1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    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.

A lifelong friend and me

Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.

  1. AliceA

    AliceA Registered User

    May 27, 2016
    2,245
    This is a tough stage, Pale. In my case my own health has deteriorated so I am trying to put in place possible solutions. It is a mine field. I have found a place that ticks all the boxes, we could not self fund for long.
    I have made a case for the one we like although out of county is cheaper, well just!
    This is for respite but I have told Social Services it could turn in to permanent should I be unable to continue because of my own health. The question of property is difficult, it cannot be touched while I live here, but my income would not cover the bills. It is very small so cannot downsize, we have done that!
    The financial assessment was tough, the only expense set against income was a proportion of the Council tax. However perhaps it is different for a permanent arrangement. I am trying to allow for the fact there is no public transport to the in county care homes. Good luck.
     
  2. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West

    Hi Alice

    I'm in a similar position as you with mum. When dad died I had thought he had savings left, when I got to the bank there was zero left. His only saving grace for his funeral was his policy, which was utterly spent on coroners hearing, funeral costs and finally headstone, which I had to pay half to plus an extra solicitors fee because my brother couldn't accept dads Last Will and Testament -written ten years before his death

    Mum also would not be able to self fund for long, and unfortuantely I would not be able to top up any payments. The cost of supporting mum over the last four years has seen all of my savings diminish along with my current salary as she had been wrongly advised on her private pension. Luckily half of dads pension is now paid to her, but I cover alot of unseen costs.

    By the time her affairs are resolved and she has to go into care I estimate 3 years self-funding before that money runs out. My thoughts are shared with you Alice as the slow realisation of costs hits home, its not a good place to be and it fills me with dread. I am playing the euromillions on Friday....but with a 0.00000....0715 chance of winning I'm stuck with the reality of difficult times ahead. I hope you have some support even if only in word and deed to get you through it...and perhaps faith;)
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,245
    Faith is my key!
    I emailed the social worker who is trying to get me a direct payment for a respite break yesterday with an update on the situation. I quoted the Arabic saying .......trust in God .....but tie your camel.
    I think we have to plan then something we have not thought of our self pops up. We have to get our head in the right place to see unexpected solutions.
    I came across a lovely phrase yesterday. Do small things but with great love. Caring is about that.
    I am trying to arrange a respite stay in the first instance, I think it will pave the way, I am also going to look at a place nearer too. We have followed a life that has taken risks because it seemed right not for financial reasons.
    Now I feel I am faced with another risk, so yes, we need faith in God, the Universal Good and the kindness of people to see us through.
    I had a bonus today, I woke thinking was my procedure day to realise I have one more day before. So I plan to fill it tying up odd ends and enjoy it.
    Good luck with the lottery! I have a few premium bonds it is time they wake up. Take care, kindest regards.
     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Good luck with the procedure/treatment -hope it goes well for you.

    I liked your qoute 'trust in God....but tie your camel'. Finding solutions requires constant re-thinking and looking at the situation in different ways. Some days I become weary of it all. The only thing we can do is keep going as best we can. I too have a few premium bonds, but alas good fortune hasn't shone its light yet.
     
  5. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Yesterday mum was in a lovely mood and had so much clarity, a pleasant day yesterday. When this happens, it sets you up for the rollercoaster ride downhill. Today completely different, she's quite angry with the world and I am sitting quitely letting her do what she needs to do so that she settles down -which maybe sometime yet :(
     
  6. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Well mum has settled down now and much calmer. I knew I had to just leave her and answer her if she asked something, rather than take over trying to control her world. I have cooked beef stew in porter ale with dumplings -one of her faves
     
  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Well mum ate all of her beef stew and dumplings -I was surprised. The duty social worker called me today and told me the POC won't start until 17th June, so I have to now cover another week and a half. Time my brother did some work, so I'll be on the phone tomorrow about it.

    Settling down for the night as mum has returned to a better mood. She asked if we could watch War Horse again, but I don't think I could having seen it so many times. Mum was a horse woman for many years and the slightest thing involving a horse sets her off if watching TV. I've promised her I will take her to the Cheshire Show to see the nags...she was quite happy with that.
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Well I didn't win euromillions....no surprise there!

    Today mum is a much better mood. I asked her about her uncle Jack (my great uncle) running away to Blackpool today. She laughed and said she never knew him, but by all accounts he was a lovely lad. She said he must be in his late 90's by now if he's still alive. I found that response interesting as mum somehow had orientation to time and events.

    Mum has told me now repeatedly there are two little girls she talks to and I have been scratching my head wondering who and where these girls are. Finally the penny dropped today, they are the dolls she hand knitted and which sit at the back of her chair

    dolls.jpg
     
  9. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    We've just finished our dinner. Mum over the last five years has had a 'thing' for peas. Tonight I cooked steak and chips and peas and just couldn't eat the peas. The last 4 years has taken its toll and I swear to God if anyone puts peas in front of me again I will loose the plot.

    We have visitors coming tonight (now a rare occurence) so I'm keen to see how we go on and if mum is comfortable with people who may have become strangers to her
     
  10. AliceA

    AliceA Registered User

    May 27, 2016
    2,245
    Hi there, I hope the evening goes well. I smiled about the two girls. My husband won a toy duck, it is attractive but I hoped after a while I could pass it on to a child, just when I thought the time was right he must have read my mind and told me how he loved that duck!

    I had my radio frequency ablation but no BP problems during the session. I am on a HALO trial, this name always makes me smile! So there was less sedation and although a sore throat and chest I have recovered better than some of the previous sessions. They did put a plate on at some point but I forgot to ask why.
    Good news is I am off the 2week wait and sessions put back to 6 monthly. Just waiting again for biopsies.

    I have decided to go ahead arrange a respite break, first break for over four years. My husband visited and fell in love with a place quite away from home, there is a personal connection, but it is suitable as I have been offered accommodation in a quiet corner, the self catering studio first offered has been taken by a permanent resident. He is calling it a holiday for the two of us.
    I have decided it will be interesting and an opportunity to understand what goes one. It has lovely grounds with seated areas so a sit and read would be lovely. No having to cater for two different diets either.
    The centre is not far away either so I could walk.

    So now I have to name and sort out clothes etc. for five days, washing is done daily but they like that amount in hand for the whole stay. I decided to buy new underwear/sleepwear so I can have a 'ever ready' case for any respite stay in future. He had plenty of shirts so we chose five, then for the trousers, I thought one for the journey and two spare. I thought we should check all the trousers quickly for signs of wear and also a quick measure as his shape has changed. I went to the bathroom and came back to find various drawers emptied on the bed. So a quick change of plan. The trousers ready to be sorted are now in a pile waiting for tomorrow. My poor love is tired out! We sorted a bit then put stuff back. So no loss of face, I suggested it was a good thing to do.
    I thought I would tell you this as it may be helpful. I have ordered iron labels and others to stick on objects and shoes etc.
    You may be familiar with this, it takes me back to the children going to school!
    I am thankful I am not as bad as I was after the last session!

    Anythow I trust your even goes well, sometimes people rise to an occasion and host it but then there could be backlash the next day when the bright host is worn out! Good luck.
     
  11. Starbright

    Starbright Registered User

    Apr 8, 2018
    402
    Female
    Hello @Palerider ..love your mums knitting clever lady and so neat stitches..I’m an obsessed crochet hooker according to my family

    @AliceA ...I’m so glad all went well for you with your treatment , (( as you know I don’t post often)) but I do log on most days and find comfort in the advice and posts of others especially your words as they often resonate with my thoughts on how to cope with my O H ...Thank you .
    A x
     
  12. AliceA

    AliceA Registered User

    May 27, 2016
    2,245
    Thank you too A, it will be life long I have been told but twice a year is more manageable. I think the relief gave me a surge of energy today! Hope it lasts. My initial enthusiasm agreed to go with my husband But that means packing for two but separately. They may not have space but I would not know until last minute. This is a private arrangement, SS said I need respite gave a list of places for my husband as the council commissioned beds. One was far away too far, the second had a waiting list and I could not be added. The third say they could not meet my husband's needs as it was rehab. So we visited this place that we have some connection with and were greeted with open arms. Of course if rooms are taken for permanent people we may lose the chance but it is an interesting exercise. It did give an opportunity to talk to the family about what the Dad needed, perhaps we Carers make it sound too easy!
    So next week, labelling, packing, finding transport.............

    I hope life is treating you with kindness. Xxx
     
  13. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Thats good news Alice to be back to 6 monthly sessions and not as bad as before, lets hope the biopsies come back ok. I have heard of the HALO trial -it is a unique name :)

    Good to see your getting all the clothes and packing sorted and thanks for the tips as well. Mum has a huge amount of clothes that I will have to sort through when the time comes for either respite or care home placement. Yes, I remember mum stitching labels into my school clothes -how funny to remember that, so old fashioned these days lol. -something I will have to think of though.

    Be good for you to go to the respite place together and check things out, plus hopefully it will help comfort you how things may turn out in the future. I'm glad I took mum to see the day care place, it was an eye opener in how she responded -which reminds me I need to organise some days for her now we have carers coming in.

    Mums dolls are highly sort after when people see them. They do ask mum if she'll knit more but I intervene and say no, she wouldn't be able to do it now. Those dolls in the pic she knitted about 5 years ago now. They obviously are a comfort to her so now I know who the 'two little girls' are, they're welcome to help out.

    Mum was ok for about 40 mins when the visitors arrived and then she took herself upstairs unsure of who they were. She coped better than I thought she would. The visitors left at 10pm and by that time mum had gone to bed and was sound asleep.

    Let me know how things are going Alice :)
     
  14. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    Yes she was superb a needlework and knitting -a perfectionist. She has loads of cross stitching work too that she has done over the years.
     
  15. AliceA

    AliceA Registered User

    May 27, 2016
    2,245
    I am glad that the evening was reasonable.
    I have tackled more clothes sorting so quite worn out now. Still quite a bit to do. I have to be gentle about getting rid of anything! My husband has always been the 'might come in useful' type, so often he has been right!

    My granddaughter has suggested iron on labels, certainly easier. The new things should be washed before applying.
    We are visiting a more local carehome this week, I am/have prepared my husband the the children are not in the position to care for either of us should the need arise. I have also explained what their Dad would need too.
    Whether we or even one of us will go will depend a whether there are spare rooms, obviously permanent places come before respite.
    So tomorrow, I will check and sort transport, I think I need two weeks to do what I have to do.

    Have you any idea why a metal plate is used, I had one put on a leg before a gallbladder operation just under thirty years ago, during this last procedure I heard the mention of a plate being used,
    I am curious because I do have a registered decision on my care. I was going to ask the consultant but the nurse discharged me this time.
    It would not help the HALO programme to lose a patient! The doctor checked I was happy to have a video taken as they really have to struggle for funding. My health is a bit complex! I do have an DNR hence the curiosity.
    Please do not answer if it compromises.

    I have a problem, I sat to have a drink and really do not want to get up and do lunch!
     
  16. brambles

    brambles Registered User

    Sep 22, 2014
    228
    Female
    NW England
    @AliceA not 100% sure, but I think a metal plate is attached duing medical procedures when an electric current is being used during the procedure. I think it is to direct the current in the the way it is supposed to go rather than through the operating table.
    I might be wrong , and I am sure someone will come along and correct me if I am.
     
  17. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    #137 Palerider, Jun 9, 2019
    Last edited: Jun 9, 2019
    Hi Brambles -your right about earthing the patient when having surgery for potential diathermy burns -thats why metal rings are taped and anything that can be removed that is metallic is removed. The metal plate in this procedure is used to protect the patient from unecessary x-ray exposure. A contrast dye is injected and repeated x-rays taken to help the doctor find the place for needle biopsy. The metal plate is positioned so that the patient does not recieve exposure to parts that don't need it. Its used in many procedures requiring contrast needle biopsy and other non-invasive radiological procedures. Sometimes in gallbladder ops the surgeon may want to explore the bile ducts, so they do the same thing -inject contrast and repeat xrays to explore the bile ducts.
     
  18. Palerider

    Palerider Registered User

    Aug 9, 2015
    444
    Male
    North West
    I was chuckling to myself, I'm the same with mum when I've sat down and had a beer and then think about having to cook the evening meal -it does get tedious. Today we are having roast chicken as its Sunday and the weather is quite chilly for June.

    Yes the visit was interesting distant relatives who wanted to come and say hello, a lovely evening even though mum withdrew early on. It was nice to catch up with people we rarely see and who are genuine.

    Fingers crossed for you on the rooms, I hope it happens for you :)

    Good on you for agreeing to the video, brave of you. I've answered Brambles post on the use of a metal plate -see above.

    I am worrying about labelling everything now, me and irons do not get on :eek:
     
  19. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
  20. Susan11

    Susan11 Registered User

    Nov 18, 2018
    1,468
    I can recommend these labels too. You can also put them on at the CH if you've forgotten something or bought something new.
     

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.