1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    134
    Hi, I am new to TP, but have been reading posts for a while and found lots of advice. I hope I am posting in the right place as not too sure.
    My mum was diagnosed with Alzheimers 3 years ago following a fall at home. She was cared for by my dad who sadly passed away in 2017 so now my sister and I look after mum. Mum doesn't change her clothes or shower, can't shop, make meals other than a sandwich, has no short term memory, but otherwise is jogging along at home.My sister and her 4 grown up children live near mum and I live with my family a 3 hour drive away. We have POA in place, DD for bills and AA. Mum goes to a day centre 4 times a week and has carers come in on the other days ( tho insists she needs no help and won't let them do anything).She has a weekly cleaner who comes when she's not at home.my sister works full time and has grandchildren she tries to help out with too. She does mum's weekly shop and goes to mum's at the weekend to pop in a microwave meal, put on washing etc.She's there a couple of hours Saturday and Sunday and is finding it hard not having free time and can get quite bitter towards me at times. I go up to stay with mum every 3 and a half weeks for 4 days to help out, take mum to DR/hospital appointments, co-ordinate plumbers etc and have done paper work for insurance, POA refund for dad, selling premium bonds and other things like that but am at a loss about how else I can help. I know my sister would like me to visit more frequently , especially as I have now retired , but I have inlaws to support too ( in another part of the country) as well as wanting to have a life at home with my family and friends and hate the actual drive up the motorway.
    I feel guilty, and don't want to be thought of as an "invisible", and wonder if anyone can suggest how else I can help mum and my sisiter.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,935
    N Ireland
    Hello @anxious annie, you are welcome here.

    You are doing a lot already so I wouldn't feel guilty or think of oneself as an invisible.

    I'm sure others may be along with suggestions as a number of members care from afar. I know one thing people do is shopping by the internet.

    Maybe its time to think of a fresh needs assessment and the factsheet you can reach with this link would help with that. Click the 2nd line to read/print

    Assessment for care and support in England (418)
    PDF printable version
     
  3. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    134
    Hi Pete
    thank you for your reply. I think internet shopping would be a good way to go so will talk to my sister about that. mum had a needs assessment a while ago after dad died and she has changed since then so would be good to get an update.
    I know we are very lucky compared to lots of people on TP as mum is coping with the support she has at the moment. I guess I'm just thinking ahead about how she will deteriorate and can see that this could go on for years and am being selfish in wanting to do other things in my retirement. I love my mum and she is still the sweetest person i have ever known so want to be there for her too when she needs me.
     
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,935
    N Ireland
    Hello again @anxious annie, I think it's a great idea to prepare for the worst but hope for the best - I do that myself.

    You will find lots of information, including answers to questions, in the AS Publication list that you can find with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    If you want to look for local support services in your mum's area you can do a post code check by following this link https://www.alzheimers.org.uk/find-support-near-you

    Otherwise, do take a good look around the site as there is a lot of information and wisdom here. If you have any specific questions just feel free to start your own thread in this sub-forum https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/

    As a final note, don't feel selfish to want a life - it's something to which we are all entitled. Dementia will become all demanding if you let it.
     
  5. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,672
    Female
    Sending an internet shop is a good idea - I lived a distance from my mother so I used to get her a regular shop of heavy things she and the carer couldn't carry.

    I know it's difficult not to feel guilty, but being there for 4 days a month isn't being an 'invisible'. It sounds as if you are already doing quite a bit, and while the proximity makes it inevitable your sister will be more involved in your mum's care, that isn't your fault. You can only do your best, and you are entitled to have a life.
     
  6. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    134
    Thank you @karaokePete for your useful links.
    Thank you @Sirena for your suggestion about the heavy shopping, I can stock mum up when I am staying with her.
     
  7. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    1,036
    It sounds to me that you are far from being an "invisible ". Could the carers not put in a meal in the microwave at weekends? I suppose if SS are involved that would depend on their funding it. You don't say what is in the care plan for the carers even if your mum doesn't let them do anything. I agree with internet shopping. My MIL had a doorstep milk delivery which also delivered fresh food and other essentials. All run by me online
     
  8. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    134
    Hi @Rosettastone57,
    We wish that mum would let the carers do a microwave, but sadly she tells them shes not ready for her meal and will have it later. When she's not at day centre she has a career call, but we usually find that day's meal left in the fridge later in the week. The carers are supposed to help with a meal, throw out of date food from the fridge, empty bins changing liner (they smell with mums pads), check the bathroom floor/sink for poo. In reality they don't seem to do much of this, despite phone calls/notes in their book to ask them nicely. They say if mum says she doesn't need help they can't do anything. They're a bit of a waste (mum pays a contribution for the care), but keeping them going in the hope that as mums needs progress, she will accept the help. Is peace of mind to, we know she's in the house and safe. Ideally we'd like morning calls to prompt showering, clean clothes etc, but there's no way she'd go for that just now
     
  9. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,623
    USA
    Respectfully, the carers should smile and nod when your mum says she doesn't want her meal, and prepare it for her anyway. She may not eat it but at least they will have tried. It's a good rule of thumb not to argue with dementia, but that doesn't mean the person with dementia can make good decisions and that we have to do as they say. Agreeing but then going ahead with whatever needs to happen can work.

    Online banking and internet shopping were a huge relief to me, so perhaps you could try that?

    I am an only child so never have to work with a sibling. It's laudable that you want to help more and preserve your sibling relationship. Perhaps there are tasks such as paperwork or bills that can be accomplished long distance by you, or something else specific your sister would really like help with. Perhaps you might ask your sister directly about how you two might divide up chores. Maybe there are tasks that can be farmed out (repairs, cleaning, laundry, outdoor work) to lighten the load (both at your mum's home AND yours). Maybe just talking about it, might help?

    I also wonder if your mum could use a new assessment and maybe an increase in care. When my mother was at the stage where your mum is with refusing help with things like meals and saying she would "eat later," she actually needed a great deal of help and wasn't safe to be left alone, ever. I don't mean to alarm or scare you, just that sometimes the stage of needing 24/7 supervision sneaks up on is, because the person seems mostly okay. My mother got in a horrid state (medication mismanagement and resultant medical problems, malnourished, sleep deprived, car accidents, losing money to scammers) and I would not like for anyone else to have to endure that. Long distance caring is hard.

    Very best wishes to you and your family and I hope you can find a way forward.
     
  10. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    134
    Hi, Amy
    Thanks for your post. We are worried about how little mum eats when we're not there as we end up throwing out lots of food. I think you're right, we need to ask the carers to heat a microwave meal and see if mum eats it.
    We do Internet banking and a cleaner comes in when mums out so that helps us. Mum has very little laundry to do as she rarely changes her clothes, other than underwear that she sees are stained.
    Good idea to speak to my sister and ask her what else she would like help with. I do most of the paperwork and consult with Dr etc, but am sure she may suggest other things . Thank you for your suggestions
     
  11. Bod

    Bod Registered User

    Aug 30, 2013
    1,164
    Regarding meal preparation, I had a similar situation with my father, in the end I gave written instructions to the Carers, along the lines that the time for choice had past, in order to ensure he was fed, a meal should be prepared, then it was his choice whether or not to eat it.
    It didn't take many days, before he was waiting knife and fork in hand!
    Whilst he was eating other jobs necessary were done.

    Bod
     
  12. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    1,036
    My MIL had carers and was self funding. She was very much like your mum,it was always "I'll do that later ". The instructions I gave to the care agency were that they were to heat up a microwave meal whether my MIL liked it or not. She couldn't even make a meaningful choice as to meals. Invariably once heated the carers would sit with her and chat with her making a social event. This made her feel it was more normal and she would eat it. Eventually she accepted the routine and got angry if they arrived late. She was on her own and the only family help was my husband and I. There was no way she was coming to live with us nor were we going to put our lives on hold for her. During the 3 years she had carers we organised everything either online and with extensive help from the care agency . Of course this is easier to organise if you're self funding. Eventually she needed 24 hour supervision which means alternative accommodation. She was no longer safe on her own. She refused personal care for many years,it was only once in the care home that she was finally bathed. It's not easy but we decided she was just unsafe when the carers weren't there.
     
  13. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    134
    Hi @Bod and @Rosettastone57
    Thank you for your replies
    Yes, I think we definitely need to tell the carers to make the meal and then mum has that choice to eat it.
     
  14. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,557
    I had a lot of problems getting my dad to eat. He would always say he would have it later but he wouldn't or he would just say he wasn't hungry even if he was.

    Now I give him no choices, I just make his meal, put it on a tray and he eats it, every bit. Half hour later I give him his pudding, again no choices and he eats that too.
     
  15. Malalie

    Malalie Registered User

    Sep 1, 2016
    306
    Female
    It could maybe help if the carer could sit and share a meal with her, be it only an apple or a Kit Kat - just the thing about sitting eating together. She may be back in the time when she was the one who cooked and served food and sees it as weird that she should be served food in her own house. Just an idea - it's so difficult when our loved ones are completely unaware that anything has changed.
     
  16. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,672
    Female
    I agree that the carers need to prepare a meal and give it to her. They should not ask her if she'd like her lunch, or what she would like to eat, they should just say "time for lunch" and do it. If she doesn't eat it, that is her choice, but I suspect if they persist she *will* eat. Preferably they should then stay while she eats and have a chat as that should encourage her. My mother won't eat if you just plonk food down and walk off, but she will eat if someone is there with her. If the carers can accomplish that, it would be a big help to all of you.
     
  17. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    134
    Hi @Duggies-girl
    Thank you for your post.
    I am going to speak to the care agency about heating up the meal, without asking mum, and feel this will help
     
  18. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    134
    Hi Malalie
    Thank you. Yes mum definitely feels that she still does everything, when the reality is the opposite. She doesn't like the carers coming in and, although not nasty to them she has been quite hostile when I've been there and they have called. Hopefully if the food is made she will eat it like she does when my sister or her family heat up a microwave meal
     
  19. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    134
    Hi @Sirena
    Mum can have a good appetite and always eats well when I cook for her or we eat out. I think you're right and she likes the company so will ask the carers to sit with her too, thank you for the idea
     
  20. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    1,036
    Further to that, when MIL had her home visits from podiatrist, I would cancel the carers visit at lunchtime and do her microwave meal and eat my own packed lunch with her while we waited for the lady. With my MIL it was all about not being seen as different to everyone else. Once the podiatrist arrived early when she was still eating. My MIL took great delight in telling her that she would always have her cooked lunch at this time, so the lady was not to get there early again. MIL always said she didn't want carers but the reality was she could do virtually nothing for herself . She was often aggressive about them but I stood my ground and refused to cancel them
     

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