Caring for my mum

[Paul G R]

I have been caring for my mother for about 7-8 months, has she was diagnosed with Alzheimer’s in December last year. I have lived with my mum since my dad died 11 years ago, when she was diagnosed they said she could have had Alzheimers for at least 5 years, but the signs might had only been related to her age (my mum is 78 now).
I have a brother who lives about 10 minutes walk away, but he has never bothered, all he said when I told him that my mum was diagnosed was “oh, you have a lot of work to do then”, and then he left.
I have 2 nephews living about 30 miles away (1 of them lives with his girlfriend and they have 4 kids), and they have been helpful when they can, (has my nephews have full time jobs).
Has for my mother she has gotten worse than ever with her Alzheimers, for example she has started to refuse to go to the toilet when she needs to, she does wear protective pads, but doesn’t change them when they need to she just puts another pair on top, she is also peeing and poo-ing in other areas of the house. I ask what she would like for her meals and she pick her meals, but when I have cooked them she won’t eat them so I do her something else and again won’t eat them, she rather eat biscuits.
We do have a career coming in each morning to give her a wash and change her, which helps me a lot, has I am male, and wouldn’t like to wash my own mother (which might be me being selfish). She also calls me names, pulling faces, and swears (which she never use to do).
I have recently contacted the doctors, and a Memory Loss Clinic, about my mother, and she should be due for another assessment soon, and they have said she might be better in a Care Home, and I am beginning to agree with them, has at the moment in the last 2 weeks I have had 3 epileptic seizures, and only sleeping 4-5 hours each day. I am also doing about 4 loads of washing a day, has my mother wets the bed and sofa seats (even though she wears protective pads).
I don’t really want her to go into a care home, but I have to think what’s best for her, and I don’t think I’ll be able to cope with caring for her much longer.
I did have our local Alzheimer’s Society contact me from when my mother was first diagnosed, and the person has been a great help.

thank you for taking time for reading this
Paul

 

[canary]

Wow @Paul G R thats a lot to deal with.

I think that incontinence is often the line in the sand for relatives - you need someone on hand 24/7 to deal with it, clean her up, etc. Having carers is fine, but toileting accidents dont usually happen at convenient times when the carers are around.

I would contact Social Services for a new needs assessment and be very clear that you cannot deal with this.

 

[Pete1]

Hi @Paul G R, welcome to the forum. It sounds like an extremely tough time. It must be difficult to see the changes in Mum's personality too, especially the verbal abuse - I'm sure it is a very painful experience for you.

It was the GP actually saying to me (very sensitively, I may add) after visiting Mum that she would benefit from residential care that made my mind up. He was, of course, correct. There comes a time that visits from carers just simply isn't enough, and I totally understand the difficulty in delivering personal care. I think you know Mum needs to go into a care home, we tend leave it longer than we should as we feel it is against their wishes - but of course 'old' Mum wouldn't have wanted you to be dealing with the issues of 'new' Mum. I hope you can get progress this as it sounds like you need some additional help very soon. All the best - keep posting.

 

[lemonbalm]

That is too much for you to deal with @Paul G R. Most of us assume that it should be family doing all these things but, in fact, professional carers can probably do it all better than we can. It does sound as though residential care is the thing to be considering now.

 

[Paul G R]

Hi everyone, and thanks for your replies,
I have told the career what’s been happening (actually she seen it this morning), she has said that my mother is getting worse dad by day, and she is also getting in contact with her main office to see if they can do any, (our career has just come back from her holiday).


I have decided that it would be best for my mum to go into a care home (actually best for me too), but when it will happen I don’t know, I have contacted the GP, Memory Clinic and Social Worker for help, but they all said they will get back in touch later.

Thanks all of you for your support and advice.
Paul

 

[Paul G R]

UPDATE
Hello again everyone,
I had a visit from a social worker this afternoon, came to see how bad my mother was with her Alzheimers/ dementia, he asked a few questions to her, and to me, he did say about my mother going into a care home for a short time (respite) for a month and after that she will be assessed again after that, but if she hasn’t got any better she will be staying in the care home.
He said I should hear from them again by next Friday, has he will be doing the paperwork and setting a place for my mother in a local care home for her.
In a way I feel unhappy about my mother going to the care home, but I now know that it will be the best think for her, thanks to the people who replied, and some of my relatives.

thanks everyone,
Paul

 

[Helly68]

Paul,
This is always a hard decision to make, but my Mum went into a care home about two years after being diagnosed with mixed dementia. Best thing we ever did.
My Dad had cared for her but was at the end of his tether. They argued all the time with all the other attendant dementia issues. In the home Mummy was able to relax a bit and enjoyed seeing lots of different people, rather than one extremely frazzled carer. I visited regularly before COVID. Sadly, Mummy died recently but I have nothing but praise for the care home. Not everyone settles in easily but you reach a point where 24/7 care is needed and safety outweighs a lot of other issues. It sounds as though you have reached this point.

 

[Paul G R]

Hello again everybody,
Now that I know that my mother is going into a care home, I’m starting to feel guilty, unhappy, and that I have failed my mother.
I know that it’s the best for her, but how do I tell her that she is going in to a care home when the time comes, in the near future. I know she agreed with the social worker to go into the care home, but I don’t think she understand what he was saying.
I know I can go to the care home and visit my mother, but it’s just how I’m feeling it’s heartbreaking, I know that some people might say something to me like ‘grow up’ (my brother would for a start), but they probably don’t know what it is like.

thanks again everyone
Paul

 

[Helly68]

I would say, though this may sound counter-intuitive, don't tell her.
Say she is going somewhere for a rest (others may phrase this better), arrange for her things to be taken separately and then take her for a drive, which happens to end up at the care home.
Sounds wrong, but often trying to reason or tell in advance just makes things worse.
Try to remain calm and positive as much as you can (easier said than done). You may not be able to go into the home with her at the moment, though this sounds harsh, this may help her to settle as homes often suggest a settling in time before relatives visit.
Try to lose the guilt. You have done all you can, the situation is not sustainable and as you say, she is sadly declining. In care homes many PWD relax and their behaviour becomes less challenging because they are safe and have company all the time. This is rarely possible in other settings.
I wish you all the best for this transition. It is hard, but my experience was it got better for everyone once Mummy had care home support.

 

[millalm]

@Paul G R Please know you are not alone in feeling sad, guilty and that you have failed your Mum. It is ironic that in each family there is usually only one child that takes on the responsibility for looking after a parent who is on the dreaded dementia journey, but it is that same child who feels guilty and that they have somehow failed when they have exhausted all of their means to keep their loved one safe and happy. It is an impossible chore to try and safeguard someone who does not understand they are losing their faculties. The fact that her carer is telling you that she is getting worse by the day should give you some comfort in knowing that it is not just you that sees you can't continue on the way things are. I agree with Helly68, don't tell your Mum ahead, just tell her the day of, that you are taking her for a lovely rest. Many women even with dementia retain the need for privacy when it comes to their intimate care and I'm sure your Mum wouldn't want you doing that kind of care for her so you could say she will have ladies who will be able to help her with her personal care 'until she is feeling better'.

Stay Strong, and just know you have made the decision based on what is best for your Mum. You don't want to wait until there is a crisis to act.

 

[canary]

I think that moving someone into a care home is such a huge decision that it always seems to come with a shed load of guilt. Because the person who is being moved is unable to really understand what is happening it feels like deceit, and the general feeling that is in the population (and encouraged by SS) is that people should be cared for by their family, so a care home feels like failure.

All these feeling are, however, wrong. What you are doing is the best thing for your mum. Your mum may well be happier in her care home (mine certainly was) and you will become a son again. Once mum settled in her care home her paranoia went, her old personality returned and she became a whole load of fun to visit. Even if that doesnt happen to your mum, she will be kept safe and looked after.

I agree with everyone else - dont remind her about the care home as she probably wont remember and might refuse to go. When OH went into respite I arranged with the manager that we would have dinner there, which is what I told him. Obviously this particular ploy wouldnt work because of covid, but try and come up with an excuse that you can tell her just before you set off.

 

[Hazara8]

I have been caring for my mother for about 7-8 months, has she was diagnosed with Alzheimer’s in December last year. I have lived with my mum since my dad died 11 years ago, when she was diagnosed they said she could have had Alzheimers for at least 5 years, but the signs might had only been related to her age (my mum is 78 now).
I have a brother who lives about 10 minutes walk away, but he has never bothered, all he said when I told him that my mum was diagnosed was “oh, you have a lot of work to do then”, and then he left.
I have 2 nephews living about 30 miles away (1 of them lives with his girlfriend and they have 4 kids), and they have been helpful when they can, (has my nephews have full time jobs).
Has for my mother she has gotten worse than ever with her Alzheimers, for example she has started to refuse to go to the toilet when she needs to, she does wear protective pads, but doesn’t change them when they need to she just puts another pair on top, she is also peeing and poo-ing in other areas of the house. I ask what she would like for her meals and she pick her meals, but when I have cooked them she won’t eat them so I do her something else and again won’t eat them, she rather eat biscuits.
We do have a career coming in each morning to give her a wash and change her, which helps me a lot, has I am male, and wouldn’t like to wash my own mother (which might be me being selfish). She also calls me names, pulling faces, and swears (which she never use to do).
I have recently contacted the doctors, and a Memory Loss Clinic, about my mother, and she should be due for another assessment soon, and they have said she might be better in a Care Home, and I am beginning to agree with them, has at the moment in the last 2 weeks I have had 3 epileptic seizures, and only sleeping 4-5 hours each day. I am also doing about 4 loads of washing a day, has my mother wets the bed and sofa seats (even though she wears protective pads).
I don’t really want her to go into a care home, but I have to think what’s best for her, and I don’t think I’ll be able to cope with caring for her much longer.
I did have our local Alzheimer’s Society contact me from when my mother was first diagnosed, and the person has been a great help.

thank you for taking time for reading this
Paul

The inevitable move into Care is never easy, despite it being usually both prudent and beneficial to the one who is living with dementia. When you live with someone of course, especially a mother, the notion of delegating care to others seems almost a betrayal. But that is because the bond is so strong that it cannot accept the alternative whatever the situation or challenges placed upon it. But there comes a time when it is impossible to maintain that Care. Not just the physical care but the psychological aspects - hostility, unpredictability and constant changes in mood and so on. The ultimate scenario which results in " emergency " response and rapid transition into Care with the whole miserable business which surrounds it, is something you do not want at all believe me.
The fact that Care seems to be in hand means you should avoid any real trauma. Treat it as normal and the positive thing to do if one wishes for " best interests " over and above the sense of guilt or failure which is not uncommon. Alzheimer's is in itself a huge challenge and dealing with it as it progresses in a home environment is more than enough to cope with, let alone all the daily requisites which are essential and don't adhere to either the clock nor your energy reserves. Everyone is different, but when you know someone intimately like your own mother it helps in as much as you know the likes dislikes and the " history " of that person and this invaluable when it comes to a proper 'care plan'. Because Alzheimer's affects short term memory in a significant way, it is therefore wise to act accordingly and not communicate any "changes " in one's mood, accepting that you might be feeling highly emotional about the transition into Care. If the Care Home is good that alone removes much angst because one knows that the continuity of care is in place and disciplined so as to address the person and to do so with both dignity and respect which are paramount. Then visits can prove to be less fraught than before and when " settlement " comes about those visits can realise genuine affinity and even moments of joy. Every single story on here holds equivalency. We share similarity of events and recognition of like behaviours. Some accounts beggar belief in as much as they render the reader aghast as to the level of dedication and durability of an individual against all odds and often at their own expense health wise. And the overriding factor lies in the truth of a condition which cannot be denied nor challenged, only respected fundamentally and with constant awareness , because it inhabits a loved one who remains completely innocent, who never sought the journey ahead and who -- despite all the stresses and demands put upon their Carer -- can never return. In all of this we offer compassion, empathy and an understanding which makes us both humble and vulnerable. And we strive to do this because the one we love and care for, might be us.

 

[DesperateofDevon]

I have been caring for my mother for about 7-8 months, has she was diagnosed with Alzheimer’s in December last year. I have lived with my mum since my dad died 11 years ago, when she was diagnosed they said she could have had Alzheimers for at least 5 years, but the signs might had only been related to her age (my mum is 78 now).
I have a brother who lives about 10 minutes walk away, but he has never bothered, all he said when I told him that my mum was diagnosed was “oh, you have a lot of work to do then”, and then he left.
I have 2 nephews living about 30 miles away (1 of them lives with his girlfriend and they have 4 kids), and they have been helpful when they can, (has my nephews have full time jobs).
Has for my mother she has gotten worse than ever with her Alzheimers, for example she has started to refuse to go to the toilet when she needs to, she does wear protective pads, but doesn’t change them when they need to she just puts another pair on top, she is also peeing and poo-ing in other areas of the house. I ask what she would like for her meals and she pick her meals, but when I have cooked them she won’t eat them so I do her something else and again won’t eat them, she rather eat biscuits.
We do have a career coming in each morning to give her a wash and change her, which helps me a lot, has I am male, and wouldn’t like to wash my own mother (which might be me being selfish). She also calls me names, pulling faces, and swears (which she never use to do).
I have recently contacted the doctors, and a Memory Loss Clinic, about my mother, and she should be due for another assessment soon, and they have said she might be better in a Care Home, and I am beginning to agree with them, has at the moment in the last 2 weeks I have had 3 epileptic seizures, and only sleeping 4-5 hours each day. I am also doing about 4 loads of washing a day, has my mother wets the bed and sofa seats (even though she wears protective pads).
I don’t really want her to go into a care home, but I have to think what’s best for her, and I don’t think I’ll be able to cope with caring for her much longer.
I did have our local Alzheimer’s Society contact me from when my mother was first diagnosed, and the person has been a great help.

thank you for taking time for reading this
Paul

Wow i think you have been amazing in what you have done so far , but your own health must now come first.
Sadly it doesn't get any easier Paul, your Mums needs are greater than you can now provide - please ring Adult Social Care asap. new needs assessment are required asap.
Also you can contact the mental health team & ask for urgent assessment
good luck
don't feel guilty as you cannot keep your Mum safe 24/7 & not impact on your own health
x

 

[Paul G R]

UPDATE
Hiya everyone,
I just thought that I tell you all, that my mum has now gone into a care home for short term (respite) 4 weeks, if she gets any better she could come back home, but I’m not sure if I want to go back through all the pressure of being her career again.
the care home is only 2.5 miles away, and easy to get too. The rating for the care home is 4/5 and is open 24 hours for visitors, the bad part is that my mum has had to go into self isolation for 14 days, but her room has a window and talk to her through that.
I still feel saddened and guilty, but I know that a person can only do so much, and I do have to look after myself as well.

Thank you all for your support.
Paul

 

[Izzy]

I’m glad you have somewhere you’re happy with for your mum @Paul G R. I hope all goes well with the respite and with the decisions you take for the future.

 

[DesperateofDevon]

Ah @Paul G R, it's a difficult situation to find yourself in ? baby steps for you , take time to actually breathe & relax . Please don't feel guilty - it's an illness & you can't solve or cure the issues it presents x

 

[Paul G R]

ANOTHER UPDATE

I was caring my mum who had Alzheimer’s, I have an older brother, who lives 10mins walk from us, all he said was that I had a lot of caring to do, I haven’t had any contact from him for the last 10 months.
With my mum, I thought I would able to cope with caring for my mother but with her Alzheimers it kept getting worse, she kept peeing herself, and refused to use the toilet.
I had 1 career coming in every Morning to wash and clean her. A few months ago she started to strip herself naked, and sometimes go to a window (naked) a wave to people, this was usually when I was somewhere else in the house (like when I was having a wash and shave).
I use to ask her what she wanted for her meals, and when I had them ready she would refuse to eat them. Also she infrequently slept, so I didn’t sleep a lot (about 3-4 hours a day), it caused me to have epileptic seizures. Also taking care of my mother had stopped me from going out, and also I have lost most of my friends (so were they really friends), so I had a social worker to give her an assessment, a few days after the assessment the social worker said about a care home on respite (4 weeks), at the moment she is still at the care home, but she has got use to the care home, she doesn’t strip herself, she sleeps better, the only thing is that she still doesn’t eat much. My mother is also interacting with the other patients and careers/nurses. I do miss my mother (as the care home, not excepting visitors, due to the Covid-19), but I am thinking about would it be worth it to have her back home, or leave her at the care home, as I’m not a professional career, and I’d be here alone looking after my mum, and there is about 10-15 careers there all the time. Another thing is if I decide to have her back home, am I just thinking about myself, and she might go back to how she was, if I decide for her to stay in the care home, i would know that she was properly taken care of, and safe, but some of the rest of the family (some of my nephews) doesn’t like the sound of their Nan being left in a care home.

So my big decision is what is best -
A) my mums health and safety (and keep her at the care home)
B) myself, (and looking after my mum back home)
C) family, (but my nephews live 40 miles away, and have jobs and their own families)

At the moment I’m think my decision will be A), and keep her at the care home, even though I miss my mother being here, and it makes me feel upset and depressed, I think it is best for her.
I love my nephews (even though they are adults), and they might not like, what my decision is, but do they know what it is like from my point.

Thanks everyone
Paul

 

[Betty65]

ANOTHER UPDATE

I was caring my mum who had Alzheimer’s, I have an older brother, who lives 10mins walk from us, all he said was that I had a lot of caring to do, I haven’t had any contact from him for the last 10 months.
With my mum, I thought I would able to cope with caring for my mother but with her Alzheimers it kept getting worse, she kept peeing herself, and refused to use the toilet.
I had 1 career coming in every Morning to wash and clean her. A few months ago she started to strip herself naked, and sometimes go to a window (naked) a wave to people, this was usually when I was somewhere else in the house (like when I was having a wash and shave).
I use to ask her what she wanted for her meals, and when I had them ready she would refuse to eat them. Also she infrequently slept, so I didn’t sleep a lot (about 3-4 hours a day), it caused me to have epileptic seizures. Also taking care of my mother had stopped me from going out, and also I have lost most of my friends (so were they really friends), so I had a social worker to give her an assessment, a few days after the assessment the social worker said about a care home on respite (4 weeks), at the moment she is still at the care home, but she has got use to the care home, she doesn’t strip herself, she sleeps better, the only thing is that she still doesn’t eat much. My mother is also interacting with the other patients and careers/nurses. I do miss my mother (as the care home, not excepting visitors, due to the Covid-19), but I am thinking about would it be worth it to have her back home, or leave her at the care home, as I’m not a professional career, and I’d be here alone looking after my mum, and there is about 10-15 careers there all the time. Another thing is if I decide to have her back home, am I just thinking about myself, and she might go back to how she was, if I decide for her to stay in the care home, i would know that she was properly taken care of, and safe, but some of the rest of the family (some of my nephews) doesn’t like the sound of their Nan being left in a care home.

So my big decision is what is best -
A) my mums health and safety (and keep her at the care home)
B) myself, (and looking after my mum back home)
C) family, (but my nephews live 40 miles away, and have jobs and their own families)

At the moment I’m think my decision will be A), and keep her at the care home, even though I miss my mother being here, and it makes me feel upset and depressed, I think it is best for her.
I love my nephews (even though they are adults), and they might not like, what my decision is, but do they know what it is like from my point.

Thanks everyone
Paul

- A - definitely.
you And your nephews have your own life now. Your Mum is being Looked after in her lovely 5 star hotel. She can socialise,have all her food cooked (even if she doesn’t eat much- this is nature kicking in), she can watch tv, chat, get her hair done, have showers and be cleaned when needed by professionals. You should feel no guilt - you have gone beyond what any other son might do. Enjoy your visits but its time for you now

 

[canary]

The only reason that your mum seems to have improved is because she has a whole team of people looking after her round the clock.

If she came back home, within a very short time she would be back to the same as she was before.

She is settled now and content. I really dont think it would be fair on her to uproot her yet again.

If you take her out and it doesnt work out you may have lost her room and have to start right from scratch again.

The nephews may not be happy, but they were not involved in her care and have no idea what it takes to look after her, so their views do not count IMO

 

[Bunpoots]

I agree with @canary - people who didn’t see your mum day to day have no idea what it was like. She has improved because she is in a carehome, looked after by professionals. Bringing her home would be a mistake which is what you understand but others do not.