What type of carer?

[Sanderson82]

Hello. My mum has recently been diagnosed with Alzheimer's and currently lives alone and I'm very concerned for her safety. My plan is to sell her home and buy a large house where I live now and we will all live together (my house is too small.) however both me and my husband work full time so although will be around I won't be able to get her to groups and activities that I would hope she would benefit from. I don't know what type of care services are available and the cost I'm looking at. Is there such a thing as a carer who could come daily to do the things I ask? I.e some days just take her to the shops or for a walk round the park, other days take her to groups, other days to appointments etc? I'm not sure if that's realistic at all?
I'm really overwhelmed by this all and feel very guilty. My mum loves her house and has lived in it for 40 years and has no desire to leave but I can't move to London and she cannot be alone. I'm also not sure how prepared I am to take on what could be a very difficult person to live with and worried about providing her a good quality of life.
Sorry! It's all a bit too much but any help would be appreciated.

 

[Beate]

Hello and welcome to TP.

This is a huge undertaking you're planning so careful preparation is the key.

First of all the financial situation. How much money has your Mum got and how much after selling her house? Probably enough to be classed self-funding? Have you got LPA? Is she in receipt of Attendance Allowance?

Then next step is checking what support is available in your borough for carees and carers. If she's self-funding she might not need Social Services but she and you are still entitled to needs assessments, and they can assist in putting care into place. If you are both in full-time employment and she can't be left on her own, you will have to think about a day care centre and/or sitters. Carers to wash, give food and meds is also a possibility but they have limited time. SS can provide you with a list of agencies. Likewise they can provide you with a list of care homes for short-term respite. Contact your local Alzheimer's Society, Carers Centre and Age UK for any group she could attend on her own, any Coffee Clubs, Choirs or Singing for the Brain. Day care centres often come with their own transport bus, so you wouldn't have to ferry her around, but other clubs might not. A sitter, for example from Age UK, can either sit with her and chat or play games, or take her out for a walk, to a cafe or shopping. Anything really. A carer from an agency mostly comes in a few times a day just to do essentials like give food or meds. You really need to find out what's available in your borough and how much they would charge her, because it's a postcode lottery out there, and you don't want to uproot your Mum just to discover there's nothing available. I don't know where you live, but generally there is a better support network available in London than on the countryside.

You also don't want to go through selling and buying houses only to find she is too difficult to live with so please consider this carefully. A move can also be very unsettling for her, even if it's ultimately in her best interest. Also, will she be compliant with a move and any care you put in place? Not every PWD is. I'm not trying to put you off, just be very clear what you're getting into, and that with the best intentions in the world she might need a care home in a few year's time.

 

[Gwendy1]

Hi. I agree with Beate. It's a huge undertaking, and things can change very rapidly with this illness. We used to have dad with help several times a day at home, then 24hrs a day after a few months when he couldn't be left alone at all. After 8 months, the 24hr carers couldn't cope with dad at home and dad was in a care home... This 'journey' from dad functioning well to care home took about 18 months. There are, however, lots of options for carers to do the things you describe if you have the funds privately. Also, if your mum has money from selling her house, I'd get legal advice, just incase a care home is ever required? I hope all goes well for your family. There is always an answer- it's just that it can be stressful getting to it! Take care. Xx


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[Sanderson82]

Thank you for your response. The sale of her current house should cover the cost of buying one near me and leave a substantial amount to cover her long term care.
I am terrified of moving her. She has no desire to but also is in denial and thinks there is nothing wrong with her. We have had the conversation millions of times but each time I approach it she seems surprised by it. I just don't know what to do. The local council really don't offer much and I believe she is very vulnerable where she is but don't trust the council to provide what she needs and to be fair it's so hard for me to keep going back and forth (she's in north London and I'm in Kent) and I have a 4 year old so life is not easy juggling it all. I'm scared to sell the house, buy a new one and realise that it's all a nightmare as then I can't return her back to her old home. But would forever live with the guilt if something happened to her in her current home as we may not know for days.

 

[Gwendy1]

The 24hr care thing may be an option for you? I used an agency, the carers were very good. If your mum's current house has 2 bedrooms it may be worth you looking in to? Even as a short term measure. They lived in, did the shopping, cooking etc. Really, tho, it was just someone 'there'. I wish dad had been able to stay at home longer with them, as it was ideal while it lasted. I was lucky, that dad agreed to having help, he was accepting that he needed it. I know what you mean that you're worrying there's no going back if you make a big move. I'm still renting dad's house out as I didn't want to sell it. I'm fortunate that the rent and his pensions make up some(not nearly all) of the CH fees. X


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[Sanderson82]

I'm assuming though that the council won't provide 24 hour care though? All her money is in her property and I don't have the money to pay for it privately. However I could have someone live with us if we moved (as selling the house frees up her money.) Its just so hard to know what the right thing to do is.

 

[Gwendy1]

Again, tricky. You could apply for direct payments from the council( or can in Scotland?) think there's prob something similar in England. Really worth looking into all options before making any big moves. Dad's life savings were wiped out in a matter of months, but it was worth it. It's a whole new world when you get into looking at care options/ funding. Others here are expert on the financial side... I think there's a section for financial questions?? Feel for you, I remember how stressful it was few years ago, as I say, while new world of stress. Xxx


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[mancmum]

I do wish this had been possible for us.

I wish we had been able to do this but at the time I envisaged carrying on working and carers providing the day time care I quickly realised it would not work and I was too involved. I knew I held his memories and care worker would not have them. What the best care workers work to establish I had at my finger tips and in a more natural way ..at least I thought that.

You have a right to leave from work to find out if this is possible. Do use it before deciding to give up paid work. It might have been sensible for me to ask for a year's unpaid leave of absence before giving up work. I know you have not said you intend to do this but I mention it for others coming across this thead. I was concerned that while I could move my father that he would not willingly stay. It emerged that while he was able to say he wanted to go home and could appear perfectly rational ..in fact he had a such limited memory span staying alone would not have worked.

We asked him to stay for a short while to have a break and think about whether there were flats near me that he liked. This was pretty much a ruse. Every unhappiness was diverted with curry, or cake or playing with the teenage grandchildren. What treats do you have to divert attention if needed?

We told him he could go whenever he wanted and would he go by train or by coach. We knew he could manage neither and he was always happy to put it off and think about it tomorrow. Allow someone to do what ever they want tomorrow, especially if they can't remember that they wanted to do it.

While initially I had intended to carry on working I knew I would not be sad if that didn't work. I had a very difficult job and three kids and the live in girlfriend and to clear father's house 100 miles away. After only two weeks with him I realised that the carer's I had seen would not provide what I considered good care because I held his memories. Now I realise with planning perhaps I could have been replaced by a good carer ...but the agencies I contacted could not provide a 40 hour a week day time carer. You can ask for people to do what you suggest and they are out there but perhaps start finding them now before you sort out a move. Even at six weeks notice I could not find them. If you can manage it I would consider bypassing an agency because you can offer a better pay rate than they can after they have taken their rake off. I have had successful short term care provided by a third year pyschology student [good if you are near a university], an older unqualified woman who had been very fond of her father and now I am about to have some times covered by a professional care agency.

In terms of the house if at all possible look for a property where there is a sanctuary for you. Maybe somewhere with an annexe or a town house type place where a bedroom is on the ground floor, then there is living accommodation and a further range of bedrooms upstairs. Turn one of the bedrooms into your sanctuary sitting room. Obviously things like a downstairs toilet and shower are also good. It means as things progress there can be a degree of separation between the caring bit of the house and your bit. This is important because it means one bit of the house can be kept tidy with equipment always in the same place.

Its murder sorting my house out for it to be workable for this even though all the kids (and the live in girlfriend) have now moved on.

Especially when there is just my husband and me I yearn for a bit of the house that is ours and ours alone.

Find out what lunch clubs and resources are available locally and get somewhere within walking distance of that if possible. I guess if you post rough location, people can point out places.

If your mum is property rich I wouldn't dismiss sheltered housing with an onside warden and then using the carer to support them during the day. You can obviously visit possibly daily. It can be easier to establish routines etc in somewhere which is not your home and which will vary from day to day - well at least mine does.

We found even though tired father will insist on staying up because we are up. We now 'Lock Up' for bedtime and ask him to turn the television off if he is staying up. He whizzes up the stairs like grease lightening ..and we creep out of the kitchen to watch late night tV .even though we should probably be in bed, but this is our space together.