My Mum has Alzheimer's and I need help

[Birchenougn]

My Mum has had Alzheimers for around 6 years diagnosed. She's done really well considering and has only been classed as mild.

More recently she has had a few chest infections, visits to hospital and falls. I thought getting her home again was the best thing for her and still feel it is but she's just changed so much in this short time. Doesn't want to get out of bed, if we do get her up she doesn't want to get washed or dressed, hardly watches TV and says she just tired and wants to sleep, then having a bad night, possibly cause she's sleeping all day. It's like she's given up. I've always been able to talk her round, explain why she has to get up ect. but now she doesn't want to listen to me, getting annoyed very easily, even with her little dog who she loves. I just don't know what to do? The carers can't make her get up and dressed so it's up to me to 'what feels like bullying her to get up and dressed', it's very hard and extremely upsetting.

 

[Starter]

Hello and welcome. It’s sad that you’ve had to find the forum but I hope, like me, you find it invaluable. My mum also spends lots of time in bed and doesn’t want to get washed and dressed. This has gone on for a while and I have come to the conclusion that if she is happy doing this, I’m not going to stop her. I insist (bully) she has a bath once a week and make sure her clothes are clean, but otherwise go along with what she wants.your mum sounds like she’s been through a lot Recently so she maybe worn out. It must be very tiring being confused all the time as well. Try not to get upset about it -easier said than done I know x

 

[YorkshireLass]

My Mum has had Alzheimers for around 6 years diagnosed. She's done really well considering and has only been classed as mild.

More recently she has had a few chest infections, visits to hospital and falls. I thought getting her home again was the best thing for her and still feel it is but she's just changed so much in this short time. Doesn't want to get out of bed, if we do get her up she doesn't want to get washed or dressed, hardly watches TV and says she just tired and wants to sleep, then having a bad night, possibly cause she's sleeping all day. It's like she's given up. I've always been able to talk her round, explain why she has to get up ect. but now she doesn't want to listen to me, getting annoyed very easily, even with her little dog who she loves. I just don't know what to do? The carers can't make her get up and dressed so it's up to me to 'what feels like bullying her to get up and dressed', it's very hard and extremely upsetting.

I struggled to keep mum in the "normal everyday world" for as long as I could whilst she lived at home but eventually I came to the conclusion that I was doing it more for myself than her and I would never be the master of this condition. If she wanted to sleep I let her do just that. Now she is in a care home I do the same sometimes sitting beside her whilst she sleeps. At other times when I arrive she is agitated but after holding her hand for a few minutes she relaxes and goes off to sleep. I don't wake her. Why wake her to be in a world of fear, tears and agitation? Try and make life as comfortable and easy as you possibly can throughout the journey of this appalling disease xxx

 

[father ted]

Your experience is similar to mine.

My Mum has been diagnosed 9 years and has done very well on her meds- Doneprezil.
However in the last year she started to refuse baths and would wash at the sink but then that became irregular.
She always went to the hairdressers regularly but then she stopped having it done and didn't want it washed. Similarly didn't want clothes changed- marks could be sponged off, and she argued she didn't do anything that got her dirty! Din't want her nails cut etc etc. She would be up and down all night.

If I tried to coerce her into doing anything which is in the repertoire of most people's daily routine she would argue and ask 'what's it to you if I do as I please. It's not effecting you but of course by increments it was.
My Mum has recently gone into a care home and she has thrived there and she accepts that getting washed and dressed and eating meals when they are served is part and parcel of her routine now and of course everyone around her is doing the same so she does it too.

Your Mum, like mine has done well to still be as she is after 6 years. There will be changes, that's the nature of the condition. It is hard to see the changes in someone you love but you can only do as much as Mum will tolerate. Does Mum go to daycare. A bit of stimulation from someone other than you may help and be more easily accepted.

 

[Birchenougn]

I struggled to keep mum in the "normal everyday world" for as long as I could whilst she lived at home but eventually I came to the conclusion that I was doing it more for myself than her and I would never be the master of this condition. If she wanted to sleep I let her do just that. Now she is in a care home I do the same sometimes sitting beside her whilst she sleeps. At other times when I arrive she is agitated but after holding her hand for a few minutes she relaxes and goes off to sleep. I don't wake her. Why wake her to be in a world of fear, tears and agitation? Try and make life as comfortable and easy as you possibly can throughout the journey of this appalling disease xxx

Thank you, just worried that she's just wasting away but like you said nothing I can about that, just trying to fix something I can't fix, it's hard x

 

[malcontent2]

My Mum has had Alzheimers for around 6 years diagnosed. She's done really well considering and has only been classed as mild.

More recently she has had a few chest infections, visits to hospital and falls. I thought getting her home again was the best thing for her and still feel it is but she's just changed so much in this short time. Doesn't want to get out of bed, if we do get her up she doesn't want to get washed or dressed, hardly watches TV and says she just tired and wants to sleep, then having a bad night, possibly cause she's sleeping all day. It's like she's given up. I've always been able to talk her round, explain why she has to get up ect. but now she doesn't want to listen to me, getting annoyed very easily, even with her little dog who she loves. I just don't know what to do? The carers can't make her get up and dressed so it's up to me to 'what feels like bullying her to get up and dressed', it's very hard and extremely upsetting.

My

 

[malcontent2]

My

My wife has suffered from this for 7years getting
worse too.
Sleeps after breakfast and after lunch.
Can walk to car but we now use a wheelchair.
Very difficult to climb stairs.
Obtaining quotes for stairlift.
Rarely speaks so no real conversation.
Unable to chew solid meat like beef but we manage
with fruit and vegetables and toasted sandwiches.
Memory very bad and unable to use phone.
I keep a record of toilet visit and provide constipation tablets
after 4 days.
My first post just trying to show i am in sympathy for those with worse problem.

 

[YorkshireLass]

Thank you, just worried that she's just wasting away but like you said nothing I can about that, just trying to fix something I can't fix, it's hard x

So true, we certainly can't fix it. The following might sound awful but it is how I feel. After months of experiencing mum's distress and fear of not knowing what is going on or where she is and many times because of her lack of cognition I cannot calm her at all I am disappointed when the care staff say "well she has eaten all her breakfast and her lunch". I understand that withdrawal from food can signify that the journey is nearing it's end. Apparently not yet for my poor mum. She is 93, blind (since her mid seventies and coped amazingly well then), totally disconnected from conversation, TV, family visits or any social interaction. She currently has no quality of life.I love her dearly and is in a state that I do not want to prolong.

 

[Birchenougn]

Thank you, just worried that she's just wasting away but like you said nothing I can about that, just trying to fix something I can't fix, it's hard x

So true, we certainly can't fix it. The following might sound awful but it is how I feel. After months of experiencing mum's distress and fear of not knowing what is going on or where she is and many times because of her lack of cognition I cannot calm her at all I am disappointed when the care staff say "well she has eaten all her breakfast and her lunch". I understand that withdrawal from food can signify that the journey is nearing it's end. Apparently not yet for my poor mum. She is 93, blind (since her mid seventies and coped amazingly well then), totally disconnected from conversation, TV, family visits or any social interaction. She currently has no quality of life.I love her dearly and is in a state that I do not want to prolong.

Yes that's the hard thing when you want them to experience something that is nice and enjoyable but for them it's not. My mum's not at that stage yes and I'm dreading when she is, she's 82 and doing ok considering but it's still hard. Wishing you all the best for you and your mum x

 

[YorkshireLass]

Yes that's the hard thing when you want them to experience something that is nice and enjoyable but for them it's not. My mum's not at that stage yes and I'm dreading when she is, she's 82 and doing ok considering but it's still hard. Wishing you all the best for you and your mum x

Thank you, live in the moment and don't dwell on the future Mum was calm yet sleepy today, A good visit xx

 

[Tralouise]

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[jcm]

Hi - so sorry to read how difficult things are becoming for you. My mum has been diagnosed a similar amount of time, although we found her mood and motivation to go down hill within a couple of years of the main diagnosis (Mixed dementia - ALZ and Vascular D). Depression can be a common symptom of dementia - I believe the damage to the brain can cause clinical problems in that way, plus of course it's not surprising if the person feels low about the future and their capabilities. However, our doctor did say to us, low mood and depression doesn't just have to be part and parcel of dementia and should be treated in its own right. Have you discussed that possibility with your Mum's doctors? My mum has been on anti depressants for a while now and they have helped her hugely - we have far less episodes of ongoing sadness and tears. She's on a low dose so there's no swinging from chandeliers on them, but I'm convinced they help lift her mood a little - and anything that helps is a good thing. Might be worth exploring if you haven't already

 

[Tralouise]

Mums been in a psychiatric unit 6 months and been ill 9 months. We've been told it's dementia today and have a meeting with doc in 3 weeks to discuss what's next. I have a pit in my stomach, I miss her sooooo much, she was my best friend and as a single parent the future looks bleak and scary without mum by my side. She's been my rock x

Hi - so sorry to read how difficult things are becoming for you. My mum has been diagnosed a similar amount of time, although we found her mood and motivation to go down hill within a couple of years of the main diagnosis (Mixed dementia - ALZ and Vascular D). Depression can be a common symptom of dementia - I believe the damage to the brain can cause clinical problems in that way, plus of course it's not surprising if the person feels low about the future and their capabilities. However, our doctor did say to us, low mood and depression doesn't just have to be part and parcel of dementia and should be treated in its own right. Have you discussed that possibility with your Mum's doctors? My mum has been on anti depressants for a while now and they have helped her hugely - we have far less episodes of ongoing sadness and tears. She's on a low dose so there's no swinging from chandeliers on them, but I'm convinced they help lift her mood a little - and anything that helps is a good thing. Might be worth exploring if you haven't already

Thank you for your response. Mums on anti depressants and her mood has definitely lifted. It's just the anti psychotics that are not working. Is your mum still living at home?

 

[jcm]

Thank you for your response. Mums on anti depressants and her mood has definitely lifted. It's just the anti psychotics that are not working. Is your mum still living at home?

Hi - glad to hear the antidepressants are helping a little. I feel for you, much of what you say is so familiar to me with my Mum. Yes, she's still at home - I've moved in with both my parents to help care for her as Dad can't really manage it alone. We've literally had to put Mum onto antipsychotics in the last couple of weeks too - she hallucinates and sees people in the house that don't exist. It's early days so we're not sure if they will help yet. Has your mum been on them for a while?

 

[Tralouise]

Hi - glad to hear the antidepressants are helping a little. I feel for you, much of what you say is so familiar to me with my Mum. Yes, she's still at home - I've moved in with both my parents to help care for her as Dad can't really manage it alone. We've literally had to put Mum onto antipsychotics in the last couple of weeks too - she hallucinates and sees people in the house that don't exist. It's early days so we're not sure if they will help yet. Has your mum been on them for a while?

Mums been on them around 6 months, they've tried a few different types off anti psychotics but none have really helped and she's upto the maximum dose now and still no improvement. I'm finding it so hard to watch her deteriorate. She accused us off poisioning her one day which was horrendous; but it's so odd she can be psychotic then come out off it 5 minutes later. Are you managing ok at home with Mum? I want to keep mum out off a care home