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.

What can I do for the best?

Discussion in 'I care for a person with dementia' started by Aloysius, Feb 23, 2015.

  1. Aloysius

    Aloysius Registered User

    Aug 19, 2014
    23
    Posted before about my own suspicions re Mum's dementia. Well, now she's been assessed 21/30 on MMSE test, has had to have a CT scan and has been given an appointment at the memory clinic next month. (A friend will go with her; it's still in term time and I'm a full time teacher and Mum's only child)

    I visited this weekend just past on what has become a necessary monthly visit and round trip of 300 miles: to change her bed, wash up (she doesn't do any) and now to go through the fridge chucking out stuff. :(

    Anyway I've written to Mum's GP and received a warm if slightly guarded reply. It says that she's undergoing assessments and that with Mum's permission she'll share findings with me. Mum also showed me a letter detailing preliminary findings. Strangely (or not, I suppose) she seemed to be largely unaffected by reading that she had signs of cognitive impairment as well as a need to go to the memory clinic and just said how pleased she was that 'they're taking me off that tablet' (amlodipine)

    Mum lives in a semi sheltered flat and has a pendant but says she'll accept carers/help 'over my dead body' 'I don't need it, it's just I don't get time to do it all' She could afford care/help to the degree that she needs it now but is not a house owner and her pension is modest.

    I'm feeling so worried and couldn't sleep last night. Should I give up work despite being a single mum with a daughter going off to university in Sept... how will I cope with Mum's worsening condition? I can't move her nearer since live in small unsuitable rented place and she wouldn't go to Abbeyfield which I think would be a good idea. I doubt whether she'd cope with a move to other accommodation nearer me since it would be so disorienting and they don't usually take diagnosed dementia patients. I feel it's an insoluble problem and the distance is great!

    I needed to get it off my chest so thanks for reading my tale of woe :confused: but if anyone can point me in any direction (I am going round in circles) I'd be thankful....

    Aloysius
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,860
    Female
    Scotland
    Firstly do not give up your job. If your Mum will not accept help even when you explain its for your good to stop you worrying then you may well have to wait for a crisis to occur to get carers or a care home. It is all a horror story which ever way you do it but you have to think of the effect on your present and future financial and general well being.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,569
    Female
    South coast
    Hi Aloysius, This is a difficult time for you when you are just waking up to the possibilities of dementia and a whole load of "what ifs" are whizzing around your head.
    Dont try and run too far ahead, take it one bit at a time.
    Is there any way you could go with your mum to the memory clinic so that you can hear what is said and can ask questions? I know it wont be easy in your position, but it would help to find out what is going on. There is also the point that your mum may not go to the memory clinic without someone taking her.

    Keep posting - TP is here for questions and place to let off steam
     
  4. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I know to some extent to what you are feeling - when my Mum was first diagnosed I felt sick to my stomach. She lives with myself and my husband and adult daughter and we all work full time, except my daughter who's at University.

    I don't know what's going to happen in the future but I know I can't afford to give up work - emotionally and financially.
     
  5. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    Sort out the power of attorney as a priority for both financial and health if it hasn't already been done. It will save you a lot of grief regardless of the outcome of any diagnosis.
     
  6. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    'it's just I don't get time to do it all'
    The times I've heard that.
    Don't give up your job is my advice. You'll stop being you and turn into a handmaiden to dementia.
     
  7. flossielime

    flossielime Registered User

    May 8, 2014
    201
    I dont think in your position there is anyway you can give up your job.

    I got my dad to have a 'cleaner'. He would not entertain carers and was very anti a cleaner too. The only way I could get him to have the cleaner was to tell him that she was a friend of mine and her husband had lost his job so I was having her clean my house and his as she really needed to money. I through in the idea of a couple of kids too saying that they needed school shoes - laid it on thick to appeal to his good nature.

    The 'cleaner' came and started with a cup of tea and light dusting and slowly did a bit more each time. My loved her coming from day 1 - the thought of it was worse than the reality for him.

    My dad would loose track of the days - so she came every other day at first but he thought it was just once a week. Then when I introduced someone new it was to cover cleaner 1's holiday.

    When my MIL needed care too - we used the same approach and whilst she was more on the ball than my dad- to our amazement she went along with it too.

    Getting the first person through the door is the battle. Both my dad and my MIL accepted subsequent people without fuss.

    I think you have to get the right carer who will play along. For us no nurse type uniforms was important, all their carers wear their own clothes.
     
  8. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    I told my mum the doctor sent the carer in once a day to check she was taking her pills. I also told her the cleaner really needed a job and would only do the heavy work - floors, kitchen and loo. I paid them from her account as i got power of attorney to pay her bills. I also showed the gp the paperwork so i could be a point of contact. Get power of attorney and get help. This will take over you life bit by bit. Keep your job for your own sake. It will force you and social services to think of alternatives. Best of luck. We are all with you.
     
  9. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    Don't give up your job

    Aloysius

    I fully understand your situation of being an only child and living a long distance away as I also am in this situation with my mother.

    Whatever you do, don’t give up work. You have to consider your daughter and your own health and well-being first, physically, mentally and financially. If you go down you will be no good to anyone.

    If a friend is willing to go to the memory clinic with your mother there is no point you going, particularly as you are a teacher with set hours. The mental health team should fully brief you as next of kin.

    It is fortunate that your mother lives in semi-sheltered accommodation as I assume there is a warden there at certain times to keep an eye on her and that should ease your concerns somewhat.

    From my experience if somebody will not accept help there is no way that you can make them. This was the case with my father (divorced from my mother) who did not have dementia, but could not cope. He was fiercely independent and lived abroad. He never accepted help until the day he died.

    It might be a good idea if your mother moved nearer to you if you can find a suitable care home. However, if she will not go there is not a lot you can do about it. My mother got very disorientated when she was away from her home and familiar surroundings when we tried to get her to stay with us. It was quite a shock.

    I don’t suppose your mother has been appointed a social worker yet. They can be very helpful, but a word of warning. They are under pressure to save money. As time goes by and your mother’s condition deteriorates you might find that you are put under pressure to do more despite your job. Stay firm. Think of your daughter and yourself.

    You might feel at the moment it is an insoluble problem, but I do agree with marionq. It may be that you have to wait until a crisis occurs. Until it does there is no point worrying about something that hasn’t yet happened and making yourself ill. When it does occur I’m sure you will cope.

    Best wishes EM
     
  10. Laeticia

    Laeticia Registered User

    Feb 20, 2015
    3
    Wiltshire
    What can you do for the best?

    Sometimes events will dictate what happens. My father carried on in sheltered accommodation for some time after my mother 's death. I visited weekly. I was teaching and having to support myself, so could not give up my job. I arranged for someone to go in three times a day to take him meals, and made sure his fridge was well stocked. My attempts to get him to go to a day centre failed because he thought the Carers were condescending (they were!).

    Eventually, he became depressed and stopped eating. The warden called an ambulance and he spent three weeks in hospital. When he was better, they refused to release him into his own flat, and with a diagnosis of dementia, I had to find a care home for him. I found one near me, and fortunately it was a good one, and he was happy there for three years. It cost £36000 for three years. But Dad had enough money to pay for his care. Care will be provided if someone can no longer live on their own if such a diagnosis is made, I think the amount is £23,000 or less at the moment. The situation is far from perfect, and I know the agony you go through as you try to do the right thing. I wish you all the best with your situation.
    UOTE=Emily M;1064060]Aloysius

    I fully understand your situation of being an only child and living a long distance away as I also am in this situation with my mother.

    Whatever you do, don’t give up work. You have to consider your daughter and your own health and well-being first, physically, mentally and financially. If you go down you will be no good to anyone.

    If a friend is willing to go to the memory clinic with your mother there is no point you going, particularly as you are a teacher with set hours. The mental health team should fully brief you as next of kin.

    It is fortunate that your mother lives in semi-sheltered accommodation as I assume there is a warden there at certain times to keep an eye on her and that should ease your concerns somewhat.

    From my experience if somebody will not accept help there is no way that you can make them. This was the case with my father (divorced from my mother) who did not have dementia, but could not cope. He was fiercely independent and lived abroad. He never accepted help until the day he died.

    It might be a good idea if your mother moved nearer to you if you can find a suitable care home. However, if she will not go there is not a lot you can do about it. My mother got very disorientated when she was away from her home and familiar surroundings when we tried to get her to stay with us. It was quite a shock.

    I don’t suppose your mother has been appointed a social worker yet. They can be very helpful, but a word of warning. They are under pressure to save money. As time goes by and your mother’s condition deteriorates you might find that you are put under pressure to do more despite your job. Stay firm. Think of your daughter and yourself.

    You might feel at the moment it is an insoluble problem, but I do agree with marionq. It may be that you have to wait until a crisis occurs. Until it does there is no point worrying about something that hasn’t yet happened and making yourself ill. When it does occur I’m sure you will cope.

    Best wishes EM[/QUOTE]
     
  11. Aloysius

    Aloysius Registered User

    Aug 19, 2014
    23
    Thanks!

    Thank you to everyone who replied; it really helps to have advice from people who know the trodden route. I was hoping to see my GP this morning but there was a locum instead. He was nice enough and gave me some sleeping tablets. He also said to return for anti depressants should I continue to feel grim. I guess I just have to take canary's advice of

    'Dont try and run too far ahead, take it one bit at a time'

    So many of you advise me not to stop working! I am 55 so could take early retirement (and poverty)but I'd rather not. I'm just worried that I won't be able to give the job the concentration and time it deserves/requires. A colleague asked for a day off to take his terminally ill elderly father to an appointment (he also lives far away) and was asked 'Is this a one off?' Hollow, mirthless laugh; there's no provision for 'elderly leave' as there is for maternity leave but there should be.

    Thanks again for your kind replies -I'll be on again, I don't doubt. Thank goddness for TP
     
  12. Aloysius

    Aloysius Registered User

    Aug 19, 2014
    23
    Thank you!

    [/QUOTE]

    Thanks so much for your advice. I found it really helpful and encouraging since you're right, I have to wait for a crisis really, rather than mull endlessly and miserably over possible outcomes!

    Mum hasn't been appointed a sw yet but I'll hopefully be able to travel down in the Easter holidays and see him/her.. My daughter suggested taking photos of the flat before I clear up : it's so hard to leave it festering even though that might be 'evidence'.

    Aloysius x
     
  13. Emily M

    Emily M Registered User

    Jan 20, 2015
    178
    Thanks so much for your advice. I found it really helpful and encouraging since you're right, I have to wait for a crisis really, rather than mull endlessly and miserably over possible outcomes!

    Mum hasn't been appointed a sw yet but I'll hopefully be able to travel down in the Easter holidays and see him/her.. My daughter suggested taking photos of the flat before I clear up : it's so hard to leave it festering even though that might be 'evidence'.

    Aloysius x[/QUOTE]


    Hello again Aloysius

    It sounds that there is not a lot of empathy in your school. You don't say if you are in a public sector organisation. If you are there should be policies in place (some national) regarding compassionate leave which would include your situation. A private sector organisation should also have policies. Would the school be willing to accept unpaid leave and pay a supply teacher to cover? Also, would temporary reduced hours be an option to cover a crisis?

    I have never met my mother's SW and all the correspondence has been done on the phone and through e-mails. (Mum lives with her husband though he is finding it difficult to cope and I think a crisis may be brewing up).

    Sounds like a good idea taking photos, though the SW should do regular visits. Would your mother accept a carer coming visiting and taking her out, etc? If so it might be the first step towards a home help. However, I have found that what we might consider an unacceptable way to live may be different to the SW's idea. I guess they see a lot worse! Also there is the case of what your mother desires and her "free choice". To the SW it is a question of when is it right, or not right, to intervene. For you own survival you may have to take a mental step back on this aspect. I am sure things will become clearer when you speak to the SW.

    Keep posting if it helps. It's good to get the opinion of others and if nothing else it "gets it off your chest!"

    EM
     
  14. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    Aloysius - you say you are worried about not being able to concentrate on the job. I found the exact reverse to be true - having my job to concentrate upon and take my mind off dementia has been a lifeline. Caring for someone with dementia in my experience is not rewarding - there is no improvement, there is no gratitude, there are frequent complaints. You cannot even made the cared-for-one happy. Before you take a drastic step you may regret see how it goes, see what transpires over months and even longer. And also consider part-time work if that seems a compromise that would appeal.
     
  15. jimbosmith

    jimbosmith Registered User

    May 10, 2013
    77
    Aloysius

    Sorry to hear about your situation.

    Do you have any other children other than your daughter who is off to uni?
     

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.