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. Tina

    Tina Registered User

    May 19, 2006
    Hello all,

    need to get a few things off my chest tonight. After a really positive visit with my aunty nearly two weeks ago (she'd had another stroke and lost more vision than previously, didn't help her VD either), there has been rapid deterioration.

    Had a phone call from my uncle tonight, saying Aunty Jean is very weak, has basically stopped communicating and is taking very little food. The doctor is in and out of the house (she's still at home, apparently no immediate need to have her in hospital and Uncle Harry wants her to stay at home for as long as poss.) twice a day to check on her, nurse coming in too, cousin staying there as well, so Uncle Harry has support and isn't alone. I thought ok, hang on, could this just be a period of general not-being-so-well, due to the heat, etc? Not sure. Doc not sure either. When this started, my uncle took aunty Jean to hospital, they checked bp, blood, urine, did scans, etc. Nothing immediately physically wrong with her. Not sure either whether she had more mini strokes. My uncle isn't one for dramatising, he is quite matter-of-fact about it, but I know it's breaking his heart. Bless him, he's doing a fabulous job. He said whatever will be will be and he's determined to make her as comfortable as possible. He also said the deterioration was quite marked. She's stopped walking, is in the chair or in bed a lot of the time, sleeps a lot. I said is she taking fluids - yes, she's drinking ok, doc is making sure she's not dehydrated. Not sure what kind of meds she's on at this stage, might also be having an effect on her. Need to ask uncle that when I phone him tomorrow.

    I'm sitting here at home, far away and have all sorts of silly things going round in my head. I'm ready to go over there if they want me, but I won't just descend on them. My uncle wouldn't feel comfortable with that. And I don't want to make the situation more stressful for him than it already is. I also have family here to look after and consider (elderly grandparents, but not AD or dementia, just a little help here and there as they get older and find the everyday jobs more difficult.) and a demanding job, but as I'm writing this I'm realising it sounds a bit callous. Which it isn't meant to. If needs must, I'll drop everything here and get on the next plane, nothing is so important as family and being there when necessary. I'm not happy sitting here, waiting for whatever to happen, but I'll wait another few days. If I get an overwhelming gut feeling I should be over there, then nothing will stop me. At the minute, I know my uncle and aunt are not alone, my cousin is there who is their next of kin whereas I'm "only" a great-niece, there is lots of support for them, and I'll hang on till I have another little bit of information.
    I've sent a little note and I asked Uncle Harry if it was ok for me to ring every day and he seemed quite happy for me to phone any time.

    Call me queer, but I did have some sort of funny feeling when I last saw them two weeks ago. Can't describe it really, it was just something inside me telling me show them that you care, show them you love them both, show them you'd do whatever they'd want if only they asked you for help, show them there are people thinking of them and wishing them well, show them they're not alone.
    I was originally due to go back in September, but have scheduled another visit for mid-August. If I need to go before, I will of course.

    Maybe I'm overreacting and the situation is not as bad as it sounds, maybe it is just a difficult patch and she'll "recover" in the sense that she'll get some of her strength back and improve at least a little bit. At the same time, I know that VD and stroke history don't go together with improvement and recovery.
    Then again, I'm trying to look for the positive things, the happy memories, the good days and telling myself ok, it's not good, but she's still here, she's always been a fighter, never one to give up, determined and positive. But I just feel like crying at the moment.
    Day by day, as Norman says. Maybe tomorrow will be a better one.

    Thanks for listening and letting me ramble. It's Saturday night, we should all be down the pub.....:) :(
  2. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Tina,
    Sorry about Auntie Jean. Just a thought. Have they given Auntie something like Rehydrat, if she is not eating much and probably not drinking as much as she should be, her body salts may be out of balance. On a couple of occasions mum has had days where she has been very sleepy, unable to sit up, but having got a powder down her, she has pulled round. This may not be the case with Auntie, but wouldn't do any harm.
    If it is further strokes there may be a little improvement, before it stabilises again.
    I believe in funny feelings, though they are not always right.
    OK to cry Tina, but then try and let your mind rest. Auntie and Uncle are both safe and surrounded by people who love them, and your love is holding them as well.
    Let us know how Auntie is tomorrow.
    Love Helen
  3. maria29al

    maria29al Registered User

    Mar 15, 2006
    I hope today is more positive for you.
    Try not to beat yourself up over it all...you are doing what you can and caring very much.


  4. Tina

    Tina Registered User

    May 19, 2006
    Going to see Aunty Jean tomorrow, hope I'll get there in time. She had a massive brain haemorrhage and stroke, is in hospital unconscious and unlikely to wake up again. Docs say it might be days, it might be weeks, but they don't know. I'm going over there sharpish and hoping I'll see her once more while her hands are still warm. If something happens then between now and my next visit, at least I know I'll have been there.

    So strange to think I had coffee with her and uncle in town two weeks ago, I'll never see her walking about again, or in the car with my uncle driving somewhere, never hear her voice again. I'm really glad I had those visits such a short while ago. I'm already trying frantically to hold on to all the memories, recall the conversations, the things we used to laugh about so that I don't forget anything.
    Am heartbroken even though it wasn't unexpected. The good thing is she isn't alone, there's family with her, she's not in any obvious discomfort or distress, and she's unaware she's in hospital - she hated the very thought of having to go in, it was her greatest worry. She gave so much, was always positive and strong, loved company and a laugh and a good chat, I had endless encouragement, patience and kindness from her and she taught me a lot....
    God, I sound as though I'm already writing her obituary....she's still here, for Pete's sake.

    Thanks for letting me ramble.
  5. Amy

    Amy Registered User

    Jan 4, 2006
    Your aunt sounds to be a wonderful lady. Pleased that she is in no pain now - mental or physical. Thinking of you.
    Love Helen
  6. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Tina, anyone can write an obituary - ony those who love and care write the eulogies that you and your family can..... throughout a life, and beyond....

    You already know my love, prayers and thoughts are with you .... share what you need to, when you need to .....

    Love, Karen (TF), x
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    Only this year my untie had a
    so I feel a bit tear full when reading your post , but thanks for posting .

    when you said
    don't even go there ,because it did not sound like that one bit , It sounded like someone that Cares
  8. mel

    mel Registered User

    Apr 30, 2006
    Hi Tina
    i've only just read your thread...
    hang in there
    Thinking of you
  9. Tina

    Tina Registered User

    May 19, 2006
    This is so hard!

    But it doesn't matter, I got to the UK in time, aunty is still here, looking tired, drained, but peaceful. She's getting weaker by the day, but even though this is so sad and it's breaking my heart, there's also a feeling of peace and serenity, as if she knows there's something better ahead of her. Still no idea how much longer she'll last, docs can't say. She's unconscious, on a drip for fluids but htere's no medication and my uncle and cousin decided they don't want a feeding tube. She's supposed to go quietly and gently when she's ready. Who knows, she might be here for a little while yet. I've had a bit of time on my own with her, to tell her I love her and how grateful I am to her for everything. Silently she was probably saying to me "Be strong and don't cry so much, remember the good times. Keep an eye on your uncle when you come over on your regular visits. Take him for a cup of tea and a walk if the weather is nice. Also, make sure you finish your part-time degree and continue do your best, in your job, in uni, at home. You can't do more than that, just keep going and don't worry, it'll all work out in the end." Which has always been wonderfully reassuring to me whenever she said it in the past.

    The nice thing is I went for a walk with my uncle today, not much talking, just company. I held his hand and he talked when he wanted to, I tried to give him some courage and just be there with him while my cousin and my aunty's sister and brother were in hospital with her. So we're taking it in turns to sit and watch over her, day and night, but I will have to go back home to work and to my other family at the beginning of the week. It's going to be one of the hardest good-byes I've ever had to say so far, but I'm glad I can have these few days here now. Maybe she knew I was there.

  10. Áine

    Áine Registered User

    I'm sure she'll have known you were there Tina. I think people take in far more about what's going on around them than we think they do. And she'll know she's loved.

    Thinking of you and we go through difficult times. Take care of yourself.


  11. Amy

    Amy Registered User

    Jan 4, 2006
    Thinking of you Tina. Auntie sounds to be dying surrounded by love, I am sure that she can feel you all holding her safe.
    Take care.
    Love Helen
  12. Tina

    Tina Registered User

    May 19, 2006
    Well, the above needs to be reviewed a little. Aunty is hanging on - whether it's good or bad, I don't know. I keep thinking it would be the best if she could slip away silently and quietly. There are some reactions, but I don't know if they are subconscious or not. She returns pressure when you hold her hand, her eyelids flutter as though she was trying to open them but can't muster up the strength, she whimpers and moans a bit now and again, but seems to be soothed by our voices and touch. Her right side of the body is paralysed, she's incontinent and all she can utter is little groans and sounds. God knows what's going to happen or how long this is going to be.....blood pressure, heartbeat, liver, kidneys, all fine.

    I sat with her and my uncle and my cousin through two nights which were very peaceful and quiet. I managed to get a lot of things off my chest and tried to give her courage for what lies ahead of her.
    The docs seem to think she MIGHT wake up or at least have phases where she's "more conscious" than others....but I guess that's not in our hands.

    I had to say goodbye to her last night because I had to go back home, and it was one of the hardest things I've ever had to do...I know, I know, I've told her all I wanted to tell her, I felt she knew I was there, it was peaceful and quiet and there are all the happy memories and the wish her suffering might be ended before she lingers on and on and on, which would be just as hard to watch. Still, there is this lump in my chest, and I cried buckets last night. She'd have told me to pull myself together at some point, I'm sure....;) , so I did. Until....my uncle and cousin gave me her gold necklace which my uncle had bought her for their 40th wedding anniversary. Apparently she had said, when she was still capable of making decisions, she wanted me to have it, and to give it to me before she died. So when she went into hospital, my uncle took her earrings and the necklace off her, but she still of course has her wedding and engagement ring. He gave me the necklace last night, and I'll always treasure it.

    Amid the sadness I've taken things home which no one will ever take away.... support in difficult times, memories to hold and to treasure, knowledge that there is love in abundance and that my aunt and uncle and cousin appreciated the fact that I was there. I'm relieved I managed to get there, and I know the lump in my chest and throat will go away in time.

  13. Amy

    Amy Registered User

    Jan 4, 2006
    Just wanted to send my love and a <<<hug>>> Tina.
    Hang in there.
    Love Helen

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