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.

  1. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    so Dads got his first UTI in the care home, not bad considering he’s been there 11 months!
    I went in today to find Dad unresponsive & weak. He’s also been aggressive to the carers, maybe it’s the UTI or maybe it’s the dementia. I tried to feed him but it was pointless, so the carers & I got him more comfortable lying on the bed.
    Couldn’t get Dad to open his eyes or drink, even the care team were worried.

    So I lay down beside him after asking family to come it & held his hand; just like I used to snuggle up when I was a little girl & he was dozing in the armchair after work.

    Imagine my surprise when he leaned to kiss my head & blow on my hair like he did when I was a child! Not once but 3 times! I was in bits... my Dad was my Dad for a while. He woke up, opened his eyes, eat & drank, chatted & then the glimmer of recognition faded.

    So painful & precious, I don’t know wether to laugh or cry.... my dad actually recognised me for just a few moments; we chatted.

    I’m numb with the rollercoaster of emotions....
     
  2. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    394
    Sheffield
    It’s lovely when you get them back for a while. My OH occasionally has thee moments when he seems like my husband again sadly it doesn’t last long.

    I want to bring him home its lonely without him but not sure if I could cope his moods are so up and down. He might not know where he is.
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    No I honestly think that though it breaks your heart that he’s in a care home, the reality of moving him back would be worse than when you made the initial decision.

    So yesterday I spoke to a lot of staff, I sat & held Dads hand for 7 hours! The outcome of that was I found out that Dad has been aggressive towards the staff a couple of times. Half nelsoning one, & lashing out at another male carer.

    So the care home haven’t made a big issue of this & have just gently made me aware that this has happened; & said its out of his natural nature & they will monitor his behaviour & wellbeing.

    Dementia changes our loved ones beyond recognition at times. Grieving & loneliness is a difficult path but the reality of having your PWD home would be returning to that situation you faced leading to the decision to seek care.

    Join, join, join was the saying on the forum!
    Join everything you can & go three times to each before thinking about not going if it’s not to your liking. It actually should be 7 times but that seems a daunting thought!

    I myself am an artist / crafter & it’s my lifeline. I pick up & get so absorbed that hours fly by. Evening classes are an option, also loads of adult education classes are on during the day in all local areas. I started Spanish classes until my own health made me stop! Yes I was useless, but it was fun & social, like wise swimming ( pool burnt down! You really couldn’t write it!!!) & Pilates ( lived it but my M.E meant I was too knackered to drive back!)
    So art it is! Yes I do sell my work at a monthly event, but the therapy & balm it provides for my soul is immeasurable.
     
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    So today is another day peeps!
    Whatever it brings we are all in this together.
    Ooooo.... inner jukebox playing song
    “All together now” definite blast from the past - 1990’s.
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    Today I’m going to have a chat with the care home & see what’s what, going to wait until mid morning. At the moment I’m sat in GP surgery next to an open window trying not to breathe in too many germs!

    Hopefully it will be a quick in & out - hi I’m fine blood tests ?
    Fab
    Out!!!

    That’s me hoping!!!!
     
  6. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    So The lovely GP has been & pain patches prescribed, Dads loving his cuddles. So I’ve had a cup of tea & the gentle snores are back. Then he wakes & cuddles required again!
    Little glimpse of Dad again this afternoon but his poor mind & body are exhausted.

    Cuddle duty calling folks.
     
  7. Mandy76

    Mandy76 Registered User

    Jul 25, 2019
    10
    Your poor poor dad, what a terrible shame for him. He obviously knows you are there with him though and that will help to comfort him.

    You are doing everything you can for him.
     
  8. kindred

    kindred Registered User

    Apr 8, 2018
    2,202
    . OH that is so beautiful. With love, kindredxxx
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    So Dads changed, washed & fast asleep.
    Waiting for my lift home,
     
  10. Mouse2014

    Mouse2014 Registered User

    Mar 9, 2014
    42
    Your posts are sad but equally uplifting. Your love for your dad so very evident...

    The highs and lows of the rollercoaster of feelings is sadly all too common.....tiring, painful, draining, depressing but a path we’ve all taken and will take the journey with you and your Dad.

    All my love and hugs through this difficult time.. it’s such a devastatingly cruel illness,, xx
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    I hope to find the positive in life’s darkest days, I had a discussion with my daughter last night about how there is beauty in all stages of life. It’s hard to find positive aspects in amongst such a destructive disease, but my Dads favourite tune when life gets grim “ always look on the bright side of life”
    Him & his workmates used to sing this in his workplace .... all the verses!!!
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,598
    Kent
    I`m not surprised you were in bits. It does show how much the true person is still there no matter how much it is masked by the dementia.
     
  13. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    Last night before I left one of the care home residents came into Dads room concerned about my welfare. She gently hugged me & talked to me about how I must feel & not to be too sad. This lady’s dementia has taken so much of her but the loving caring mother is still dominant. I sat with her & talked her kindness & empathy touched me to my heart. This lady held me the day before as she was worried about me. No matter how destructive dementia is there are lovely moments to be found in the darkest of days. It gives me hope & strength for the days to come.
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    It’s raining... how apt!
    I’m drained & today have to tell my Mum my Dads poorly. Mums cMHT rang last night while I was cuddled up with Dad.
    Consultant verdict......
    So my Mum is in late to end stages of “mixed dementia “ you name it she’s got it!

    Having to balance Mum & Dads best interests verses life!!! Ah a no win situation ,
    Magic wand anyone....

    Need to get Mum respite near me ASAP.

    Please let the fairy godmother of kindness & mini miracles sprinkle some fairy dust this morning.....
     
  15. TNJJ

    TNJJ Registered User

    May 7, 2019
    470
    Sending you hugs this morning.I hope you manage to get some respite for your mum.
    Make sure you take care of you and the leg..
    (((hugs))))
     
  16. spynage

    spynage New member

    Apr 12, 2018
    6
    UTI's are very common in care homes and avoidable. My sister was constantly complaining about the standard of our Mum's personal care in the home. She is a bit challenging and fights and screams during PC. My sister kept finding faeces in her private parts from over night PC, in several of the homes we have been to. My mother has been in over 4. She is cared for at home now. We have funding for a live in carer and her standard of personal care is much improved along with her general health and well being.
     
  17. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    I cannot fault the CH for the excellent care Dad has & still is receiving. Sadly the GP thought it might be a infection of some kind with his behavioural change & rapid decline. Antibiotics were a precautionary & sadly dementia & age is the issue.

    The home is caring & patient with all - residents & visitors alike.
    My father is spotless, & I couldn’t even with carers in place at home provide the high quality of care; I’m sorry that you had negative experiences
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    So I’ve arranged respite care near Dads care home- it’s expensive but they will treat Mum like a Queen.

    I’m drained by all of this mornings phonecalls & chasing.

    Explaining to my aged mother that Dads unwell over the phone & explaining arrangements for( respite care ) a little holiday near Dad so she can visit is heartbreaking. This is the first time I’ve arranged for Mum not to stay with us.
    I can’t physically care for her & getting anyone to fund care out of county for respite seems to be unimportant at this moment in time.

    My parents welfare & wellbeing is the most important issue. Their best interests.....
    Mums respite care it’s like a five star hotel, & I shall join Mum for some meals & be the supportive daughter she needs as her husband fades away. Those visits are going to be heartbreaking to witness.
    Selfishly I will be able to come home & grieve for what is cruelly taken by dementia, leaving my Mum to be pampered, & nurtured by the staff providing respite.

    Trying to make a positive experience for all concerned - I want the dignity & peace Dads found to continue until he gets his wings.

    Balancing both parents dementia needs is tricky, but by dealing with each aspect of care I hope I have achieved something that is a gentle transition for all. I know life’s not perfect but I’ve done my best ...

    So to all the lovely folks on this cruel dementia path at whatever stage you are I hope you to find the strength & support that this forum has given me on your own journeys

    Thank you for all the support &messages you all have made this a less lonely path, I am forever grateful...... sending love & light to you all on your dark days
    Xxx
     
  19. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,173
    So Dads enjoying his new DAB radio, classic fm & cuddles. Found cyclamen today in a pot; much joy (him)at the colour & had to elevate the pot so they could be seen from outside.
    Autumn flowers & a new cushion & matching throw for his room; brought great pleasure. He announced he has the smartest house in the village! Along with new pj’s, thermal socks & a warm brushed cotton shirt he’s going to be one plush gentleman.

    Care plan & meds’ are slowly getting sorted.

    Going to apply for CHC funding, Dad requires two to care & lift now, the lovely home are helping me to fill in the forms. I am so lucky to have such supportive people in my life at this moment in time.
    I am kissed & cosseted by the other care home residents, like mother hens clucking over one chick; it makes me smile & it makes them happy - all the months of playing the fool & talking to the residents & carers has meant I now have a large extended network to support me & Dad.

    Truly feel blessed... sad but thankful that this lovely environment & care is part of Dads journey.
     
  20. canary

    canary Registered User

    Feb 25, 2014
    10,578
    Female
    South coast
    Oh, DofD. Ive been away for a few days and only just found this thread.

    You are arranging everything with such care and compassion.
    (((((((((((((((((((((((((((hugs))))))))))))))))))
     

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