Care home or not?

[Nat-ash-a]

My mum has moderate dementia. She lived with her partner until last week when he suffered a stroke, as mum was unable to get help we are not sure how long he had been left there and as a result had a major bleed on the brain and is currently in ICU.

Obviously looking after mum was testing for him, he was self employed and not doing much work as he had to nearby for mum. Unfortunately as he was worried his home would be taken from him to pay for care he didn't tell any of us how bad mum had got and got into quite a lot of debt unbeknown to us until now. He's doing well but will never be able to care for mum in the future.

Mum can't be alone at all so I have two options:
1. She goes into a home, i have no decent homes near me and will struggle to find one where I do not pay a top up. But it will allow me to work and take the stress away although I feel like I'm signing a death warrant as she will definitely decline, she has bad OCD and gets upset if her routine is out.
2. She moves in with me and my family. She will still suffer as her routing and surrounding will be different but I won't feel as bad about it. I can turn my dining room into a bedroom but we only have an upstairs bathroom so this will cause problems at a later date. I work so my mum would need to go to day centres each day, family have offered but previous experience shows they will let me down. They have already.

So basically I feel I should move her in with me because she nursed both my grandparents and gave up her job but she got benefits to help and could leave them in the house alone for an hour or so as they did not walk (I know this wouldn't be acceptable now, it was a long time ago) . Mum needs to be watched constantly and get upset regularly, she has been known to grab my 7 year old and shove her about when she can't find the right words and my husband is really worried about it. Also she would need to go into day centres each day.

It would kill me to put her in a home, financially and physically but I feel if she went into the home but it will be a hard day but once it would be done that would be it. I'm looking round some tomorrow but from what I've seen on the Internet that are all so dated and sad looking. I always promised I wouldn't put her in a home but sending her to a day centre every day seems worse. At least in a home she will have her own room and can sit alone if she wants and watch re-runs of soaps which makes her happy yet going to a day centre she will be forced to sit with people much older and advanced than her (she is only 68) and I worry she will resent me more because I will have to fight with her every day to get her to go and she will probably make life hell for me and my family when she gets back.

Writing this I think I've made my mind up but I just don't know if I can do it. Will she ever forgive me?

 

[Bunpoots]

Welcome to Dementia Talking Point @Nat-ash-a

I couldn’t have had my dad live with me either. It would’ve been very unfair to my kids, especially my eldest daughter who he took against.
I fought to keep dad out of a carehome but once once he’d settled he was happier than he had been in his own home and much much safer.

Dad’s carehome was not what I’d have chosen for him. It was dated and dingy looking in places but dad didn’t seem to mind. The important thing is the staff were excellent and the turnover low. The manager was approachable and knowledgeable about dementia and willing to go the extra mile to find individual solutions for the residents behaviours. Dad was encouraged to join in with activities but allowed to sit in his room if that was what he wanted.

Also, importantly for me there was no top-up.

when you look at carehomes be honest about your mum’s behaviours and ask what behaviours they won’t accept. Dad’s coped with wandering, aggression and incontinence and still managed to keep a calm and happy atmosphere.

Decor is really not the most important thing. I’d dreaded dad going into a home but realised, once he’d settled, that I should have done it sooner.

 

[karaokePete]

Hello @Nat-ash-a, welcome to the forum from me too. I hope you find this a friendly and supportive place.

You will find lots of information, including details on some of the issues you have raised, in the AS Publication list that you can find with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

These links will take you to 2 specific factsheets that may assist you
https://www.alzheimers.org.uk/sites...assessment_for_care_in_support_in_england.pdf

https://www.alzheimers.org.uk/sites...downloads/factsheet_selecting_a_care_home.pdf

The following link will take you to a site where a postcode search for CH's can be done. The facilities are listed and some have reviews(can't vouch for these). This may assist you in your search
https://www.carehome.co.uk/

 

[Sarasa]

@Nat-ash-a , I'm so sorry that you find yourself in this situation, and I hope your mother's partner makes a good recovery, but as you say he won't be able to care for her in the future.
I think a care home is your only option, both for you and your mum (and remember you and your family are equally important). Your mum is the best she will ever be at the moment and she could soon find getting up stairs to the bathroom, tricky. I'm also worried about the effect on your daughter. A home will give your mum routine, and stability, and though some might look shabby, care is more important than looks.

 

[canary]

Hello @Nat-ash-a ,Im so sorry to hear about your dad and even more sorry to hear about the reason that he became so ill.
From what you have said I dont think you would be able to look after her yourself, either at your home or hers. I think your husband is right to be concerned about the safety of your 7 year old.

Try and look past the decor when you visit care homes. The place that mum was in looked shabby and dated, but the care was wonderful and they looked after mum right up to the end. Many of the places that look like 5* hotels only want the early, easy stages of dementia and then once they get to a certain stage will give notice. Also be very wary about taking on a third-party top-up. They can go up to eye-watering levels very quickly.

Moving into a care home will not necessarily be the end of your mum. My mum fought hard not to go, but eventually (like your mum ) there was no choice and I was therefore surprised when mum not only settled, but thrived. She liked the routine of the care home, the fact that no demands were made of her and that there was always someone around (day and night) to reassure her. She joined in the activities (I never thought she would do that), made friends and was content.

 

[jugglingmum]

she has been known to grab my 7 year old and shove her about when she can't find the right words and my husband is really worried about it.

This answers your question. You don't have an option.

My youngest was 8 when my mum stayed with us for 3 months whilst I found her somewhere to live, she was not at the stage your mum is but she continually criticised my 8 year old for what she perceived as bad behaviour and we had to create ways to deflect this - meal times were the worst as she criticised his eating habits (he is dyslexic and still hadn't fully mastered a knife and fork at that stage).

You may find the routine of a care home really suits her, just like young children PWD need a routine.

The LA have to offer you at least one home that meets your mother's needs and doesn't require a top up.

Don't worry about your mum's age - it is the stage her dementia is at which matters.

 

[Nat-ash-a]

Thanks so much all of you, i can't tell you all how reassuring your words are. Also I feel like I know what is important and what questions to ask tomorrow.

They have offered me just one that has no top up but it isn't ensuite (picky I know) and is too far for my step-dad to travel if/when he's able as he won't be able to drive. It's only 20 miles but on a bus it will be two busses and two hours each way. I will take him but I imagine he will want to go during the day while everyone is working.

Thanks again for your replies x

 

[Naomi25]

My mum has moderate dementia. She lived with her partner until last week when he suffered a stroke, as mum was unable to get help we are not sure how long he had been left there and as a result had a major bleed on the brain and is currently in ICU.

Obviously looking after mum was testing for him, he was self employed and not doing much work as he had to nearby for mum. Unfortunately as he was worried his home would be taken from him to pay for care he didn't tell any of us how bad mum had got and got into quite a lot of debt unbeknown to us until now. He's doing well but will never be able to care for mum in the future.

Mum can't be alone at all so I have two options:
1. She goes into a home, i have no decent homes near me and will struggle to find one where I do not pay a top up. But it will allow me to work and take the stress away although I feel like I'm signing a death warrant as she will definitely decline, she has bad OCD and gets upset if her routine is out.
2. She moves in with me and my family. She will still suffer as her routing and surrounding will be different but I won't feel as bad about it. I can turn my dining room into a bedroom but we only have an upstairs bathroom so this will cause problems at a later date. I work so my mum would need to go to day centres each day, family have offered but previous experience shows they will let me down. They have already.

So basically I feel I should move her in with me because she nursed both my grandparents and gave up her job but she got benefits to help and could leave them in the house alone for an hour or so as they did not walk (I know this wouldn't be acceptable now, it was a long time ago) . Mum needs to be watched constantly and get upset regularly, she has been known to grab my 7 year old and shove her about when she can't find the right words and my husband is really worried about it. Also she would need to go into day centres each day.

It would kill me to put her in a home, financially and physically but I feel if she went into the home but it will be a hard day but once it would be done that would be it. I'm looking round some tomorrow but from what I've seen on the Internet that are all so dated and sad looking. I always promised I wouldn't put her in a home but sending her to a day centre every day seems worse. At least in a home she will have her own room and can sit alone if she wants and watch re-runs of soaps which makes her happy yet going to a day centre she will be forced to sit with people much older and advanced than her (she is only 68) and I worry she will resent me more because I will have to fight with her every day to get her to go and she will probably make life hell for me and my family when she gets back.

Writing this I think I've made my mind up but I just don't know if I can do it. Will she ever forgive me?

hello,

sounds like a really difficult situation. I can only speak from my own experience as my father went into a care home after 5 week stint in hospital as my mum wasnt coping with him at home and the 4 15 min visits from carers just wasn’t enough.

social services did a financial assessment and then gave me three options for care homes about 40 mins from where we live. I visited and decided on one which he moved into last week.

I am so happy I did that, I feel like he is in safe and good hands and we actually pay less for him than we did when he had the 4 times a day visits!

however it really does depend on circumstances and your own personality. I would have had a mental breakdown having my dad in my own home. He lived with my mum and they had no mortgage left to pay off. He had a good pension coming in but no savings and as my mum still lives in the house they were unable to take that into account. They also allowed for some money to be available so that my mum could pay bills (her pension is state pension and she is unwell herself).

It is such a hard decision and I think ultimately comes down to the finances and what social services say you would need to pay in.

all care homes also aren’t as bad as you imagine, we’ve put my dad in a smaller one (14 residents in at one time) and it really has a family feel. It also means she would have more interaction with others and do different activities - she could thrive in that environment. My dad is 70 and is the youngest in his home by around 10 years but he doesn’t seem to mind and to be honest sadly the illness has aged him badly anyway.

As much as you want the best for her you also have to put yourself and your families wellbeing into consideration. It’s such a difficult decision but I hope my reply somehow helps a little!

wishing you all the best! X

 

[Beate]

A care home will not kill you financially as it's not your money that has to pay for it, but hers, or the council's if she has none or not enough.

Please don't let misplaced guilt ruin your life. You have no legal duty of care, that's up to the state. Looking after someone else 24/7 is incredibly hard, and you won't be able to do it while working or having help from others.

Please contact Social Services, get assessments and explore your options.

 

[Agzy]

@Nat-ash-a your dilemma is like my own withe main difference being I am my OH’s carer and she at present is in hospital after serious UTI which appears somehow to have left her mobility damaged and indeed other symptoms seem worse. We don’t have a spare lounge but yes, a bed could be accommodated if some of her precious furniture was got rid of. There would also need to be a commode as only loo/bathroom upstairs. Pauline is not so impaired as to not know or notice if she went into a home, complete opposite in fact but if we adapted our, privately rented house (permissions and issue?) she would hate living in our lounge which would be so crowded. All this and there is my health as, at 77 I am no spring chicken. How do we make such decisions? Good luck with yours.

 

[rhubarbtree]

I would not get too fixed on PWD having an ensuite. I thought this was important but having an ensuite would not help my OH because as the disease progressed one door was the same as another to him and he is not able to find a toilet at night. During the day residents tend to stay in the communial rooms and use shared toilets. The home will provide a commode at night if needed.

 

[Weasell]

Are you in a position to monitor the safety of the 7 year old 24 hours a day? By safety I mean from verbal attack as well as physical?
A simple throwaway comment ‘ shame you are not a pretty child’ etc can cause real harm.
Can you talk to the home about how they think the no en-suite will effect things. Do others have one, so the room can be changed in the future?
In a perfect world the home would be nearer. Is it worth getting a quote from uber to find out the cost of the journey. If her partner is able to work due to not caring for her, then he may be able to earn enough money to pay for the trip?

 

[Sirena]

I hope you have accepted the care home room you were offered for your mum, and all is going ahead?

My mother is in a care home and doesn't have an ensuite. She is self funding and I could have chosen an ensuite room, but it was more expensive and I didn't think it was necessary. She needs help to get washed and needs prompting to go to the loo, so an ensuite wouldn't really have been much use to her - and there are multiple bathrooms nearby, she'd never have to wait to go in.

We tend to look at it from the point of view of what we would like ourselves, but it's more important to look at it from the person's point of view. They won't care about the decor, carpets, or ensuite, they just want (and need) somewhere with good friendly supportive care.