1. waterfall

    waterfall Registered User

    Jan 2, 2008
    12
    Sheffield
    Thought I would introduce myself. Happy new year to everyone.
    My husband was diagnosed with posterior AD in September 2005 at the age of 52 but I new now looking back he had symtoms before that. It made me really ill as my father was ill at the same time and I was trying to hold down a new job with a huge learning curve at 50 years old. My employers were very supportive, but in the end due to the location of my workplace being the other side of the town and the devastation that the diagnosis have given us I terminated my job. The actual build up to the inevitable, the confusion of what was happening, the reaction of my husbands employers, the tests was too much and I ended up on anti depressants reluctantly, but I knew I needed help, as we both did. So much has happened in the last 2 years, the journey has been unreal. Living and fighting for benefits has been a nightmare, never asked for help all our lives allways worked. We had so many plans, children grown up, both working in decent jobs now all taken away. Our marriage has been effected n a big way, we were so close, joined at the hip I suppose but we were so happy and loved each other so much. The feelings and relationship is so different. We have 2 children, well they are adults, but I see and feel the pain in their eyes as well as my own. We drift from day to day, argue loads and I still cry at what we have lost. I fear for the future and panic, its like being on a roller coaster but not able to get off. I could never imagine the effects of the illness and I thought it just effected memory but was I in for a shock. My husbands sight is effected he has severe visual impairment, spacial awareness, no concentration, cannot write or read, gets confused, panics and gets anxious. He cannot use stairs or escallators as he feels he is placing his feet into infinity. He cannot see any depth when confronted with water, and is anxious when he looks into glass. The problems are endless. There is nothing he can do to pass his time as all his skills, diy etc have diminished. All he does is watch t.v and I am not allways convinced that he is taking it in as he cannot recall what he has watched. All his emotions have gone. It is so hard to except that it is the illness and not my husband when he is being awkward or saying things to me that he would never have said befor this monster took over him. I could go on forever, the journey is getting harder but I will carry on as I have to remember the good times and take each day as it comes, but it is really hard. Sorry for going on , I have the comfort of knowing that I am not on my own .
     
  2. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Welcome Waterfall:

    I have quoted your comment as that is what so many of us say - 'one day at a time'.

    So sorry you have to post this but you will find on TP many who share the same experiences. Not sure if you will ever come to terms with it 'cos I don't.
    It is so very sad and I do hope that eventually you and your children will find support - it is out there if you seek it. Have you located your Alz Group? - in our area they have been excellent at putting us in touch with others in the same boat.

    Please keep posting on all your worries and fears - there is always a listening ear and alot of helpful advice.

    Best wishes Jan
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,649
    Kent
    Hello Waterfall, [what an appropriate user name]

    Your husband and mine were diagnosed at the same time, and I also now realize the signs were there years ago. I too didn`t recognize them for what they were.

    But your husband`s condition seems to be taking hold much more quickly and I can only sympathize.

    I hope you will soon have responses from those who are living with the same rapid decline.

    Please never feel you have to apologize for `going on`. That`s what TP is here for. Even though we experience Alzheimers in different ways, we can all identify with you and hope you eventually benefit from the support and friendship that has helped us all.

    Take care xx
     
  4. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Waterfall,

    Just wanted to welcome you to TP and to say how sorry I am that you are going through this nightmare. I always feel it is hardest on the spouses of those with dementia. The rest of us (adult children, grandchildren, other relatives or friends) have other parts of our life to "fall back" on. For the spouses such as yourself, it becomes your whole life.

    You will find lots of support and practical help on TP. It is a good place to "vent" when you need to. We are sorry you are in the position you are (caring for a loved one with dementia) but we are glad you have joined us.

    Every best wish.
     
  5. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Waterfall,
    Welcome to TP! have just read-and read again your post.Life has dealt you both such a blow.
    My husband was diagnosed early in 2006-but is older than yours(although I am the same age) His decline is slower ,but like you ,initially, I thought he would just become more forgetful.no-one can prepare you for the other things that may or may not happen. He used to play golf 4 times a week and is (was) a brilliant pianist. Now he watches TV all day and scarcely talks-except to ask what is on TV!! It is so hard to live with-not knowing what the next day will bring. I've just given up work to spend my time at home with my husband-my concern for you is that you do not mention whether or not you have any support from outside agencies.
    Do you have contact with the local Alzheimers Society?
    In my area there are facilities for "sitters" to give you a break and we have access to a day centre.
    Please keep in touch. There's such a lot of support here on TP

    Wishing you both well... Lots of Love Gigi xx
     
  6. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear Gigi

    I too read your post several times, and have still not properly absorbed all the problems you have and the emotion you have pu in there.

    Although I am a regular responder on this site there are many posts that I pass over, not cos I am not concerned or interested, but because I can't offer any help. I am not sure I can offer any help to you, but I just couldn't pass over your post.

    You are so young to be going through this, and your husband is so young, it is clearly not how you imagined life would be after bringing up your children. You imagine a few years of earning two salaries, being able to enjoy the nice things of life, saving a bit for retirement, and living a good 20, 30 or 40 years more in good health and comfort. And it has all come crashing down. That is what got to me, you didn't say it, but that is what has happened to you.

    Well, it hasn't happened to me, so I can't be one of those people to tell you how it was for me, I am sure there are some on here who can empathise.

    I am not sure why I am responding, I just feel I need to tell you how much I feel for you and what you are going through, but usually I am not like this, I am more practical. Your post has just got to me.

    I'll start again in my usual forthright style.

    First of all, I note that you and your husband appeared to have had a good marriage "joined at the hip" you say, and "loved each other so much", well hang on to that and thank God or whoever you wish to thank that you have experienced that special pleasure, cos not every married couple does. You see the pain in the eyes of your adult children, well thank the same person for the fact that you have two children who have clearly been brought up in a loving family and care about their dad. Not everyone has that benefit, even though they may have tried hard. I must say from my own point, my two daughters have been wonderful with my mum who has "the illness", and I am so grateful for that.

    You can tell your husband is "placing his feet into infinity", that is an interesting one, you must know him so well to know that, wow, that is really powerful that you can tell that. It just so happens that I feel like that myself on escalators, I really don't know where I am going, I put my feet down as firmly as possible, cos I am scared that it might not work.

    I think you should start by congratulating yourself and your husband on having had such a good marriage that you know him so well, and then I think you should cut out the arguments cos they are not part of your marriage at all, they are part of the illness, it is quite clear. Sorry, I am not noted for my advice re relationships, so "cut out the arguments" is probably a bit crass, and I wouldn't be able to advise how to cut out arguments cos all of my life has been arguments, but yours has clearly not, so try to "avoid" them and learn to ignore the things that cause you anger. Some of us in unhappy marriages are used to that. It might seem wrong now, but perhaps you have to adopt the approach that such people have, which is to ignore things that cause you anguish. Just ignore them. Easier said than done, but really it is the illness causing this, not your husband.

    You seem to know him very well, what a good wife you must be, and he must have been a good husband otherwise you wouldn't know these things. There is no way my husband would understand so much about me, even though we have been married for 35 years. Oh, Gigi, hang on to the good times you have obviously had. Marriage is for better for worse, and you are now experiencing the worse, but it does sound as if you have had the better too.

    Anyway, love, you can't change anything. The illness is here, it is probably distressing him as much as it is distressing you.

    Now it may sound as if I am telling you that you should feel lucky, and I am not. In fact, you are one of the most unlucky when you have such a loving relationship and lovely future ahead and it is taken away, what I am trying to say is "thank goodness for the good things we had", remember them and don't feel too embittered cos life chucks stuff at you that is hard to bear.

    I probably haven't helped at all, Gigi, sorry. I can't explain what I really mean, so I will give up in case I make things worse. But please do hang on to the lovely memories and thoughts that you have and see if you can't make this period of looking after your husband an extension of that, a time when he needed you and you did your best. You love him, so you do your best, and don't feel bad if you don't do it 100% right.

    Much love, I don't think I have helped at all, but I meant to,

    Margaret
     
  7. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hello and welcome to TP.

    It's always sad to read of one so young being effected by dementia. I can only sympathize with you... as all I can do is imagine your devastation in your hubby's diagnosis and having your worlds turned inside out. I agree with Nell's reply, it would be much harder on spouses having to deal with dementia.

    It may be worthwhile considering some sort of care package to make things a little easier.

    I am sure that you will find plenty of support here along with many caring thoughts. Take Care Taffy.
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear waterfall, welcome to TP

    No, you are certainly not on your own! I don't think there is one of us who has not experienced the emotions you are feeling. Although our loved ones all have different symptoms, no two cases are the same, we all feel the pain and grief as a loving relationship changes into carer and cared for.

    I'm much older than you, but we had only been married for four years when my husband was diagnosed. We were blissfully happy, both having been widowed before, and looking forward to a happy retirement together. So I do understand your grief at the loss of a loving partner, it's a form of bereavement.

    As others have said, all you can do is make the most of the good days, survive the bad, and come on here whenever you need support, or just a chat.

    All the best,
     
  9. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    For Gigi read Waterfall!

    Hello again Waterfall,Just want to point out that Margaret was addressing you! No offence to you, Margaret but want to clear this up before it becomes complicated.Waterfall,you hopefully realised that anyway!
    Like Skye ours is a second marriage-although we had known each other for 7 years before we were married we had actually been married for 3 years before this diagnosis-which was tough to take on board as all my dreams were shattered. You will find the strength to go on with this. The human spirit is incredible. Please know that we're all in this together-and there for each other...it does help.

    Lots of love Gigi x
     
  10. waterfall

    waterfall Registered User

    Jan 2, 2008
    12
    Sheffield
    Hi everyone, a huge thank you for all your comments and support, I feel that I have made new friends. My journey made me crash today:eek: The arguments started again after my husband announced that he was not taking his medication for the second night running,said he was going to die anyway (aricept 5mg). I couldnot reason with him, the language was terrible, said he hoped that I got the illness, made comment that I couldnot look after him, I did nothing for him, it just went on and on. I shut off to it at first but then he started to laugh at me as though he new it was getting to me really badly, which it was. I shouted back at him and got really distressed. He never came to bed but slept on the setee. I couldnot sleep as I could here him moving around downstairs. This morning as I came downstairs he went to bed. I took the dog out and contacted the alzheimers local branch, i was beside myself, i needed help but was afraid to access it as my husband willnot accept any help outreach etc. The support was superb but they are actually restricted aas he willnot accept help. They contacted my G.P. who then arranged for me to visit him, I was beside myself, I think this was a build up from a stressfull christmas and my two children being at the other side of the world on holiday, both parents ill and me having to do all the christmas dinner at my parents with no input from anyone else. My mother never got dressed or helped at all. I told my husband that I had asked for help whether he liked it or not, this went down like a lead balloon. He sobbed, then was totally verbal again, okay one minute then twisting everything i said around. My G.P. was totally supportive and is getting advice from our local mental health hospital, possible social worker/cpn. He did mention which I was totally devestated by was having my husband sectioned as he willnot accept help from anyware. There is no way I want that no matter how bad I feel. There has got to be some help for me/us. The alzhiemers support workers have suggested paying us a visit and one going out with me for a walk while the other one has a chat with my husband, this seems worth a try and hopefully my husband will accept this. I meet with my G.P. again tomorrow. We will see what the support is that he can come up with, there has got to be something out there for younger people. We only see the consultant once every 6 months and is a waste of time, disstressing for both of us, I am unable to speak to him about my husband while he is present and if I do my husband is still in denial. He gets the same questions each time we go time, date, day, count backwards from onehundred minus 7 etc. I cannot even think straight so what is it like for my husband. Well had my moan again, things are calmer now and I think my husband will take his medication tonight and come and sleep in our bed. Take care everyone my thoughts are with you all xx
     
  11. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    106
    merseyside
    Waterfall Hang on in there

    Dear Waterfall
    Gosh I thought my lot was bad enough but listening to your post it told me that there is always someone worse of than ourselves. I understand your terrible predicament you MUST get help even as a carer you are entitled to help. In ordr to cope as long as you can at home with your dear husband I feel you will only do it with help. I started by accessing a Support worker who started off by just taking my dad out for a walk once a week This enabled my mum to have alittle break but it also got meant my dad got used to outside help. Because believe me you will not be able to carry on this journey without a lot of help. My journey began in February with as I said earlier the support worker once a week taking dad out. Now we are at the stage of day centre 4 days a week dad just transfering from an ordinary day centre to EMI and us needing carers twice a day dad living on a hospital bed in the lounge and stair lifts being fitted next week. My dad at first was so reluctant to take help but we had to do it gradually so as to keep him at home as long as possible. I believe that we havemanaged to do this although it is not at all easy. Please hang on in there and say to yourself that there will come a time when things will get easier that is when you are able to take up the support that is out there. THERE IS HELP OUT THERE BUT YOU HAVE TO KNOW WHERE TO GO. I am sure that together all of us will be able to point you in the right direction. Keep talking we all care and are there for each other.
    Lots of love to you
    Angela:)
     
  12. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Sorry Gigi/Waterfall for mixing you up.

    Waterfall, I hope you get the help you need - and deserve.

    Much love

    Margaret
     
  13. Christinec

    Christinec Registered User

    Aug 8, 2007
    214
    Hi,
    What a bad situation for you. My experience is with my Mum who became ill when she was about 80 and I do not know how spouses of younger sufferers manage.

    Do not post often although this site has contributed to keeping me sane this last year.

    Anyway what I felt I wanted to say to you is that Mum was sectioned because her illness meant that she refused all support at home. It did feel horrible. I think it is something we are brought up to feel ashamed about- a sign of failure. However Mum cannot decide what clothes to wear and on a bad day will not even know what her clothes are - so how can she possibly make any rational decisions about the care she needs based on all the facts? The way I see it if she cannot make decisions for her own good there has to be a process for someone else to make them on her behalf.The hardest thing is that she wanted to stay at home to die and she is now in a residential home. It would be untrue to say she is gloriously happy and settled but she is safe and looked after. She was not happy at home either(or safe) but that is the nature of the illness. This after several very difficult years.

    Wishing you all the best and hope you are given lots of support and are able to find ways for your husband to accept anything that will help you both. Try to look after yourself as well.
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,649
    Kent
    Dear Waterfall,

    I have had some comparable situations to you, the verbal aggreaaion, refusal to take medication, sleeping in the living room, but nothing quite as extreme as you are having to face.

    I`m glad you`re in the midst of getting some support. This fear of sectioning is understandable, but your husband`s behaviour cannot be allowed to continue and he needs help as much as you do.

    Take the help you are offered, otherwise your own health will be at risk, if it isn`t already.

    Love xx
     
  15. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Dear Waterfall:
    I cannot add much as previous posts have covered most things. Hope the possible support comes your way quickly cos you sure need it. Take all the help you can get even, as a try out - just a few hours of your own space will be beneficical.

    Take care and keep posting. Jan
     
  16. waterfall

    waterfall Registered User

    Jan 2, 2008
    12
    Sheffield
    a light at the end of the tunnel

    Thankyou all once again for your advice and comments they mean so much. Visited the G.P. again today about the desperate help that we so badly need. With the advice from the dementia support from our local alzheimers society who checked up on me this morning with a follow up telephone call to make sure things had settled down. I had a better night and my husband took his medication and slept in our bed. Our G.P. sought advice from a CPN at our local hospital as to the procedure of accessing help given the young age of my husband. He has now wrote to the consultant to ask for a referal for a cpn at our local mental health hospital. I feel the system breaks down when you are only seeing the consultant every 6 months and only G.P. for follow up every now and again. Where is the support in between? you are just left to it. The alzheimers society in our case have been tied as my husband not allowing any help but hopefully for my sanity and health we may have made a breakthrough. Two support workers are coming to visit us next week, the idea is that one will go out with me for a walk and a chat and the other will sit and talk to my husband. My husband is not 100% happy and very suspicious and has it in his mind that I am going to have him put away. I have explained best way I can that I have to have the help so that I am able to keep on looking after him. If I crash down which is happening more and more often there will be no one to take care of him. He is a little calmer today but keeps having a few tears but willnot tell me why. He has just retreated into the dining room for time on his own. He seems to want to be on his own which makes me feel I have done something wrong, but all I have done is ask for help for us both. I wish I new what he was thinking, at one time I new befor he spoke. Going to try a jigsaw tomorrow, should be fun with all the problems but it will beat arguing. Take care everyone my thoughts are with you all.x
     
  17. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear waterfall, I'm glad you have some light at the end of your tunnel. Well done for getting it organised.

    I hope the support workers' visit is successful, it depends so much on how your husband relates to the one that stays with him.

    With one of John's there was a shared interest in art, and he loved her visits. He had nothing in common with the other ons, and though she was kind enough, Joh's lack of language made the whole session boring -- for them both, I guess.

    If it doesn't work too well, it's worth asking if they could try someone else.

    You certainly haven't done anything wrong, as you say, you need your own health, or everything will fall apart.

    Good luck, let us know how it goes.

    Love,
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,649
    Kent
    My husband often wants to be on his own, Waterfall, and there are a few reasons I have come up with over the years. They might help you.

    • He wants to try to make sense of what is happening to him
      He wants to try to collect his thoughts
      He wants to switch off and stop thinking
      He wants some space
      He doesn`t want you to see his fear
      He doesn`t want to answer questions
      He doesn`t want to make a decision
    I don`t think he thinks you have done anything wrong, but unhappily, there are times when we are no longer on the same wavelength.
     
  19. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    I hesitate to post this reply in case I offend someone unwittingly, but my husband also often wants to be on his own, for the same reasons as Grannie G suggests, but he definitely does not have dementia, so it must be incredibly hard to determine what behaviour is "normal" and what is due to dementia.

    In particular, the last one, "he does not want to make a decision", I imagine there are lots of people in the frame of mind.

    Not sure this helps anyone, sorry!

    Regards

    Margaret
     
  20. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,975
    Toronto, Canada
    #20 Canadian Joanne, Jan 17, 2008
    Last edited: Jan 17, 2008
    Dear Waterfall,
    I understand your fear of sectioning but we had to have our mother sectioned 7 years ago. We actually brought my mother to the hospital on the pretext of getting free medication (free anything was very useful to us). She was in hospital for 2 weeks getting stabilized on medication and then was transferred to a retirement home - not a nursing home.

    The process was very horrifying to us - I had been told it would be the hardest thing I would do in my life and it certainly has been so far. Did we regret doing it? Only in the sense of the entire disease. Would we do it again in the same circumstances? Yes, we would probably have to as my mother wasn't on any medication at the time and was aggressive and violent. It took 5 security guards to restrain her. The following day, my sister and I were terrified going to visit her as we were positive that she would berate and upbraid us. She didn't - as she couldn't remember how she had got there.

    At the time, I was unable to care for her at home as I was working full time. My sister lives in another province and we had brought my mum to Ontario from British Columbia. Lots of dislocation all around, which created more problems.

    Things did settle down eventually but my mother's disease progress was so violent and aggressive it involved her being sectioned from the nursing home twice.

    I don't meant to depress or upset you, just to point out how perhaps sectioning could help stabilize things. It does sound awful but sometimes it is the most appropriate action, if not the desired one. And if your supportive GP has brought it up, I think you should consider it as a last ditch course of action.

    Your husband refusing to take his meds doesn't help his case, does it? Is it possible to imply that he could end up in hospital (just that - not mentioning sectioning) if he doesn't take the meds? Perhaps that will encourage him. Can you refer to them as vitamins & take a pill when he does? Subterfuges are often required.

    Take care of yourself.
     

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