1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Zooey

    Zooey Registered User

    That describes exactly how I'm feeling at the moment. As though I've just opened my eyes to find myself at the top of the biggest, scariest big dipper in the world. My Mum's Alzheimer's is only a small problem at the tip of her medical iceberg and I always thought it would be her kidneys that would get her in the end. AD was not a road I wanted her travelling too much and it seems to be an easier way out. I did think we might have another good year though, especially as we moved her into an excellent care home only five weeks ago. Sadly, I don't think it was meant to be.

    She has been refusing all food for over a week and is hardly drinking either. After two visits spent battling with her to take something, I have now informed the staff that I am not prepared to spoil what time we have left.

    There is one good thing about roller coasters though. The views can be quite breathtaking.
     
  2. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    I cannot say anything suitable except how sad I am for you.
    To offer condolences is all I can do.
    Hope tomorrow is better.
    Keep your pecker up! Best wishes Jan
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Oh Zooey, I'm so sorry for you. It must be heartbreaking to watch your mum decline in this way.

    Can the home give her Fortisips to drink? I know that is what happens in my husband's home when people will not eat. The kitchen also make puddings and jellies with Fortisip powder, sometimes people will eat those when they won't eat anything else.

    I think you're right not to turn your visits into a battleground. Yopu and your mum both deserve some peace, particularly if she has not long left.

    And who knows, she may just relax enough to start eating again, you never know.

    With love and much sympathy,
     
  4. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Zooey,
    My heart goes out to you and your Mum at this difficult time. I too think your decision is the right one. As Hazel said:

    I think you're right not to turn your visits into a battleground. Yopu and your mum both deserve some peace, particularly if she has not long left.

    And who knows, she may just relax enough to start eating again, you never know.


    What is happening about your animals while this is going on? Or are you still coping with them and your Mum??

    Thinking of you and sending caring wishes.
     
  5. Zooey

    Zooey Registered User

    Thank you all for your kind thoughts. Yes - not only am I still working four days a week, but we have the zoo to look after AND we're having to clear my Mum's old place PDQ. (Her landlord is sympathetic, but will continue to take rent until we hand over the keys). I had to miss an old friend's 50th birthday party yesterday - we'd already booked half a day's leave and it was a more sensible use of the time. The alarm goes off at 5.20 every morning and we never finish the animals before 8.00 at night - often much later. Then we still have to get ourselves dinner.

    The good news is that my Mum is hanging on in her own fashion. She hasn't had much of an appetite for well over a year, but she's refused all food for the past two weeks. However, she is starting to drink more and will take soup and milk. She wouldn't touch the Ensure drinks, but I've asked the staff to start sneaking a little into the milk over a few days. They could also make a milk shake with a banana and maybe a bit of added cream. There is so much more you can do with milk. Before she was only accepting Fanta lemon and that's not easy to find at the best of times.

    I'm still on the roller coaster, but I'm strapped in well and the seat is comfortable. Oh... and I spoke to her new doctor today. She's been very good tracking down my Mum's history, but was unsure about the hospital's decision. They'd actually never spoken to me, but I explained that at nearly 85 I didn't want my Mum to have an operation and that taking her AD into account, I thought dialysis would be cruel. I love my Mum and I don't want to lose her, but I also love her enough to let go. I think it's a lesson I've learnt from my animals :)
     
  6. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    You may be on a roller coaster but, my gosh, you seem so 'well balanced'!!

    There is little to say except we are thinking about you - what an incredible job you are doing. It seems that working with animals has given you a wonderful view on life.

    Hope you Mum is 'ok' and that her care is as you would want it.

    Take care of yourself - you too have your limits.
    Best wishes Jan
     
  7. Zooey

    Zooey Registered User

    Thank you Jan, but I'm about as far from "well balanced" as it's possible to get tonight. My Mum has now refused food for over 3 weeks and is very weak indeed. I found visiting yesterday difficult, but at least my husband was there. She was worse tonight and when she did speak, all she did was apologise and say "I'm dying". How on earth do you cope with that?

    I've never been a tactile person. It's not a criticism, just a fact. I don't think my parents cuddled or even touched me after a very young age. I can't do the hand holding, hair stroking thing, so I just sat in my Mum's room tonight and tried to make a one way conversation. Talking about my life didn't help and she normally loves to hear about the animals. I tried old times, but that seemed to make her even more upset. I stayed sane long enough to speak to the nurse and now I've disintegrated into a sobbing wreck. I know my Mum didn't have long left, but her kidneys should have had another 6 months to a year. I know all the reasons she may have started refusing food, but I still can't cope with the anger I feel at what she's doing. She's clearly frightened and I feel I ought to have stayed longer, but I could only hold it together for so long.

    Sorry for rambling. I read your posts during the day when I'm at work and I'd dearly love to reply to some of them. Sadly our system still won't allow it and I rarely get the time at home. Anyway - I really must go and have a bath. My make up is streaked all over my face and my hair is a mess. I guess we're back to that piece of string again. I do hope ours is a short one.
     
  8. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear Zooey

    I'm not a tactile person either, I don't remember cuddles from my mum - a hug from my dad every now and again maybe, as a laugh. No hair stroking or hand-holding, mum would think it was ME who had dementia if I did that. That's perhaps why you have the animals, they give you that physical bit that people say we all need, but to be honest even my cats annoy me these days. And don't mention the husband!

    So you are who you are. That doesn't mean you don't care, but it does make visits difficult when they revolve around pure conversation and there ain't any.

    Your mum sounds as if she knows the end is near, and doesn't want to prolong it. How sensible (? sorry, wrong word, can't think of a better one) of her. There is no point in her battling when she isn't comfortable or happy, just to hang on for a few more months. I think if she has made the decision to give in, it is a very brave one on her part. I believe my dad made the same decision with his cancer, but he seemed to make it overnight and was gone the next morning when no-one expected it. I know he was frightened from the phone call we got from the hospice, and I'm sad we weren't there with him, but he made the decision and it did save us all watching him suffer for many more weeks. And him, of course. In fact, despite having one of the most painful cancers there is, he didn't really suffer pain at all, which was a blessing to us all.

    I've just deleted a load of stuff, decided it was not appropriate.

    Now my mum has AD (didn't appear to have it before dad died in 2004, though he said she did). She misses him like mad, he was her life. She was okay (not happy, but okay) while she could stay in the little house they shared for 55 years, and look after it, but now she is in a home the life has gone out of her completely. She too has kidney problems, and actually said "Oh good, it might bump me of

    Anyway, regarding you not being able to hold out, well I am not surprised at that, I was the same with my dad, I could stand so much and then the thought that he was dying meant I couldnt cope - and he once described me as "the strong daughter"!

    Well, you can only do what you can, Zooey, to my mind you are doing great, no harm in being a sobbing wreck now and again, and not surprising given the stress you are under.

    Maybe your mum will recover to live a bit longer, you will have to wait and see. Keep up the visits, they will be important to her, even if you can't stay long.

    Keep us posted, we are all with you.

    Love

    Margaret
     
  9. Doreen99

    Doreen99 Registered User

    Jan 12, 2008
    66
    Sheffield
    Dear Zooey

    you are going through the mill and the mixture of emotions you're feeling is exhausting, no wonder you need to have a good cry every now and then.

    I know what you mean about tactile - my relatioship with my MIL was never a touchy feely one, except when she gave me the occasional slap on the bum if I was bending over and she said the target was too big to resist!

    But when she started getting really confused, she took to grabbing my hand with both hers and clinging on to me. I found that if I just sat and stroked her hand - much like I'd stroke the cat - it seemed to soothe her. Perhaps you could see how your mum reacted if you just put your hand on top of hers?

    When my mother was dying of cancer, I can remember how angry I was with her, coupled with how guilty I felt! It's very confusing, but strong emotions are never easy to cope with and I found it better to go with the flow, rather than trying to repress them entirely. I had few good rants at my partner, who just let me get it all out of my system, and it did me the world of good.

    Take care

    Doreen
     
  10. Zooey

    Zooey Registered User

    Thank you for your replies Margaret and Doreen. They mean so much at this time. I didn't sleep much, but the cats seem to understand and I had them in shifts all through the night.

    Feeling a tad stronger this morning, although I think seeing my Mum's fear and distress will haunt me for a long time. Apart from my husband, there is no-one to share this journey with me and sadly my Mum has no relatives or friends who could visit either. I was chatting to a dear lady who works at the vets and she lost her sister at Christmas. It was expected and the whole family gathered round and took it in shifts. There were always at least two of them and I really do long to have the comfort in that.

    Yes - I did manage to hold my Mum's hand last night, but it doesn't come naturally and oddly enough I'm just the opposite with my pets. I guess it's something we all need and if it's denied in one way it will find an outlet somehow. It's incredible how the cats understand my feelings. I trapped a tortie feral a couple of years ago and she's been following me round like a shadow for a couple of weeks. Last night and this morning she was on my pillow and even crawled under the covers for a cuddle (and in fact, she's on my lap right now). At least when this is all over I know I must carry on for their sake.

    Oh... and I do have some thoughts about your problems. Particularly with your Mum Margaret. I used to get skin problems and I'm sure it was all down to stress. Not much you can do about it as she clearly can't live at home, but it might save you hunting around for another diagnosis.

    Anyway - back to the litter trays and I have a diabetic cat who needs her insulin.
     
  11. Zooey

    Zooey Registered User

    Over my dead body!

    You think I would have finished battling with the local authority by now, but I found myself on the phone this afternoon insisting that my Mum isn't moved into hospital. I really like her care manager, but I know his boss has been involved since the care home asked if they could have more funding for nursing. My Mum is now oblivious to what is going on, although her eyes were open tonight. I would say it isn't a coma just yet, but probably not far off. What on earth are they going to achieve by hauling her to a hospital she doesn't know with unfamiliar staff, lots of noise and probably bright lights shining most of the day and night. Call me cynical (and I'm normally the most innocent and trusting of people), but it would save the local authority a few hundred pounds and it's getting near the end of the financial year.

    If the doctor feels it really would be in my Mum's best interests, then I will certainly listen, but what can they do apart from putting her on a drip? That's only going to prolong her suffering - it's not as if she could benefit from visitors in her final days as there is only me. Don't get me wrong, of course I don't want this to go on for very long, but my decision is based purely on what's right for my Mum. It comes to something when you have to battle to allow a loved one to die in peace.

    Anyway - that seems to have helped me deal with things and I'm back to being "well balanced" and even a bit serene. It's her 85th birthday tomorrow and I bought her a radio that will play (and charge) her iPod. That means she can have her favourite music 24 hours a day. I haven't a bad thing to say about the staff at the home. Even though she is still on the residential wing, they are giving her the best care possible. I noticed a birthday card from my cousin had been opened and was sitting beside her bed. One of the girls said she puts music on for my Mum throughout the day. She may only have had a few short weeks in the home, but it was absolutely the right thing to do.
     

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