1. Breco

    Breco New member

    Apr 25, 2019
    Hi, I'm new to this forum, just wanted to get a few opinions on what to do.
    Our mum has Alzheimer's (memory gradually going worse) At the moment,and for last 18 months we have been staying with mum 24/7 (between 4 of us) We are finding it getting harder trying to organise who can do what days. We all have our own family commitments. Just wondering, should we get outside carers coming in for few afternoons a week maybe a sleepover now and again. Would we be better getting an independent carer, or paying 2or 3 times the cost with an agency. Don't know how mum will take to it, especially if we have to sign up to a contract. If we went to an individual, what checks do we have to ask for? Any input, information or ideas will be helpful.
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello @Breco, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    What you are doing seems unsustainable to me and I think it may be a good idea to get a needs assessment for both your mum and the carers.

    I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there



    You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
  3. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    I think you are right this situation is completely unmanageable. Just to be clear are you saying that as a family you are providing 24/7 care because your mother cannot be left without that care ,because if that is the case then I think she should be in residential full-time care. If however you are saying that your mother just needs support initially because she is at the early stages then getting carers is probably the right thing to do. You are entitled to a life of your own and your families are also entitled to life with you. don't get sucked in to doing everything for your mother because it will draw you into a situation where you will be expected to cover every demand. You will end up lurching from one crisis to another. I'm sure others will be along shortly who have more experience of being hands on care s as as a family than we were with my mother-in-law
  4. Breco

    Breco New member

    Apr 25, 2019
    Mum is not very steady on her feet now, she has arthritis in her knee so uses a Zimmer frame and prone to knee giving out. We got told 18 moths ago from hospital, a home maybe best for her. But, we thought we'd manage, as time has gone on mum getting worse so that the reason we need someone with her in case she had a fall and was on her own.
  5. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    My mother-in-law was a high falls risk and it got to the point, where even with carers 3 times a day ,she was unsafe in her own home. It's not when the carers are there, it's when they're not. My mother-in-law was self funding but having a live in carer overnight was too expensive. The only option was a care home. There are forum members who have experience of live in carers who I'm sure will he along soon.
  6. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    Hi @Breco I am in the same situation with my dad. Myself and my brother stay with dad 24/7 with occasional help from my husband or my sister in law but in truth it is mostly myself. I am now looking forward to a 9 or 10 day stint with my husband doing a night for me. The boredom is immeasurable.

    We have been doing this since dad came out of hospital in January with the hope that dad will improve and he has enormously but still not enough for him to be left alone. He could fall or even go outside after dark and I couldn't have that.

    I will say that the care we have given him has far surpassed any care he had in hospital. He had 3 falls in hospital and lost 2 stone in weight, since being at home he has not fallen once and has put on a stone.

    You are obviously doing a great job but I don't believe that it is sustainable for a long period. . Dad has cancer and is due a scan soon and in June we are expecting some sort of vague prognosis and then we will decide whether to carry on or not. It really depends on how long we are looking at.

    I don't think outside carers would be adequate for dad or anyone who needs 24 hr care so we have not considered that. Of course if dad keeps on improving our situation may change and we can go back to how we were before with me running myself ragged back and forth but I suspect that a care home may be the best option for us.

    If you have been doing this for 18 months then you really deserve a break and you have my utmost admiration but you have lives to live too.
  7. Breco

    Breco New member

    Apr 25, 2019
    I know what you mean about the boredom, bought mum a wheelchair 12 months ago to take her out. She won't go in it. Moans she doesn't know anyone where she lives, then says I'm not having people looking at me in a wheelchair. Even to take her shopping, little cup of tea & a cake. She won't hear of it. So when we're there, it's sitting in house /garden. She is very stubborn.
  8. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Sometime you will have to make a decision that is in her best interest, not what she wants to happen

    I think what you as a family have so far achieved is amazing, but it’s not sustainable is it

    What if one of your links in the chain broke and couldn’t be a part of this care package you have between you all?

    Best to have something in place before a link, or links break are my thoughts

    If the hospital suggested care home, the possibility is that that’s the solution that is best for her.

    Dementia takes and keeps on taking. It’s taking who your mum was. To your detriment

    The hardest part of this taking of a person by dementia is to realise that what might not be a suitable situation in your eyes, or “old” mums eyes, it’s what situation is best for “new” mum and what is needed now. It’s the realisation that you now have a very different mum than she was is so hard to deal with

    She needs 24/7 care in a safe care home environment, which isn’t always possible to achieve at home, as you are sadly finding out. It’s not easy, feels impossible to do, but sometimes it’s the best thing to do to keep mum safe

    My heart goes out to you xx
  9. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    Chard, Somerset
    Obviously I can only cite my own experiences as no two people are alike. As an ex-carer and looking back, I can see that I let things carry on for far too long without proper help. Once I bit the bullet and got the proper help, life improved for me. Regardless of mum's wishes, I had to do what was best for me (which made it better for her in the long run). Carer breakdown helps no-one, so I got help. Two lovely ladies came in on weekdays and got her up. She would not get up for me and she refused all help (apart from me) when asked. Also, when asked if she wanted to go out, her default position was a resounding no. That did not help her with boosting her social skills, her ability to eat a meal with a knife and fork, she missed some great clubs with facilities for people with dementia, etc.
    She complied when a third party intervened and the carers - which she was initially told were ladies training to be carers and part of a government scheme, so were coming in to be assessed as suitable for full time employment with the council - free of charge of course. For a day or so that made her feel important in helping others. After that she forgot and accepted them coming in to assist with showering and dressing.
    That freed me up to get on with things first thing in the morning and relieved me of a lot of pressure and upset in trying to keep her clean. Our relationship improved no end as neither of us were stressed and grumpy. So I could plan for her attending her clubs and day care on time and life became a lot less stressful. She may have said she would not go out but she was dressed, clean and put into the car and delivered to whatever the day's events were. She enjoyed these events and they kept her going mentally. She went on all sorts of day trips although she could not remember where she had been or what she had done by the time she came back. But living in the moment as she was, she was happy. Much happier than sitting indoors.
    Long post and I am rambling but what I think I am saying is that it is really not up to the PWD if they can no longer plan, think things through, don't feel in control or confident enough to make a decision (hence the 'no'). Roles are now reversed and you are there to do that for them - be it getting help into her home or finding a care home for her.
  10. Sirena

    Sirena Registered User

    Feb 27, 2018
    So you are thinking of carrying on as you are, with the family doing most of the work, and a carer supplementing for some afternoons? You wonder how your mother will react - if you ask her she will almost certainly say no, as she wants the family to do it all. So you just have to go ahead regardless.

    My mother had carers in for 4 hours a day, rising to 6 hours (then she moved to a care home a year ago). I used an agency who were brilliant, she had two favourite carers who did most of the hours, but there was always someone there to step in if they were not available. The contract stipulated that you needed to give 2 weeks notice (which is fair enough, since they have to deploy the carers elsewhere).

    Would you consider a care home?
  11. Breco

    Breco New member

    Apr 25, 2019
    Thank you for all your replies. It has given me a lot to think about. At this moment in time, the family think try with the help of the carers coming in. We will research into it. I'll keep a look in on this site, I find it helpful.

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