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Taking care of my mother who is caring for her mother with Dementia

AnnaMariaV

New member
May 17, 2022
5
0
Hi,

I came to seek for help and advice.

I am a 25 y.o living in Manchester and I visit my family in Cambridge every 2 months. I have a single mother who currently lives with my grandma with dementia. They live in the same house. My mom moved in last November, originally taking care of my grandma and granddad but sadly my granddad passed away. My mom only recently (2 months now) hired a day and night carer for my grandma but it's not 24hour care. The time my granddad passed away, my mom has been taking care of my grandma alone and finally reached her breaking point long ago. I think my grandma is stage 6(?) -- she forgets things even after telling her, she doesn't recognise anyone apart from my mom (sometimes), she calls out for my granddad but she forgot who he is, she can walk a bit but is in a wheelchair, she can talk, read a bit but she has forgotten how to write, she has bowel problems (she poops and pees everywhere) and lastly she can get really confused and scared.

Anyway, I'm writing this more about my mom who is disabled and also has an illness herself. It can get worse if she is in a lot of stress. She has already reached her limit with my grandma, shouting at her and it's going on everyday. It looks like she's coming to a point where maybe she hates her. Even if we have carers, the time between when the carers are not here my mom has to take care of my grandma and it frustrates her because she's fed up. I always tell her that "we can't do anything because it's the dementia that's controlling her" but my mom has already given up... I mean, with the symptoms she has I can see why my mom has given up, having to look after and clean up my grandma everyday without any help... And yes, she has siblings but they are USELESS. I always help when I visit, taking care both my mom and my grandma.

I'm still young, moving on with life but I am worried about my mom. I think one day her illness will come back and I've seen what it does to her. I was thinking of moving near Cambridge temporarily only to take care of my mother or (as one of the carer advised me) hire a carer for my mom. My mom knows I have my own life and doesn't want me to worry about her but I do. Thankfully I have a partner who is understanding and my workplace allows remote work, so at this point I don't know whether to move back to Cambridge, hire a carer for my mom or maybe my mom could hire another carer that can fill in the gap between when the day and nigh carers are not around?

Looking forward to any advice, thanks!
 
Last edited:

canary

Registered User
Feb 25, 2014
18,427
0
South coast
Hello @AnnaMariaV and welcome to Talking Point

Basically, your grandma needs a care home now. All of this is too much - even for live in care and if you can afford live in care, you can certainly afford a care home. What is stopping you going down this route?
 

AnnaMariaV

New member
May 17, 2022
5
0
Hello @AnnaMariaV and welcome to Talking Point

Basically, your grandma needs a care home now. All of this is too much - even for live in care and if you can afford live in care, you can certainly afford a care home. What is stopping you going down this route?
Hi @canary ,

That's a good question and should have mentioned it in my post. Apparently the reason is that the homes are too expensive and most don't treat their patients well?!? Honestly I have mentioned this to my mom several times and she always says "you're right, I'm going to look into it" or "you're right, I'll have a talk with my brothers" but the answer is always the same. The carers that were hired are at minimum wage -- both £13 an hour (day time 10am - 6pm, night time 9pm - 5am) whereas other private carers would charge £20+ per hour... I 100% agree with taking my grandma to a care home but at this point I have also given up telling them
 

MartinWL

Registered User
Jun 12, 2020
2,029
0
65
London
Keep telling them loudly. @canary is right, your grandma needs a care home for her benefit and for your mother's health and welfare. Care homes vary and most of them do look after residents well.

By my rough calculations you are already paying more for care than a care home would cost, you can get a care home for around £4500 a month.
 

canary

Registered User
Feb 25, 2014
18,427
0
South coast
I think this is a problem with perception of care homes. In the general population a care home is seen as failure, but it is not - it is getting the person with dementia the help they need. Where is the dignity in your grandma having developed incontinence and being scared all the time? There are very few homes that treat their residents badly and the vast majority are good with truly caring staff. The home mum was in was not at the higher end of the market, but the care was wonderful. When mum finally passed away (in her care home, tended by people she knew) several of the staff came to her funeral. She once said to me "everyone in here loves me" and she was right, they did.

If your mum cannot be persuaded then, unfortunately it will take a crisis before something happens - usually if either the carer (your mum) or the person with dementia( your grandma) end up in hospital. Its far better, though, if the transition can be managed. I suspect that your mum is so caught up in trying to get through every day that she no longer has the time or energy to look for a care home. Is this something that you could do? Check out care homes in your grandmas area, talk to the managers and be brutally honest about what your grandma is like - not all care homes accept the same type of residents and you will need somewhere that can deal with the later stages of dementia. At the very least - get your grandma referred to a bladder and bowel clinic to deal with the incontinence.

Please do not get "sucked into" caring for your grandma - you will end up caring for both your grandma and your mum and have literally no life of your own.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,836
0
Nottinghamshire
Don't put your own life on hold @AnnaMariaV by moving cities to care for your grandma, but you can do practical things from a distance. For instance use this website Care Home UK to find a short list of homes that you think might suit Not all homes are the same and what is great for one person wouldn't be for another.
 

AnnaMariaV

New member
May 17, 2022
5
0
Keep telling them loudly. @canary is right, your grandma needs a care home for her benefit and for your mother's health and welfare. Care homes vary and most of them do look after residents well.

By my rough calculations you are already paying more for care than a care home would cost, you can get a care home for around £4500 a month.

I think this is a problem with perception of care homes. In the general population a care home is seen as failure, but it is not - it is getting the person with dementia the help they need. Where is the dignity in your grandma having developed incontinence and being scared all the time? There are very few homes that treat their residents badly and the vast majority are good with truly caring staff. The home mum was in was not at the higher end of the market, but the care was wonderful. When mum finally passed away (in her care home, tended by people she knew) several of the staff came to her funeral. She once said to me "everyone in here loves me" and she was right, they did.

If your mum cannot be persuaded then, unfortunately it will take a crisis before something happens - usually if either the carer (your mum) or the person with dementia( your grandma) end up in hospital. Its far better, though, if the transition can be managed. I suspect that your mum is so caught up in trying to get through every day that she no longer has the time or energy to look for a care home. Is this something that you could do? Check out care homes in your grandmas area, talk to the managers and be brutally honest about what your grandma is like - not all care homes accept the same type of residents and you will need somewhere that can deal with the later stages of dementia. At the very least - get your grandma referred to a bladder and bowel clinic to deal with the incontinence.

Please do not get "sucked into" caring for your grandma - you will end up caring for both your grandma and your mum and have literally no life of your own.
I've literally just spoken to my mom before reading your comments. She mentioned that the cheaper homes (probably homes that are £4500) don't treat their patients well and the better ones are around £10,000 which they can't afford... Yes she is so caught up taking care of my grandma as well as being stressed that she probably didn't research properly and only relied on what one or two people said. My uncles are useless so no point asking them.

I have to agree that I'll probably need to research about this myself. I was hoping my mom and my uncles would do it... And unfortunately I also agree that probably the only way that they could be persuaded is if my grandma or my mom ended up in hospital.

As for the bowel problems, we have taken my grandma to see the doctor ages ago and the solution is to have (I think) an ostomy but with my grandma having dementia, she will most likely pull the sack. She is also unpredictable during surgery and now that she's getting older, anything could happen. So for now we are using diapers but even that doesn't help.
 

AnnaMariaV

New member
May 17, 2022
5
0
@Sarasa Thanks for the link! I really don't want to put my life on hold but I am worried about my mom. This is why I'm seeking advice because I really don't know what to do
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,321
0
Nottinghamshire
Hi @AnnaMariaV

I'd just like to reiterate what @canary has said. My dad was in a cheap carehome and, although it was dated and I wouldn't have chosen it, he received wonderful care. It was like having a second family and my dad settled quite quickly. He was also incontinent at home but, once in the carehome, they managed him so well he seldom had an accident. He certainly had much more dignity than he had at home!

I think if you can persuade your mum to give it a go (maybe a few weeks respite for your grandma) she may be pleasantly surprised
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,190
0
High Peak
I think you need to look at the rules on funding. Only your grandma's money is counted in an assessment, not your mum's. The property would probably be disregarded. And as has been pointed out, you are already paying out a lot for carers. Who is paying for this? Does your mother have Power of Attorney for your grandma?

Your mother says cheap homes don't look after people well - how on earth does she know this? She is merely expressing her fears and these are incorrect! If your mum is shouting at your grandma, that's not good for anyone. She has clearly reached 'carer breakdown'. Care homes have a team of trained staff - they are used to caring for people with dementia and they are good at it. They work shifts so they are not completely exhausted and burned out as your mum is.

Sort out the finances first and make sure you know who will be funding the care, either your gran or SS. Check out care homes. Really the only thing that will help your mum is if your gran moves into care.
 

Banjomansmate

Registered User
Jan 13, 2019
4,075
0
Dorset
You say your Mum moved in with her parents last year, does she still have her own home to go back to?
Does your grandmother own her home now grandfather has died? Does she have any savings? Has grandfather’s estate been granted probate so that all finances are known?
Has anybody applied for Attendance Allowance for grandmother to help pay for care?
Does anybody have Lasting Power of Attorney for grandmother? If not and she has capacity to grant it that is the first thing you need to get organised otherwise someone will have to apply for Deputyship to deal with her finances.
If the home is rented and savings are below ?£23,000 (I’m out of date with current figures) then you need to get Social Services involved to assess grandmother’s needs. It may well be that your Mum has to return to her own home and leave grandmother to the tender mercies of the carers for the Local Authority to decide she is no longer safe at home and they decide resident care is necessary.
Sorry but these are just some of the things to get straight before making any decisions. If your Mum can go home and your grandparents’ property can be sold then the money is there for residential care for your grandmother but LPA or Deputyship needs to be organised.
 

MartinWL

Registered User
Jun 12, 2020
2,029
0
65
London
I've literally just spoken to my mom before reading your comments. She mentioned that the cheaper homes (probably homes that are £4500) don't treat their patients well and the better ones are around £10,000 which they can't afford... Yes she is so caught up taking care of my grandma as well as being stressed that she probably didn't research properly and only relied on what one or two people said. My uncles are useless so no point asking them.

I have to agree that I'll probably need to research about this myself. I was hoping my mom and my uncles would do it... And unfortunately I also agree that probably the only way that they could be persuaded is if my grandma or my mom ended up in hospital.

As for the bowel problems, we have taken my grandma to see the doctor ages ago and the solution is to have (I think) an ostomy but with my grandma having dementia, she will most likely pull the sack. She is also unpredictable during surgery and now that she's getting older, anything could happen. So for now we are using diapers but even that doesn't help.
My mother's care home was under £1000 a week and although it was not particularly luxurious, the care provided was very good and I never once had a cause for complaint.
 

Carerin20s

New member
Jan 1, 2022
7
0
Hi @AnnaMariaV

Sorry to hear about your situation, but with everything you've mentioned it does perhaps sound like you, your Mum and your Grandma might benefit from a care home. I can't speak to the finances, but I can imagine how difficult it must be for your Mum, and I can wholly understand how the stress can lead to immense frustration and further health impacts.

With regards to your own dilemma, it sounds as if you already know you don't think you could commit to becoming a full time unpaid carer. I'm 28 and I've spent 18 months in earnest caring for my own Mum full time and it's a very jarring, lonely position to be at this point in life, not one that I would encourage other young adults into tbh. You can still provide a lot of assistance by keeping in touch regularly and doing your best with some of the life admin.
 

jennifer1967

Registered User
Mar 15, 2020
11,676
0
Southampton
my youngest daughter is 28 just and she does all her dads meds and putting in dosset boxes where she works in a pharmacy. my husband is 74 so had her when he was older. i do the caring and she will help out when asked. so could help out even one thing to take off your mums hands but i wouldnt want my daughter to be sucked in to caring. she has 2 young children, job and partner and i would rather she had a life of her own.
 

AnnaMariaV

New member
May 17, 2022
5
0
Thanks everyone for your reply and advice! I really appreciate it!

Just gona answer a bit of the questions above. My mom has power of attorney so she handles the money for both my grandma and granddads account. She has her own house but currently lives with my grandma. She takes care of her during the times when the carers are not around however she does go out most of the time for fresh air. My grandma officially owns the house since my granddad died and has savings too. To my knowledge they don't want to sell the property because they want to inherit the funds which I think is quite annoying. Clearly my grandma needs special care 🙄 Past few days I have been talking to my mom about it but so far she chose to take classes on how to deal with someone with dementia. IDK why they're very reluctant to take my grandma to a home. I'll see how it goes this month but if nothing has changed I'll probably have to step in...

Other than that, I appreciate those who have replied that are somewhat the same age as me experiencing the same thing. It gives me a relief that im not the only one experiencing this. For me, I would only change cities IF needed because I always keep in mind that my mom and grandma only lives once.