1. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
    That's odd about the sheets, Casbow. I used the same ones with William for about eighteen months, before he went to the nursing home! Never had a problem with them.

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  2. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Oh Casbow, it's so difficult. I hope the new Kylie sheets are better for you.

    The thing I found most helpful was to sit my OH on the commode when he got up and before he went to bed, but if your husband is mobile that may not be possible. It was much more difficult when he was able to get around.

    Do you have a wet room? I don't know how I would manage without this and the shower chair. You may be able to get a grant to have one installed :
    https://www.gov.uk/disabled-facilities-grants/overview

    There is a financial assessment and we didn't qualify despite being under the 23,000. They said we could afford to take out a loan:eek: If we had and something happened to my husband then I wouldn't have been able to afford the repayments on my income.

    There is something called 'Bowel Training'. Don't know much about it myself but it might be useful to google it, also the Incontinence Service may be able to advise. It is an awful problem, I really feel for you.
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  3. Casbow

    Casbow Registered User

    Sep 3, 2013
    994
    Colchester
    Th problem is he is very mobile but also very cross when he wants to use the loo. Sometimes it is too late. Sometimes he will not sit down. He will not use the shower even though it is accessible and has a seat if he wants ,but he will not shower. I wish I hadn't got rid of the bath. We never used it. So I had a very nice easy to use shower cubicle installed. Now I think he would get into a bath. Too late. What a nightmare. I cannot get him properly clean. He gets cross if I take to long cleaning. We have an assessment on Wednesday with a view to what will happen if I need urgent respite or if he needs care home. Clearly he was not happy in an ordinary care home with a dementia unit. In the meantime the bedwetting is so bad that I cannot understand where all the wee is coming from. I spend hours every day washing and drying stuff. Managed to get some dry outside this week. But most of the winter have had to use tumble dryer and radiators. Its costing me such a lot of money. Can I get help with the cost. My electric is £101 pounds a month now. xxx
     
  4. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Well, baths are pretty slippery dangerous things with the threat of falling and hitting yourself on something very hard, so don't feel too bad about getting rid of yours. It's a constant nightmare at the moment for you, I think a lot of people find this may be the most difficult phase.
    That's a horrendous amount to be spending on electricity. I don't think you can get any specific help, and I assume your OH is getting all the benefits he's entitled to? If you don't get a State pension you can apply for Carer's Allowance, but I'm sure you are aware of all that.

    I know you say he won't shower but if he hates being cleaned would he agree to stand in the shower while you just use it on his bottom? My husband hates showers but he's been much happier since I started at his feet and worked up his body rather than starting washing his hair. By the time I get to his head he's used to the water and doesn't mind so much. I know I'm clutching at straws on your behalf.
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  5. Casbow

    Casbow Registered User

    Sep 3, 2013
    994
    Colchester
    I will try that esmeralda. x
     
  6. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
    William's thing was that he hated being naked in front of anyone, even me ( especially me, actually, as he wasn't sure who I was!). I let him keep a bathrobe on in the shower, and washed him through it. Far from ideal, but better than nothing! Also, I found the bathroom had to be REALLY warm, or he wouldn't cooperate at all! 24-25C or no shower! The poor care assistant used to be dripping with sweat coming out!

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  7. Casbow

    Casbow Registered User

    Sep 3, 2013
    994
    Colchester
    Well. Shock.! He had a shower today. I had a second one trying to sort him out and not upset him. By the time it was over the bathroom was strewn with towels and clothes and goodness knows what. So after that he had breakfast and then slept until lunch and then wasn't keen to go out. This is a big problem. He just doesn't want to go anywhere. I finally managed to get him into the car. Then at the doctors surgery (just to collect medicine) he would not get out of the car. Then he would not get in again. Keeping my patience was becoming very difficult. But I knew if I got cross that would be fatal. As in no-one is going no-where. So the day continued with me treading on eggshells as he refused everything. Wouldn't take his coat off. Wouldn't let me change his pad. Wouldn't eat dinner. Until it was cold.! Then about 7.30 he sat down in the lounge and hasn't moved since., So I suppose I am quite lucky.!!!!!!!!!x
     
  8. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
  9. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    You're amazing Casbow - really.
    Hope today is a bit less stressful Well done that you got him in the shower.
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  10. Casbow

    Casbow Registered User

    Sep 3, 2013
    994
    Colchester
    Today an assessor from the dementia unit came to see what was the best way for our future. I will keep this short as I am very tired and emotional. I cannot fault the lovely lady that came to see us. After about an hour and a half she decided that when the time came David would need to go to a nursing home or at the very least a care home with 24 hour nurse being there. In the conversation we had she said that the time had come for me to make a decision. Could i carry on as I was dealing with everything on my own or should I start thinking of myself and my own health. She said i was nearly at crisis point and needed to start looking after me. So I have made the decision for him to go into the right kind of care. I feel that I have failed. I wanted to see this through to the end. But it is now 10 years. I have no life. What I do have is full of worry. I love him so much. When he is not in a bad place I think how can I put him in a care home. I know him so well. I know how to deal with most things. I know what annoys him. I know what makes him smile. I feel so sad. Sorry.x
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,544
    Kent
    Dear Casbow

    I think those of us who have been there could see this coming.

    You are not alone in being sure you can continue full time caring as long as it was needed and you share your heartbreak with many of us who have been in the same place.

    I was advised I could reach crisis point and not be in a position to research homes and then my husband would be placed in the most convenient home without any input from me.

    You haven`t failed. If you have then all of us who have had to decide on residential care have failed too and I know that is not the case.

    Please try to think of it as having professionals to share the caring. You will have the opportunity to be a part of a team but you will also be able to rest and have some time for yourself.

    It`s a sad time. Your husband has got to the stage where no one can singlehandedly meet his needs. It`s no one`s fault. He is very poorly and needs specialist care.
     
  12. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
    Exactly what Sylvia said. Casbow, if you have "failed" then we have all failed. And I know that that is not true.

    And this way, you will have some input, some say. xx

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  13. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Good that the assessor was so helpful and thorough Casbow. Sometimes we need someone outside the situation to see what needs to be done. So sorry you have to make such a heartbreaking decision.
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  14. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,537
    south-east London
    So sorry to hear that you are in this situation, but as others have said, you have absolutely nothing to feel guilty about, though we understand just how much of a struggle it is to come to this decision.

    I am glad you had such a sharp-minded and lovely assessor who has been able to spot the signs and give you a helping hand and a way forward before crisis hits.

    It sounds like you are both going to be in good hands xx
     
  15. Casbow

    Casbow Registered User

    Sep 3, 2013
    994
    Colchester
    Thankyou all for being so supportive. Today has been quite good. Mostly he has been away with the fairies and having a great time talking to his imaginary friends and playing games with them. so sad but easier to manage.xxxxx
     
  16. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    So sorry you have reached this stage Casbow, but echo what others have said, you have not failed you are still caring but with help from others. You will have input and still be with him when you want to be but people who can go home at the end of their shift will look after him so you can get very much needed rest. Sadly this D journey doesn't always go as we planned, no-one can second-guess the progression as each person is different. xx


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  17. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    96
    I have walked in your shoes Casbow and I know exactly how you feel right now. However your role now is as advocate for your husband in the care home. He still needs you to look after him - toiletries, clothes repair and replacement, taking him out if that is possible and generally being his mouthpiece if things within the home are not going well for some reason. When you have had a rest and feel less stressed you will be able to see that. You are too tired just now. Big hug
     
  18. Casbow

    Casbow Registered User

    Sep 3, 2013
    994
    Colchester
    I have had a very bad night. I have been thinking about David going into a home and apart from the obvious worries about him, I am wondering how on earth I am going to manage money wise. There is going to be so much to sort out. Priority has to be finding the right home of course. That in itself is daunting especially as I only have 3 hours a week to have an appointment. May have to enlist me youngest son and his wife to pre view and then I can go and see a home in my 3 hour break on Fridays. There is not any real hurry but I know when the social worker gets in touch it will all start to become reality. I wish it would all just go away.xx
     
  19. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Casbow, there is absolutely no need to get appointments to visit the care homes you want to see, in fact much better that you just turn up that way you get to see how the place is normally, not just when a visitor is expected. When I was looking for a place for my husband I shortlisted the ones in the area that would take and had facilities for dementia patients and I knocked on their doors and asked to be shown round. The only time to avoid, in fairness to staff and residents, is mealtimes. Once you have got the feeling for the places you like go back again at a different time of the day and definitely get the family to go too so you can share views. Good luck with your search. xx


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  20. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
    That's all very understandable, and feelings I remember well, Casbow. I just wanted to bury my head under the duvet, and forget it all. Or, more accurately, I wanted it all not to ever be happening, for William and I to just drift along contentedly at home as we had done for two years after he had put on medication. Unfortunately, dementia rarely stands still. And yes, your fears for how you will manage financially, I remember too. I did find though that the old adage "Two can live as cheaply as one" is not actually true! One can live quite cheaply indeed!
     

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