How do you decide when full time care is needed.

Discussion in 'I care for a person with dementia' started by betsie, Dec 7, 2015.

  1. betsie

    betsie Registered User

    Jun 11, 2012
    252
    Hi all, I just wanted some others opinions and advise.
    I lost my dad earlier this year to dementia, he had been in a home for 2 years prior to his death, a place I became increasingly unhappy with but left him in as I felt a move to an unknown would be worse ( something I deeply regret now).

    I am now the main carer for my mum who was diagnosed with mixed dementia nearly 3 years ago. She lives alone with her dog round the corner but is becoming increasing distressed especially in the evenings. She phones frequently from 6ish either looking for animals, saying the dog is lost, crying because the dog won't eat it's dinner or go to the toilet, looking for children or asking why she is in the place she is as it isn't her house. Tonight my sister phoned and she said a man was there, it transpires the nets had fallen down in the spare bedroom and she asked a man who was walking past if he could fix them. Poor bloke went into help and luckily was honest and all was ok but it is very worrying. I ended up going round as she then couldn't open the back door - she had every key in the house out.

    By day she is not too bad, I go first thing and she is up and dressed, I do her breakfast then she takes the dogs out. She can put washing on ( sometimes uses fairy liquid) and is always dusting and sweeping up leaves. I go back after work in the week at lunchtime to make her something to eat and make her a salad for tea and feed the dog ( she would only eat toast, cakes or crisps if I didn't). She can't really concentrate on the TV or read anymore. She has also asked her friend who visits occasionally where my dad is.bbi also do her tablets, manage all her finances etc.

    My two sisters feel it is time to start looking for a home due to her distress in the evenings ( if she is at my sisters and not alone at this time she is a bit manica cleaning or washing up but not upset).

    Because she is still ok in the day to I worry she will hate a carehome ( she was a geriatric nurse and worked in a home when she left the NHS she always said she would rather die then go into one herself). She also loves to walk and would hate being stuck in a lounge all day with a TV on sitting in a big circle like my dad was.

    My other worry is although she would be self funded for a while ( has about £50k spent most of there money on dads care) it won't last forever. The homes near us are either £2,500 a month ones the council use or £5,000+ a month luxury ones there doesn't seem to be anything inbetween.

    I am not going to lie, the stress of looking after her, working part time and managing my own children ( both at home, one still at school)and OH is making me ill. I feel torn between them all.

    I know there is no magic answer but wondered when others decided. Sorry for the long post,
     
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    I can't answer your question about when to decide but I can relate to your experiences. I also had two teenagers (my mum died a year ago this week) and my mum lived in a house around the corner from us and she reached a similar stage to your Mum and was desperate to stay at home. We got over the evening problem by having her round for a meal with us every evening and then playing a game of cards - it was only for about an hour and half in total - and by the time she went home she was happy to have had been in company and quite tired. I have to admit that I then went back later (In the last year) to settle her for bed. When she didn't come to us I had a carer go in and i would then go later always at bedtime (usually about 9ish as time went on) just for my own peace of mind. The evenings were too long for her to cope with alone. It was a lot of work but she so wanted to stay at home that we just made it work but it isn't for everyone by a long way. Of course the fact that she was a few minutes walk from my house made a big difference.

    I'm sorry I can't help with your main question :(
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,088
    Yorkshire
    Hi betsie
    I decided when my dad wandered off in the middle of the night in only his pjs - no slippers, no glasses ...
    This part of your post is the telling part for me
    Your children matter so much - your OH matters - you matter very much
    and yes your mum matters, and she will be well taken care of in a care home - so that you can stay healthy and be her caring daughter, whilst also being the mum your children need and deserve
    so chat things over with your sisters and work out the financial situation, it may take some thinking but you'll do it somehow
    very best wishes
     
  4. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,289
    SW London
    I would say it's when

    The person is just not safe to be left alone at all any more

    For whatever reason, family can't cope any more and carers coming in is no longer enough

    The person is anxious/frightened/agitated when alone, and it's not possible for anyone to be with them all the time.

    Any or all of these, really.
     
  5. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,991
    Suffolk
    When he started falling and I couldn't pick him up.
     
  6. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    515
    We're struggling with the same dilemma for my MIL - she's sort of OK with carer visits during the day, but she's getting more and more upset in the evenings and there is no family member who can stay overnight regularly. Almost all her money is tied up in the house, so we don't know how we can access enough money to pay for overnight carers without selling the house.
     
  7. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    769
    My grandmother had dementia. My mother said basically don't let me be like nan. Unfortunately mum has dementia and had to go to care.
    My dad died and on that day mum said herself she couldn't stay by herself. She moved into care much closer to me.
    I am glad mum made the decision herself though she would have had to go into care anyway.
    Mum was a danger to herself. Care home was and is appropriate for mum
     
  8. mungobella

    mungobella Registered User

    Dec 29, 2013
    15
    That's something we're really struggling with as well, and it doesn't seem like there's ever an easy solution. Have you thought about getting private carers in in the evening, just to give her her tea and settle her for bed? It would at least give you a bit of a break and it seems like that's the time of day she is most likely to be a danger to herself. My FIL was getting much worse over the summer, so we employed carers to come in for two hours in the morning, just to make sure he had some breakfast and to take him out for walks and round to the shops and whatnot. It's not cheap, but it's less expensive than a care home, so if it helps hold that off for a while then it should be worth it.
     
  9. Risa

    Risa Registered User

    Apr 13, 2015
    483
    Essex
    Maybe it might be worth visiting care homes both in your area and perhaps a little bit further out to get an idea of costs and what they are like? Having had such a horrible experience of care homes with your Dad, it might help you reach a decision if you have a little reccy.

    It does sound that your Mum is able to stay at home because you are doing quite a lot to help her. Can you get carers in more frequently to give yourself a break?

    My Mum also has mixed dementia but for now she is being cared for by my Dad so we aren't having to deal with this issue yet.
     
  10. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,539
    Ireland
    For me it was when my late husband's condition reached a point where I realised that with the (very low) level of support available to me, I simply couldn't, on my own, give him the level and type of care he needed. He was aggressive about personal care to the point where trying to change or clean him by myself could be dangerous. And his health was rapidly deteriorating to the extent that I and his GP felt that if he remained at home - refusing to take his medication, refusing to eat or drink enough - he wouldn't live more than another three or four months. He settled well in the home, ate everything, loved the staff, took his meds- and blossomed! He showed no aggression, and lived happily for 11 months there.
    I keep repeating on TP: Giving our loved ones the very best care doesn't always mean doing it ourselves! Sometimes providing the best possible care, suitable for the person's needs, means stepping back and letting someone else do the actual hands on part.
     
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    There are schemes to release money from homes but you need to take advice - Age Uk used to be involved in this so it might be worth giving their freephone helpline a ring to find out if they still do this
     
  12. Mannie

    Mannie Registered User

    Mar 13, 2014
    116
    Bracknell area
    We have engaged a live in carer, the other alternative might be a package of care visits which include a longer evening session in order to keep her company. To get advice you can request a needs assessment from social services( you can ask for this directly or via your mums GP), they will help you about what type of care options you have, based on the info they gather about your mum and her situation. They do this and only after wards they will look at how it will be paid for. This might give you some ideas that you have not thought of and also what works for others in the same situation.
     
  13. betsie

    betsie Registered User

    Jun 11, 2012
    252
    Thanks for all your responses. I have been in contact with the local Alzheimers org and they are sending someone to assess her next week. Depending on availability, I'm hoping to get someone in for 1-2 hrs each evening to help stop her getting distressed during her sun downing.
    I'm not sure what mum will say as she thinks she is totally fine and doesn't need help.

    She had her friend visit today so all was good apart from putting fairy liquid in the washing machine instead of comfort.
    Only had 3 phone calls tonight, one involving the heating. Trying to instruct her to do anything over the phone is unbelievably frustrating, I did have to laugh though as I'd put a note over the heating thermostat saying "do not touch, it turns off itself" she must have read that out to me about 10 times.

    We are going to start looking at homes after Xmas to find one or two we like so when the time comes we are prepared.
     
  14. candymad

    candymad Registered User

    Dec 8, 2015
    21
    Derby
    I'm also not sure if my mum needs to go into a home now, she can't get out as for some reason she is incontinent, I don't know if she has just forgotten how to control it. The other day she came out of the toilet and was very disctressed at the fact she had opened her bowels saying "that shouldn't happen, it's supposed to be automatic since I had all my insides moved about".

    We don't know where this is all coming from, she is adament that she does not go to the toilet this way, when asked where does it come out she gets very aggitated, because she doesn't know.

    I have been going in every day I take in both cold food and something for her to heat up for her dinner, but I don't think she knows how to use the microwave anymore.

    She is now refusing to take her tablets, and it was suggested that if I went in 3 times a day to make sure she has them it would be a help, I can't go in 3 times a day, I live about 3 miles away from her, but 3 times would be an impossible task. I spoke to my brother and he said what do I get carers allowance for if it wasn't to go in to care for mum, this made me feel very depressed, as he doesn't go to see her, so I assume it's because I'm getting money to do it, my other brother lives in Spain, so he doesn't see her either. I live in Spain also, but have rented here as close as I could since April 2014, money is running out and I don't know what will happen when it does.

    I think mum fell the other day she has a bruise on her lower back and the district nurse says it was probably from a fall, she cut her hair the other day and made a right mess of it, she also cut her ear!!!

    I feel all alone at the moment and just don't know what to do, I went to the doctors the other day as my blood pressure is up and I have to have an ECG and a blood test, so I don't know what that will show up.
     

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