new: husb 64 caring for 67 wife

Discussion in 'ARCHIVE FORUM: Support discussions' started by Roland, Apr 3, 2008.

  1. Roland

    Roland Registered User

    Apr 3, 2008
    7
    bedfordshire
    husb 64 caring for wife 67 seeks advice. would value others experience. maybe find similar others with similar sits?

    Chris has other problems as well as AD. She has taken Thyroxine for 18yrs after thyroid cancer operation. High doses of this ?caused osteoporosis. AD started in 1999 with "eyes slipping" - ie unable to read across the page. The Neurologist who saw her in 2001 annoyed her when he asked for name of Osama bin laden 2 weeks after 9/11 and she couldnt answer. She never liked him after that, a "nasty man". He said her symptoms were atypical. Mainly clumsiness at first, couldnt use phone pad, TV remote, problems dressing; At that time could chat OKish. Eventually she had a brain biopsy in 2005 just in case she had some inflammatory brain disease which treatment could help, but result was AD anyway.

    After the biopsy she had fits. In the first one her back arched and made a "crack". I got her on the kitchen floor and later she went back in hospital. No one realised how much pain she had. She screamed especially when she was pulled up to get out of a wet bed (other patients told me) Xrays showed 3 spine fractures. May have been there a while before but cracked more in the fit. The fits settled after some months although at times she looks faint as if another might come. But the back pain continues and its difficult to get the medication balanced. Nurses suggested patch type painkiller but they make her more irritable. Sticking to Paracetamol for now.

    Seems to have lost all sense of direction now, walks into blind corners, mostly led round by the hand. Fell over in garden quite often last year. Difficult getting out of front door. Hesitant due to balance and eyesight problems. Mever looks at things when I point them out; cant seem to focus. Bending over more. Can get out for a walk altho I dont know how much pain she puts up with. Always denies any. Cant feed much apart ftom 1/4 sandwiches and biscuits. Wears inco pads night and day. Washed, dressed etc.

    Managing the stairs - just, so far. Asked District Nurses to come and advise about her bottom being sore not long ago. Felt a bit undermined as they told the GP they were appalled at what they saw. Foolishly I asked Chris to hurry to a couch to lie down in another room, thinking they were busy people. She can complain, Stupid Man, No I wont etc and also can growl, plus loooks a bit unsteady. They asked if I wanted her in respite. No, Im fine. Same from the GP. They commented it can be difficult to have to live 24/7 together and you can rub each other up. I think they felt Respite would be the first step to N/ Home in view of how Chris seemed to them. Anyway I feel sure I dont want that. Hopefully wont need it... Feel unsure I want to ask for their help again... CPN and SW came once and are available if we request. OT supplied stair rail.

    Next thing may be having bed downstairs. The other thing we need to have is some way of getting into the bath. Gave up doing that 8 weeks ago when it was v diff to get her out. Then there would be a further shopping list for equipment like hoist, wheelchair etc. My two concerns; will professionals make us send her somewhere else; And hope I remain fit and OK to keep going - not a problem so far. Chris asked d-in-law Help me die at Xmas last year. Keeps saying Why did it come. Always says Thank you darling last thing at night. Likes singing along, usually smiles. Still got quite a bit to enjoy together. Feel bereft of someone to talk things over to. Kids (3) are great but each is 1 hr plus away from here.

    Cheers, as they say

    Roland
     
  2. burfordthecat

    burfordthecat Registered User

    Jan 9, 2008
    1,707
    Female
    Leicestershire
    Hi Roland

    A very warm welcome to TP. Like all of us, you are sorry that you needed to find this site, but now that you have, you can be guaranteed advice, friendship and an ear to listen to you whatever the time of day or night you need it.

    I am not able to give you any specific advice but I'm sure it will not be long before other members who have been in a similar situation will be able to.

    Please feel as though you are amongst friends. The advice on this site is fantastic, real people, real situations, dealing with real problems.

    Keep posting and let us know how you are getting on.

    Love from Burf x x
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Roland, welcome to TP.

    I can identify with most of your story. I care for my husband at home until six months ago, when he lost his mobility and balance as a result of an infection.

    It's hard work, and emotionally exhausting, but I'm not finding it much easier having him in care. I miss him so much.

    Please post again with any questions, or just join in any other thread, your experience will help others.

    Best wishes.
     
  4. margaret savage

    margaret savage Registered User

    Mar 20, 2008
    12
    Hello Roland,
    Just to say that you must be a wonderful, caring person to continue with so little help and that you deserve praise for that. I am quite new to this site but I have found great support from everyone and so will you.
    You don't seem to get too much help at present but I am sure there are people on this site that can give you more info than I can for when you feel you need to ask for it.
    You must also be careful you don't get too low yourself before getting help so you can carry on as long as you want to.
    Very best of luck and hope you let us know how things are going.
    Margaret.
     
  5. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Hi Roland
    Welcome to TP. I haven't had the sort of experiences you describe, but I'm sure you will make contact with others who have, through this site. You are obviously doing a fantastic job in caring for your wife in very difficult circumstances. Your love for her shines through. Regarding your concern about contact with professionals, I found a CPN the most helpful contact to have. He was very supportive, non judgemental and was able to offer advice and support that really made a difference. At some point you will probably need more help (indeed you mention some very practical aides that would make a real difference to the quality of life for you both) so I would make some initial contact now. My experience has been that nowadays all the emphasis is on helping the person to stay at home and I would have thought that their concern at present is that you are reluctant to accept help to make that easier. I would get all the help you can to make life more comfortable for you and Chris. You don't have to accept respite care if you don't want, though there may come a point when it would help you to have a break, there are plenty of other ways in which you could receive more support. Good luck with it all.
    Blue sea
     
  6. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hello Roland and welcome to a very friendly site!

    My reply may sound brutal but it is truly meant with the best intentions and spoken from the heart as my husband has been in hospital for 6 weeks after a fall, now going into rehab and I am being warned I may not cope at home! (terrible emotional feelings all the time about this).

    Our doctor friend, our GP and neighbour called to see me last night. He spent time preparing me for the inevitable. One thing he did say was that we all plod along coping with each problem and then a crisis occurs - that then is the straw that breaks ... camel's back. Several members of TP have experienced that. I believe you may do so in the future.
    Your decision has to be do I take advantage of NHome facilties now, giving time to look around and choose, or do you wait for the crisis. My own inclination is to go for the first option, whilst you are still fit enough to cope. Then hopefully when all settles down you will have 'quality' time with your wife instead of what must be a constant hassle.

    These are obviously just my thoughts - any decision you make is yours and will be the right one.

    Take care Jan
     
  7. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Roland,

    I care for my husband at home ..he has Alzheimers and Vascular dementia..in no way is he as affected as your dear wife.
    You are an amazing man to be doing what you are doing..I cannot offer you advice..you must do what you feel to be the best thing.
    No-one here will judge you..TP is a good place to throw out your thoughts and questions..and feelings..and you will have a variety of response..and a wealth of support...:)

    Welcome on board!

    love gigi xx
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,102
    Kent
    #8 Grannie G, Apr 4, 2008
    Last edited: Apr 4, 2008
    Still got quite a bit to enjoy together. Feel bereft of someone to talk things over to. Roland[/QUOTE]

    Hello Roland.

    I do feel these two points you made are so important.

    As long as you feel you and your wife still have some quality time left, you will not make the decision to go for residential care.

    As BeckyJan said, so many 24/7 carers wait for a crisis. She advises against it, but it`s what happened to her. And the reason it happened to BeckyJan is the same reason it will happen to most of us, we aren`t ready yet.

    If the crisis happens, at least we will know there was no alternative, so the decision is taken out of our hands. That`s just how I feel anyway.

    As for your second point, not having anyone to talk things over with, feeling so isolated, I hope Talking Point [TP] will help you. There are so many of us in similar positions, there is alwyas some one to offload to.

    Take care xx
     
  9. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Hello Roland

    I am in similar position as yourself except that Margaret is not as bad as your Chris, inasmuch as she has no other ailments apart from AZ.

    It is quite advanced, doubly incontinent, cannot walk unaided, lost coherent speech, requires bathing, feeding, dressing undressing etc. She shows no interest in anything, neither television, wireless or music.

    I have however managed to keep her at home, albeit had to sell the house and buy a bungalow, she was totally incapable of stairs and the house we lived in wasn't suitable for a stairlift,
    I had the bathroom made into a wet room and use a shower chair to bathe Margaret each morning.

    As to the problem of sore bottom, I have found that four changes of pad/day with the application of Sudocrem morning and bedtime seems to keep her clear. When she goes into respite she usually come out with sores, They don't change her as often as at home and I don't think they shower her every day.

    Which brings me to respite care, I have been caring for Margaret for ten years now and until last year I refused to let her go into respite. There comes a time however (and you will know when it arrives) when respite care becomes needed and that is the time to take advantage of it.

    Margaret had difficulty in eating solid food and for quite a long time I put everything through the food processor so she got the nutrition without the effort of chewing. Luckily I have weaned her off pureed food and back onto solids, although I have to cut everything up into small pieces.

    The thing is to get as much information about what help is available in your area, I found the CPN very helpful, the local branch of the AZ society extremely helpful and their support group meetings were also of benefit.

    The Social Service is useful but don't be led by them, find out what is available and choose what is most beneficial to you. You will probably have to fight for what you want, but stick to your guns it is worth it in the end.

    Lastly keep posting, the help and friendship on this forum is second to none, and nearly always someone has experienced whatever problem you are encountering and more often than not can suggest a solution.

    Cheers Barraf
     
  10. jane@hotmail

    jane@hotmail Registered User

    Mar 13, 2008
    49
    Bedfordshire
    Hi Roland,
    My heart goes out to you. I wish I could reach through the screen and give you the hug you deserve......You remind me so much of my dad. Like you, he loved my mum so much, and was so scared to let anyone else get involved. He thought the decisions would be taken out of his hands and she would be made to go into care. He hid so much from us and struggled on under so much stress. It was so unnecessary, and eventually it hit crisis piont and mum had to go into care. It was an emergency situation and it was so distressing for us all. The only good thing that came out of it was he realised he needed help... After some much needed rest, we helped him sort out the house, he organized care and had her home just as quick as he could. While she was in care he could hardly go and visit her it broke his heart. They had a further 9 months of being together. It meant so much to him as he had prostrate cancer that had spread to his bones. Sadly, he had a heart attack in February and died. My mum and dads love story reminds me of yours, except you're doing the right thing by looking for advice. I really hope that you find the support we all want to offer you a help, especially what Barraf has to say. It can be done, but not all by yourself. My thoughts are with you.
    Jane
     
  11. Roland

    Roland Registered User

    Apr 3, 2008
    7
    bedfordshire
    I'm very grateful for all replies, so generously given from your own experience. Pleny of food for thought. I can see where you're all coming from.

    I have thought of "what ifs" such as someone with AD and poor mobility fracturing a hip. But although unsteady continued walking preserves some strength. Difficult balance - when walking is not worth it anymore.

    "... hope that you find the support we all want to offer you, especially what Barraf has to say"

    Much appreciated. Thanks

    Roland
     

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