Alone and struggling

[loulou64]

Is there anyone else who feels as isolated as I do? I'm the sole carer for my 84 year old mum who has just been diagnosed with vascular dementia and parkinsons. On top of that she has recurrent UTIs which make her even more confused, very inaminate and unable to get her words out. She also has very limited mobility and goes off her legs completely with the UTIs. I have no outside carers coming in - the only help I have had recently is from the re-ablement physios as she was in hospital for a month because they thought she'd had a stroke but instead was then diagnosed with dementia and parkinsons. I've also had help from the occupational therapist with equipment for her mobility issues.

I've known for 4 years she's had dementia but never had an official diagnosis until now as the GP kept putting her confusion down to the UTIs. I've been coping ok with the dementia side of things in that she was going to day care 3 times a week for 4 hours a day which gave me a bit of respite, but now with the parkinsons and the UTIs flaring up again as soon as the antibiotics are stopped she's not well enough to go so I'm with her 24/7 unable to go out because I can't leave her on her own. I get about 3 hours sleep at night as she shouts all night and I have to get up and see to her at least 3 times (last night it was 5 times as she wet the bed twice even though she wears incontinence pads). I was so worn out and desperate when I got up this morning I broke down and rang the Samaritans.

I feel so alone - I'm 50, divorced with no kids and gave up my job 4 years ago to look after my mum. I used to have a great social life with loads of friends or so I thought but over the last 4 years they've all disappeared, I'm up to my eyes in debt struggling on the pittance they call carers allowance and the future looks so bleak. It makes things even worse when the only fresh air I've had over the last month is when I put the bins out and when I take mum to the doctors. I'm feeling more and more like a prisoner with the added mental torture of being locked up with someone who is unresponsive apart from shouting "no no no" continuously day and night. And then I feel so guilty for feeling like that...

 

[girlpmac]

Hello. First of all, no guilt! You are amazing, and you love your Mum, and you deserve a life. Contact social services in your area, and with your head held high, ask for a carers assessment. Ask for respite regularly, and ask for support at least one evening a week so you get to begin to restore your social life. I have been in this journey for 6 years. Things have got very difficult in the last twelve months, but I joined a choir. I very slowly began to feel valuable again. I remembered how to smile and you know I was of better support to my mum and dad. You must make sure you have aide when this too passes. I am contemplating giving up my part time job, and looking after my mum full time, but I simply don't know what to do. I got my employer to fund some counselling, but I still haven't made the decision yet??? To finish, you are fantastic, no guilt and ask for help.


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[MeganCat]

I'm so sorry you are feeling so isolated, I really admire your dedication to your mum. I can appreciate you must be utterly exhausted. You are a similar age to me, I'm single too, and it is difficult not having anyone to vent to who knows how horrible this disease is- ie not a charming little bit of forgetfulness - I find TP invaluable for this!

You do need an assessment to determine what support you can get or you will burn yourself out. From what I've read here SS will support a carer to help them to continue to care - but you need to ask for help and be blunt about how close to collapse you are.
You are entitled to a life of your own - don't feel guilty for wanting to catch a breath of fresh air! It will enable you to care better if you invest in yourself.

Take care x

 

[clareglen]

No you're not alone. I too am only child looking after mum with Parkinson's & dementia & a UTI! And she can't be left either now. She swallowed spare cardigan buttons yesterday instead of pills. I live next door & am administering all her pills but I never thought she'd do something like that. I gave up my job too. I slept with her the other night as her meds had seemed to stop working & she couldn't walk or get out of bed to loo. I too got only 3 hours sleep, but I was only prepared to do it one night. Can't imagine how you must feel! With the Parkinson's she is starting with not being able to swallow so Parkinson's tablet not getting far enough down to be absorbed so now forcing her to drink more when taking it. I don't have any carers either but she has been in self funded respite for 2 weeks recently. She goes to daycare 1 day a week for 4 hours (why do they call it DAYcare!). I send her to daycare anyway with a UTI. Daycare is meant to be that, to give us a break. We are paying for the care. Apparently UTI really common with Parkinson's as the muscle to the bladder is affected & doesn't allow the bladder to empty fully causing a UTI. I was tear-ing up today as I was resentful of it being Mother's Day after I'd bathed her, changed her bed, put her washing on, made her dinner, before I started on ours.

Sounds like you need some respite. If she has assets over the limit, £23,500 I think, she'll have to pay for it herself. Hope you have Power of Attorney. Lots of homes round us only do respite if they have a spare bed, but there is one 20miles from us who will do bookable respite. Just tell her it's a holiday. If she is self funding it is simpler to organise booking direct with a residential care home otherwise you'll need to go through Social Services. I found once Social Services realised we were self funding they didn't want to know & closed the case. Just cos mum is self funding I need moral support - useless.

If you are only getting Carer's Allowance for yourself & sound like you don't have savings, with the debt comment, I wonder if you're entitled to some sort of top up. Make yourself an appointment with CAB they will do full benefits check & sort your debts out for you & it's free.

Hope you will feel able to make some improvements & implement some of this. I felt like you last year & was sobbing at the GP saying I wanted to kill my mother. GP replied if you were going to do it you would have done it by now. I still get down but decided I had to force myself to get her to daycare & respite.

 

[Chaucer 1931]

Hello LouLou and everyone,
No,you're not alone in feeling like this,I'm going through more or less the same with my mum,I'm an only child,no other relatives but i have two daughters,the dad isn't in the picture,from day one really,so it's us living in my mums house,with me looking after everyone,on night watch,no carers,nothing.Sleep deprivation is the hardest thing to cope with,I was self employed,but seeing as I have been too busy and worn out/ill to do any work for the last 8 mths,I'm going to have to see about benefits,and also maybe about putting mum into a nursing home,I know me and the kids will end up being forced out of mums home,as the council will want to sell it to pay for her care,all very bleak here too.
I have no friends-well the good sort anyway,to chat to and who don't want to listen to my nightly tales of mopping up and sleeping (ha!) with one eye and two ears open..
If you ever feel like swapping notes and a virtual shoulder to cry on,just message me.im up most nights,
But please do,as what I'm going to do,get some advice and help,it's your sanity and your life as well as your mums,we need time off as well-nurses and paid carers do,so why not us!


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[clareglen]

I know me and the kids will end up being forced out of mums home,as the council will want to sell it to pay for her care,all very bleak here too.

I'm not sure, someone on here more knowledgeable will reply hopefully, but if you're living with the person you care for don't think Council can force you out. They may put a charge on the house for when it is/if it is ever sold but don't think they can force you out.

 

[Wildflower]

Hello loulou, I am an only child and my 88 year old dad lives with me and I am an only child. He has AD and has in the past few weeks had other health problems which mean I've been unable to leave him alone at all. Previously it was ok to leave him for an hour or two.

 

[Wildflower]

Also meant to say I completely understand when you said about getting fresh air when taking the bins out, as I've actually been thinking this myself, and enjoying the freedom of taking the rubbish out! You are not alone xxx

 

[Lindy50]

Hi loulou, Chaucer and everyone

I am not an expert on the treatment of property when / if someone goes into a care home. However, I can point you in the direction of the Age UK fact sheet on this subject.

http://www.ageuk.org.uk/Documents/E...rmanent_care_home_provision_fcs.pdf?dtrk=true

Please see section 3.1, which talks about the council's "discretion to disregard" the property in a financial assessment. If you're over 60 or on disability benefits yourself, you're on fairly firm ground....however the council can still disregard the property if you're fit and younger, if it chooses to.

As clareglen mentioned, there is also the possibility that they put a charge on the house and reclaim their share a a later date when it is sold.

Basically I would say you need expert advice on this. Maybe ring your local Age UK helpline, or discuss with a social worker if / when you have one.

Sorry to hear you're in such a difficult situation. Do ask for help, there is lots out there.

Take care and good luck

Lindy xx

 

[LYN T]

I'm not sure, someone on here more knowledgeable will reply hopefully, but if you're living with the person you care for don't think Council can force you out. They may put a charge on the house for when it is/if it is ever sold but don't think they can force you out.

I'm not sure either but I think that's right. Also as children live in the house I think that's another reason for being able to stay put.

Take care

Lyn T

 

[FifiMo]

If you have given up your home and move in to act as carer for the person with dementia, then the local authority cannot make you homeless in order to sell a property. They can enter into a deferred payment agreement which would allow them to reclaim care home fees at the point that the property is sold. They also have the ability to apply their discresion and exclude the property from their financial assessment. Section 7 (in particular para 7.011 deals specifically with this issue.) See a copy of CRAG (charging for residential accommodation guidance) at the following link: https://www.gov.uk/government/uploa...t_data/file/264477/CRAG_33A_December_2013.pdf

In order to get them to agree either disregard the property or defer payments, it would be helpful if you can demonstrate that you used to live elsewhere. Go check in the library to see if you're listed at your previous address on any public documents. Ask the bank to confirm that they used to correspond with you at your previous address. That type of proof will be useful. In addition it would be helpful if you could argue in terms of timing that your intention for moving in was to provide care and not with the intent of avoiding payment of care home fees. So, consider how you might be able to demonstrate this.

Hope this helps,

Fiona

 

[Owly]

Is there anyone else who feels as isolated as I do? I'm the sole carer for my 84 year old mum who has just been diagnosed with vascular dementia and parkinsons. On top of that she has recurrent UTIs which make her even more confused, very inaminate and unable to get her words out. She also has very limited mobility and goes off her legs completely with the UTIs. I have no outside carers coming in - the only help I have had recently is from the re-ablement physios as she was in hospital for a month because they thought she'd had a stroke but instead was then diagnosed with dementia and parkinsons. I've also had help from the occupational therapist with equipment for her mobility issues.

I've known for 4 years she's had dementia but never had an official diagnosis until now as the GP kept putting her confusion down to the UTIs. I've been coping ok with the dementia side of things in that she was going to day care 3 times a week for 4 hours a day which gave me a bit of respite, but now with the parkinsons and the UTIs flaring up again as soon as the antibiotics are stopped she's not well enough to go so I'm with her 24/7 unable to go out because I can't leave her on her own. I get about 3 hours sleep at night as she shouts all night and I have to get up and see to her at least 3 times (last night it was 5 times as she wet the bed twice even though she wears incontinence pads). I was so worn out and desperate when I got up this morning I broke down and rang the Samaritans.

I feel so alone - I'm 50, divorced with no kids and gave up my job 4 years ago to look after my mum. I used to have a great social life with loads of friends or so I thought but over the last 4 years they've all disappeared, I'm up to my eyes in debt struggling on the pittance they call carers allowance and the future looks so bleak. It makes things even worse when the only fresh air I've had over the last month is when I put the bins out and when I take mum to the doctors. I'm feeling more and more like a prisoner with the added mental torture of being locked up with someone who is unresponsive apart from shouting "no no no" continuously day and night. And then I feel so guilty for feeling like that...

This is completely unsustainable and you are very close to breakdown. No-one can cope day and night as you are doing. Lack of sleep puts you at great risk of mental illness yourself as the brain needs a good 7 hours' sleep (at least) to process and store the day's events.

I think you need to get your GP on your side and tell Social Services that your mother needs to be in full-time care and you cannot look after her any more. Getting respite is not enough IMO, if you then go back to days and nights listening to her shouting and dealing with her incontinence. You should feel no guilt whatsoever for reaching this conclusion and making this decision.

 

[Chaucer 1931]

Thank you everyone for the great advice and links,I will be definitely looking into this and can make some plans,albeit in my head for the time being.I don't want to hijack LouLou's post,so I will start a thread when I have the focus to get my words out right. But yes,LouLou,feelings of isolation and life passing you by and feeling like a prisoner,are so hard to deal with,especially when you are tied to someone who,you loved,could have a normal day with that doesn't revolve around incontinence,which seems like another lifetime ago.
I'm at a loss to give advice out,so much as I'm in the same rut as you,but as I've just joined here and recently found out,that everybody who posts on these boards,we are all there for each other and people do empathise,no matter what the position is, it's a damn sight more than I could find in 'real life'.


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[*dignity]

contact social services

Hi, I am a social worker based in Bristol.

The very first thing you must do is refer your mum to the adult care social services team for an assessment through the council. They will come and visit you and your mum within 4-6 weeks. It is very important that you tell the social worker that you are struggling and they will have a duty to provide support on the basis of risk of carer breakdown.

Please do not worry that they will put your mum in a home, as they should always try supporting her at home first. If your mum does not have saving of over £23,250 then the council will help to pay for the support. The community care assessment carried out by the social worker will determine how much support she needs. It sounds like home care going in daily, plus day centre plus respite would be necessary. The social worker will work with you and your mum to formulate a plan.

You may also need a carer's assessment which is an assessment of your own needs and offers further support to you as a carer. Social services recognise how difficult it is for you to continue your caring role and are here to help.

Please do not hesitate to contact your council as it seems your mum needs to be assessed as soon as possible.

 

[Di Lavers]

Hi like quite a few others I am the only carer for mum. Really feeling my age now 60. I also work from home 9 to 5.30 typing reports. Contacted memory clinic nurse for help as mum can no longer do her knitting, jigsaw etc so gets bored and falls despairing day and then starts walking around at night. I sometimes have trouble getting her back to bed. Now waiting for assessment. Sometimes feel exhausted.

 

[submarine]

me too

My heart goes out to you.
Does Parkinsons Disease preclude the use of anti-biotics?.
My mother is 93 years old and had repeated UTI s for about a year before one of the GP s I went weeping to offered to have her try a very small dose of anti-biotics on an on-going basis. It may be a contentious issue for some but it worked for my mother. The type of anti-biotic is rotated to a different one every 2 months. She has mixed dementia and is very disabled but without the UTI s life is liveable and on a whole other level than with those nightmare UTI s.

You do need to reach out to Social Services. You will be in no fit state to take care of your mother very soon and then they'll have 2 people to take care of. Let them think about that if they try to write you off.

best