1. Littlespelk

    Littlespelk Registered User

    Dec 30, 2007
    4
    Yorkshire UK
    Hello everyone, I'm new to the forum,

    Not sure what I want to ask or if this is the right place to ask. My Dad has been treated initially for vascular dementia and recently the family doctor told us it is Alzheimer’s disease. My dad’s state has dramatically changed within 5 years. But recently his mind has deteriorated and now he is confused most of the time, where until a month or so ago he would have days where he seemed alert and as though there wasn’t much wrong, those days have now gone. Having seen my Granddad (Dads, Dad) suffer this awful illness we are all aware of how the disease can develop though we understand each person has different experiences.

    My main concern at this stage is not my dad, but my Mother’s health. Until recently she has been coping fairly well, there have been periods where she has found it hard to cope but has always pulled through those periods.

    We have all talked to some degree and I know mam and dad still talk through their feelings and experiences (when dad is able to). I Know Dad doesn’t want to go into a care home, and that Mam will do everything possible to avoid that happening. They have talked about possible day care or even periods of respite care in the future.

    What is bothering me is I feel now that it may be time to at least be thinking about day care a couple of days a week if possible. I just don't know how to approach the issue. So far my parents have pretty much refused to get Social Services involved. My sister and I have slowly been working on my Mam, trying to get her to focus on the long term as well as the here and now. And though she is still adamant about not putting Dad in a care home, she does see that day care and possibly respite care will possibly be useful.

    She is close to breaking point, so much so that she has recently been suffering a form of blistering due to stress. Our GP has been very supportive of my Mam, and has also suggested Respite care, which my Mam has turned down.

    I think Mam compares herself to Grandma and feels that because Grandma coped well (at least what we saw) that she has to too.

    Mam like me is very sensitive so I don’t want to upset her but, I feel useless watching her getting more stressed and depressed, and I can see something has to give.

    My sister and I have been doing our best to support Mam and also to be there for Dad, but I am myself disabled so physically I am limited to what I can do, and my sister works fulltime and has a son to look after as well, so her time is limited.

    I think what makes things worse is that Dad is in what I would call the middle ground, he is still aware of what is happening now, but gets awfully confused and very forgetful of present day events. But is still aware of where he is and who everyone is at present.

    I was just wondering if anyone could suggest ways of approaching the above situation and causing as little stress and upset as possible.
     
  2. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Hi and welcome to TP.
    Your situation is very much like mine.Dad was diagnosed eventually in September having battled for a while with the GP.Myself and my sister help Mum and Dad as much as we can,but we both work and at times it is difficult to fit it all in.Fortunatley for us we both work in a care home and deal with Dementia and A/Z.That's not to say we are blasé about the illness,but we have a further insight of how to deal with it.The knowledge we have doesn't make it any easier for mum to deal with.she admitted to me yesterday that she was having trouble coping.I said its time for outside agency help.A big "NO" was the reply i got.I have decided to leave the matter a couple of days and have booked some leave to be with them when the kids are back at school,to try to assess the situation myself.Just a thought,but will your Dad listen to you or your sister?Mine seems to take more notice of us than mum and at the end of the day if he can decide for himself if he needs day care then all the better.
    love and best wishes elainex
     
  3. Littlespelk

    Littlespelk Registered User

    Dec 30, 2007
    4
    Yorkshire UK
    thanks for your response elainex, I believe my sister may be able to talk with Dad, she seems better at talking things through with him, I'm too soft for my own good. Mam and Dad have talked about both day care and respite care. It initially looked as though Dad was ok and willing to go into care for a week or two, but whilst they visited my Grandma in hospital, Mam heard him tell one of my Uncles that he won't go into respite care. So we are back at square one lol.

    I will speak with my sister about possibly approaching Dad in a week or so and see where we get down that avenue.

    It is such as sad illness to deal with, not only do you have to watch loved ones suffer but watch other loved ones deal with the coping and the slow loss of those nearest.
     
  4. Jazz44

    Jazz44 Registered User

    Dec 28, 2007
    6
    West Yorkshire
    Hello, we have similar situations

    We seem to have similar situations going on only a few months further down the line. My Dad has been diagnosed with exactly the same thing. He went into respite care in June and then August, which he didn't want to do, but Mum was very ill and couldn't cope. With Dad's worsening incontinence and memory loss, then aggressive behaviour towards Mum when she was trying to help with washing etc. she felt she needed a little time to herself to get her energy back. She is not physically that able unfortunately due to Arthritis, I also have a little of this, with bad knees, and have a 3 and a half year old daughter. So not an easy situation really. When Dad was in care in August, Mum called in the Social Worker and said she couldn't cope anymore. I think she suffered a nervous breakdown earlier this year, once she started to allow herself to accept Dad's illness was actually happening to both of them. Only Summer 2006 they had denied all help from anybody, cannot believe that within one year, how everything had changed so much. So in August we moved Dad into full-time care, a heartbreaking time for us. I had to tell him whilst he was in the respite home, and take him to the new home, at which time he was sobbing. One of the most difficult things I have ever had to do. Since then he has deteriorated a great deal I am afraid, with several more TIA's and also having managed to escape from the first home (and seemingly beaten up, or he had a terrible fall) he seems to have faded considerably.

    I dread going to see him and my heart simply breaks at the whole situation. He gets so few visitors and deserves so much more.

    I guess your situation may be different depending on the course of action your mother takes, but I would strongly advise several meetings with support groups, social services, my Mum even has an Occupation Therapist to help her cope with the situation, and have everything in place for when your parents do accept help. There is likely to come a time when they will not be able to refuse it, and if you have suitable day care and eventually full-time care in mind, the transition may prove to be smoother.

    I wish you so much luck for this year. Let's hope it is not too painful a journey and we all find peace somehow.

    Godbless.

    Janxxx
     
  5. Littlespelk

    Littlespelk Registered User

    Dec 30, 2007
    4
    Yorkshire UK
    Thanks Jan,

    Sorry to hear about your situation and my thoughts are with you and your family. I suppose you described exactly what I hope and prey I can help avoid.

    If I can get Mam (and Dad) to realise that day care and short respite care could help avoid full time care, or at least delay the need. I tried again only last night to talk with Mam, trying to tell her that if something isnt done now, she will have a breakdown and possibly worse in the near future, then she won't be able to help Dad.

    I can understand her feelings of not wanting to take action, lets face it, it is an awful sutuation to be in and as you said it is a heartbreaking decisions to take.

    I am trying to get Mam to realise she doesnt have to do this alone. And she has herself to think of.


    Regards
    Littlespelk
     
  6. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Littlespelk,

    This is a common situation with dementia but it does not make it any less tragic.

    You have had some good advice. I can only add, could you consider visiting your Mum's doctor (with your sister) and telling him/her how concerned you are about your Mum and asking him to talk to your Dad????

    I know the doctor cannot talk to you about your Mum (privacy laws) but you can talk to the doctor. If the Dr. could then tell your Dad that your Mum needs help in the house,a break, etc. to help her regain her health, your Dad might listen . . . . ???

    Only you can know if this could be helpful. Some sufferers (esp. men) seem to take more notice of doctors than of family members - the authority figure, I guess.

    Whatever you decide, I wish you success. Sadly, I think the long term probably holds a Care Home for your Dad, but I understand your desire to delay this as long as possible. But your Mum needs to care for herself, or it will be forced on her. Oh dear! I DO feel for you. Best of luck.
     
  7. Littlespelk

    Littlespelk Registered User

    Dec 30, 2007
    4
    Yorkshire UK
    #7 Littlespelk, Jan 4, 2008
    Last edited: Jan 4, 2008
    Thanks Ne1l and everyone.

    I am sure that I won't be the first to say this in the forum, but it is a great help just knowing that we are not alone (not that I thought we were).

    I think the Idea especially as we have a really good GP.
     

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