb 23, 2020
12
Yes you are right , In my heart I know it thank you . I just have to get my sisters onboard too , I know my elder sister is in agreement she is also having problems and says mum is the straw that breaks the camels back , my younger sister not so much ,thinks we can keep her home until she can’t walk
. So to answer that maybe she would like to plug all the gaps . I think we need an assessment to see if she is still capable of making a decision . one of her GPS previously said we have to wait until she can no longer make a decision as to where she needs to be . And when I phoned last week at my wits end another of her practices GPs said they try to keep them at home . Seems her family come last.
 

tzavet

Registered User
Feb 23, 2020
12
Yes you are right , In my heart I know it thank you . I just have to get my sisters onboard too , I know my elder sister is in agreement she is also having problems and says mum is the straw that breaks the camels back , my younger sister not so much ,thinks we can keep her home until she can’t walk
. So to answer that maybe she would like to plug all the gaps . I think we need an assessment to see if she is still capable of making a decision . one of her GPS previously said we have to wait until she can no longer make a decision as to where she needs to be . And when I phoned last week at my wits end another of her practices GPs said they try to keep them at home . Seems her family come last.
Thank you everyone who has posted it’s a relief to be able to share with others who have been through this , It’s helping me to stop my brain going round in circles .
 

canary

Registered User
Feb 25, 2014
11,630
South coast
And when I phoned last week at my wits end another of her practices GPs said they try to keep them at home . Seems her family come last.
Yes, I am sorry to say that you are probably right. Many people have found that the only way is to step back from what they have been doing (as your GP has recommended) and let everything unravel. All the while the gaps are being plugged you will simply be left to get on with it.