Why is it progressing so quickly and should he live alone?

Discussion in 'I care for a person with dementia' started by JanP, Dec 19, 2017.

  1. JanP

    JanP Registered User

    Nov 22, 2017
    10
    i can't really get my head around the last 2 months...
    We lost my Mum in March 2014 and Dads been quite a lost soul since then I suppose. He's always been a family man and isn't very sociable with anyone else, quite shy - Mum was definitely the boss . For the last year I've noticed that Dads memory was starting to go a bit but he was carrying on as normal - driving locally, shopping for food, a little bit of cooking, dog walking. My brother lives away and didn't see a problem but I guess if you don't see someone day to day, the conversation is much more top line. You don't see the repetitiveness etc. In August this year, I booked to see the GP as I thought he was possibly depressed and/or mild Dimensia, or just lack of interest in life which was affecting his engagement in conversations which was leading to him missing things and forgetting things. The GP referred him for a head scan and to the memory clinic, appointment in October.
    Meanwhile, I was a bit concerned when he had a dog groomers appointment and had no idea where it was, although he's been going to the same place every 2 months for 7 years. Then I realised that every day when I'd ask him what he'd done, he wouldn't know. One day he went to a dentist appointment (by car) and rang me in a panic thinking he'd missed it - he'd actually been there but had no recollection of it.
    So, at the October appointment, he was diagnosed with mild Alzheimer's, which was no surprise. I've since stopped him driving and have taken over his food shopping and plans, arranged cleaner etc but suddenly his short term memory is absolutely non existent. Is this a result of having "the diagnosis "?
    Tonight, he's asked me over 100 times what day it is, when is Christmas Day, when my brothers coming...
    My dilemma is, should he be living on his own? He only lives 2 mins away but I work 4 days and travel a lot. I talked to him last week about whether he wants to stay living at home - of course he does! But he rings me every hour throughout the day, is extremely anxious and is very aware that his mind is going. It's awful. He hates strangers ie cleaners coming in and is very lonely but would never consider moving ( unless possibly in with me ) but all my friends think that would be the worst idea possible. I've realised this week that unless he's prompted to do most things, they don't get done ie shower, clean undies, sort rubbish, clean clothes, what to eat,
    Is there anyone else out there who has had a similar dilemma? Should be live on his own? I hate that it's only me making the decisions, what pressure.
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,778
    Female
    London
    I doubt that a diagnosis accelerates the symptoms but if this has come on very suddenly, try to get him checked for a urine infection (UTI).

    It is very very hard to look after someone who lives on their own, especially if they don't want outside help. They deteriorate but you're often not sure how much because you cannot be there 24/7.

    There is lots of help available but your Dad will need to be cooperative. Would he agree to going to a Day Centre? They've been a godsend for us as they kept OH safe and entertained during the day. We also had sitters for ten hours a week and a morning carer from February when OH's mobility declined. But the thing is that OH was always very compliant with all of this. He was a social person and loved the Day Centre and people making a fuss of him. It's a lot harder if someone is resistant. You need to either find a way to get him to agree to more support at home, or at some point a care home will be the only option to keep him safe, whether he wants that or not.

    Can I ask whether you have POA for him? If not, please organise both versions as a matter of urgency. He should also be entitled to Attendance Allowance, and the SMI council tax disregard.
     
  3. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,757

    @JanP I could have written your post exactly although my dad is very tidy and still does his own washing and he does not ring me a lot. I am exactly where you are now although I think my dads decline has been a bit slower as my mum died in 2011 and she had already suspected some kind of dementia that I had not noticed then. My dad is also a shy man and a real gentleman.

    It is good that you have stopped your dad from driving as I found that a real struggle and dads car ended up very dented. It was only when he lost his car in town that I managed to get him to see a doctor. He was diagnosed in November.

    My dad still lives alone in his bungalow so no stairs to worry about and also no gas to leave on but I worry all the time. To be honest if it were not for me he could not stay there on his own. I have to do everything for him. I take him shopping and to his appointments and out for lunch and other outings. I have to keep check of what he has in his fridge and what he has eaten. I spend hours with him everyday just doing menial things to make sure his is ok. I also work part time at the moment but don't think i can keep it up for much longer. I don't think dad could move in with me because I have stairs and my own family also to think of.

    My dad is 88 next year and has already forgotten that he has dementia and thinks he is perfectly normal. I take him for his haircuts and get his tablets ordered. I take him to the cash point to get his money out as he is not capable. I check all his mail and finances because he gets confused. I used to travel but now I don't.

    You can see where all this is going can't you. If you try to keep him in his own home like I have without some outside help you will become me and it sounds like you are on the way there with what you have been doing for your dad. It starts out by just helping out and suddenly it hits you that your way of life has gone and you are being run ragged. Sorry if this does not sound promising but this is how it has turned out for me and I don't consider my dad to be too bad yet. It is his vulnerability that worries me.

    You will get lots of different views here on talking point and I would say keep checking in as it is a really useful forum. Someone may give you some good practical advice soon.
     
  4. Bunpoots

    Bunpoots Volunteer Host

    Apr 1, 2016
    3,619
    Nottinghamshire
    Whenever I read a post by @Duggies-girl i think how similar our situations are. I too slid slowly into realising that my life revolves entirely around dad's needs. He too lives in a bungalow, no gas fire or cooker to worry about, or he wouldn't be living at home now.

    My dad refused all social activities outside the home, although he did go to a lunch club in the early stages, but he has accepted someone who goes three times a week for 2 hours at a time which allows me to work.

    If someone didn't check on dad everyday, and clean up after him he'd be living in squalor. He used to do his own cleaning and laundry and gardening but no longer manages that . He now lives on cake, and sandwiches and fruit. Can still make himself a drink but wouldn't have a hot meal if someone didn't make/ heat one up for him.

    I'm grateful that dad has accepted his "housekeeping lady". I had to introduce her gradually. We started with about 2 hours a week. I introduced her as a friend who needed a little cleaning job. But if dad hadn't accepted this help I think he'd be in a care home. I couldn't have managed to give him the amount of care he needs and work part time. I couldn't move him in with my family, we have stairs and sanity to consider.

    My dad is 89, increasingly frail, and probably a little further along than Duggies girl's dad.
     
  5. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,749
    Female
    Kent
    You have already had some good advice here...I too am wondering about the day centre. My situation, although I am caring for a spouse, is not so very different. It is not a first marriage, we each kept our own houses, he is much older than me...and if it were not for me, he could not be living independently. I’ve ended up running both houses...but my main point (sorry!) is that he has just started at a day care centre. He goes to a Cogs club once a week, one day at the centre...and we are about to employ someone to sleep in two nights a week. I thought he would hate the club and centre. He is a very proud man and likes to make his own decisions...but he actually really enjoys being with other people. He has made friends with men at the club, and he met a former colleague at the day centre yesterday. It might be worth giving it a go. It’s not just for the company, I have seen a big improvement in his mood and behaviour. Instead of sitting quietly in a group now, he talks again. He is more like his old self.
     
  6. JanP

    JanP Registered User

    Nov 22, 2017
    10
    #6 JanP, Dec 20, 2017
    Last edited: Dec 20, 2017
    thanks everyone for your posts. I've put in place the necessary POAs, just had attendance allowance confirmed etc and luckily my Dad is very compliant. He may not like having things lined up for him, but he accepts that things need to change and he trusts me completely. I've just employed a cleaner who is also a qualified carer for 2 hours a week. I hope that he'll start to like her and I can increase her hours as time goes on. As a few of you have suggested the day centres, I may revisit this idea with him. He's not keen on doing anything for longer than an hour or so, so it may be very distressing but hey ho, you don't know unless you try. Seeing your posts has really made me rethink about me having Dad to live with me. Deep down I know it wouldn't be the answer and it's really insightful to hear about other people's experiences. It's that awful dilemma isn't it around your sense of duty but being blinkered to the impact it would have on the whole family. I know I need to get more help involved and will use this time over the hols to work out a plan! What needs to be prompted...what I can do over a phone call etc.
     
  7. JanP

    JanP Registered User

    Nov 22, 2017
    10
    Thanks @Duggies-girl. It really does sound similar, all the things you've mentioned, I do too. You're so spot on about the vulnerability. I worry about who he'll answer the door to as he's too trusting now. If I buy something for him, he loses track of the fact he has already paid me and would pay me again and again. It's worrying to think that someone else could do wrong by him. At least now he doesn't go anywhere without me, so I have control over his money, food etc. Before I stopped him driving, he'd be loading up his fridge and not looking at the dates on food, it was much worse. He doesn't cook now so it just takes some planning on my part. I had to laugh last week though, I put some home made roast dinners in his fridge for Mon & Tues - why was I surprised that he ate them both on Monday.
     
  8. JanP

    JanP Registered User

    Nov 22, 2017
    10
    Thanks @Amethyst59, maybe the day centre will be an option in the new year. I'll try anything that may give him a boost
     
  9. JanP

    JanP Registered User

    Nov 22, 2017
    10
    Wow, my Dad is exactly the same @Bunpoots. My Dad is 81 and I'm slipping into letting my life revolve completely around my Dad, which isn't fair on my hubby or kids. Hopefully Dad with start to accept the cleaner that has just started and then start to implement some additional things. I just hope he plateaus and doesn't continue to deteriorate at the same rate over the next few months
     
  10. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    I have not been on here for ages but have in the past replied to similar posts. We moved my mum into a home at from the sounds a similar stage to your dad . Of course she didn't want to go but we sold it as resbite as she needed a break . I have always thought that the move gave her a new lease of life , she was never sociable but she made some lovely friends and again my thought are a few more reasonable years . My husband went in to a Home 16 months ago , he is much better cared for and far less stressed than when he was at home with me . Because he can do as he pleases without anyone checking on him and giving him a timescale for his day , so far less stressed .Please don't consider having your dad with you , and don't feel guilty . I have had very positive homes who really do care .
     
  11. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,757

    @JanP

    Yes so familiar My dad eats at lunch time but if I am not there to prompt him to have a proper dinner it will be chocolate and yoghurts in the evening. I have a decent meal with him three or four evenings a week (I am putting on weight here) and also he does not go anywhere without me. As for money, he hasn't got a clue. I have to help him out when we go shopping and every time I go home he says 'Do I owe you anything' he would pay me over and over again if I let him and I have the same worries about strangers asking for money.

    It is a slippery slope this caring lark. It starts with trying to help and in the end your whole life can revolve around this one helpless person. It has crept up over the last 6 years from just trying to spend more time with him as he was obviously sad and lonely to him becoming totally reliant on me over the last six years.

    I was shopping with dad in Iceland a few days ago as that is where dad likes to go and the lady in front of me aged 70 or more was pushing her mum in a wheelchair, the mum must have been in her very late 90's This was a real wake up call for me and I could not help but think that could be me in another 10 or 12 years. It's very depressing so have a real good think about how much you are willing to do without help. I see you have got him a cleaner, that is a good start. Trouble with my dad is that he would clean up after the cleaner.
     
  12. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,757
    @Bunpoots

    Yes very similar, Yes dad would live on fruit, cake and biscuits and he could not make a meal to save his life. He can make coffee but that is his limit. I check his fridge and bin daily to see what he has eaten. I wish he would have someone in to help him but he won't at the moment. I suppose he doesn't need anyone as he has me. I may try the friend who needs a little cleaning job as it sounds like a good idea. I do realise it could be a whole lot worse as Dad is really lovely and never complains about anything.
     
  13. Bunpoots

    Bunpoots Volunteer Host

    Apr 1, 2016
    3,619
    Nottinghamshire
    My dad used to cleanup after the cleaner to start with @Duggies-girl . He doesn't anymore, just comments on how efficient she is (on a good day) or sleeps..

    Your comment about the old lady in Iceland rings a bell with me. My friend said "your dad's so fit he could live another ten years yet". Not a comforting thought! I'll be mid sixties by then. I'd like my life back...before I'm too old to enjoy it!! But I feel bad saying that. My dad is lovely at the moment, always polite and grateful. That makes it easier to cope - but it's still hard.

    My dad's not as fit as he looks, he has other health problems as well as the dementia and I hope one of them takes him before he disappears into mental oblivion. Peacefully. In his sleep.

    Don't we all?
     
  14. Yellowduck

    Yellowduck Account Closed

    Dec 11, 2016
    112
    Essex
    Mum has just turned 88 and still is at home. We have carers going in 4 times a day, and she has several visitors each week including cleaner and hairdresser. She does not know what day it is or time of day, other than every meal is breakfast. She can hardly walk, but just manages to get about the house with her frame, if she remembers where she has left it.
    Mum still knows who we all are, my wife and myself and our children, but cannot remember what she did 30 seconds earlier, or manage even the simplest instruction.
    We have spoken about a home for mum, but everyone we speak to have suggested we keep her at home for as long as possible, as once out of familiar surroundings, she will go downhill fast.
    We live about a mile away, and have had full cctv installed in every room (other than bathroom) so we can keep an eye on her, and if she forgets to put the phone back down, we can check she is OK without having to go round at 11pm at night only to find she is in bed and has just left the phone off the hook.
    We are fortunate that we probably only go round once a day to sort rubbish and buy food for her, but it is still draining.
    On a side note, every year, when ever it was my birthday, or my wifes, or one of the children, Mum would ring at some ungodly hour in the morning to sing happy birthday. We used to moan when the phone went, knowing it was Mum's annoying ritual.
    It was my birthday yesterday, and what I would have given for a phone call from Mum, just one last time....
     
  15. JanP

    JanP Registered User

    Nov 22, 2017
    10
    @Yellowduck
    It's such a sad illness isn't it. It scares me to read these posts and wonder what's ahead and how soon I'll be facing the same.
    I'm guessing your Mum has the carers helping her with dressing, washing etc? I'm lucky in that my Dad is still able to do those things himself (though wouldn't have a shower unless I prompted him). The cctv is a really good idea for peace of mind. I'll definitely look in to that. I absolutely want to avoid him leaving his home for as long as possible, it would be such a wrench as he's lived there for 60 years.
    Thanks for posting :)
     
  16. Yellowduck

    Yellowduck Account Closed

    Dec 11, 2016
    112
    Essex
    Mum can still get herself dressed, although slowly, She changes her clothes quite often during the day, as in her mind, she often thinks she has just got up. She will also wash, but only the bits she can reach. Luckily she is still in the main continent, although we have switched all her undies to disposables.
    The cctv is an absolute godsend, and we would not have managed for the past year without it. Mum does not even notice it now, and when we first had it put in we told her it was so we could look out for her if she fell or needed help. All of us, including our children (now adult) regularly check on her, via our phones, so it is probably never more than an hour or so in between 'cctv checks'.
    Dad built the bungalow 65 years ago, so it is all that Mum has ever known, although she has been on her own now for 30 years since Dad died.
    I do hope you can continue, it is hard, but there is a sense of relief that they are in familiar surroundings.
    I know there will come a time when mum will have to go into a home, unless another illness claims her first. Isn't it awful to say that I hope this happens....
    I do hope you and your other family can have some peace over the festive season.
     
  17. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,291
    SW London
    We had a similar situation with my FiL - except that he lived nearly a two hour drive away. He was stockpiling perishable food and then eating it and getting upset stomachs - walking to the previously familiar nearby shop and getting lost, frequently locking himself out, etc.
    We took him without question to,live with us. I had always been very fond of my FiL, but I will freely admit that at the time, we were completely clueless about dementia, and how difficult it could be 24/7. After about a year I could not cope any more, and it wasn't just me - we had two children still at school and coming up to important exams and FiL would often be up and down half the night, banging and shouting, demanding to go out at 3 am and waking everybody up. My Dh was also still working long hours in a demanding job. And I was frankly worn out - there were endless repetitions of the same question, and explosive, seriously scary rages - not every day, but often enough.

    We did feel very bad about the care home decision, but the situation at home was frankly untenable, and in fact he settled pretty well and quickly.
    I would just say that if you do take him to live with you, and subsequently find that it's just too difficult and exhausting, and the care home decision looms, please don't feel you have failed. There often comes a time when 24/7 care means just that, and it is often very hard to provide satisfactorily in an ordinary domestic setting.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.