My husband's diagnosis

[squinge]

Hi. I am new here too - my partner was diagnosed about four weeks ago. I feel the same as May1 in that I just don't know what to do. My partner is 64 and is also visually impaired - he had to take early retirement in 2010 because of this. I am 47 and we have a son aged 15. Since his diagnosis it's almost like he has thought to himself "Right that's it - I'm going to open my floodgates and let this thing in". I have had to rush forward contact with the local dementia support team (social work, nurses etc) as I haven't had a full nights sleep for about a fortnight now. Nights are awful - and a different behaviour each time - swearing some nights, dressing and undressing all night other times etc. But all nights are bound together by him not knowing who I am or who he is/where he is. He doesn't know who our son is either when he is like this - and that's heartbreaking. He needs reassurance each night about who I am and stays awake all night taking loudly and shaking me to ask me questions about what I am doing there. The support team say that they need to do a 4-6 week assessment before they will consider medication for his nights. In the meantime I am shattered from lack of sleep and trying to hold down a full time job as a teacher - I'm the sole breadwinner in the family now and I have a mortgage to pay (the house is in my name), as well as all the bills and the responsibility of supporting my partner and our son. I am trying so hard to stay positive but its so difficult when I have friends and relatives all pressurising me to push the doctors and social workers for more help. What kind of help? I don't want my partner to go into care at the moment - I just want to be able to sleep at night really! Anyway I'm sorry for the maybe dramatic introduction to myself but it does help to be on here knowing that I am not alone

 

[Izzy]

Hi Squinge.

Welcome to TP. I'm so sorry to read about your husband's recent diagnosis. It sounds like you're having a really bad time. I wondered if you could ask your support team if there's any chance of getting some night sits for your husband to allow you to get some sleep. That, of course would only work if you had another room to sleep in during the sits or if you go sleep over at a friend's or relative's house.

I know how hard it is to cope with this kind of thing when you are working full time. I'm retired now but used to be a primary school headteacher and had both my mum and my husband with dementia. I hope you have had a chat with your own headteacher to let him/ her know of the situation. I hope that you will find the management supportive.

I'm glad you have found TP and know you will find lots of support on the forum.

Take care.

 

[marionq]

I think the withholding of sleeping tablets is unreasonable in the circumstances. As yet another schoolteacher I know only too well the impossibility of you or your son continuing to sustain normal school life without sleep.

I think you have to have to alert your own GP to this dire situation and ask what is to be done to prevent a breakdown in your own health. They may have to assess him within a respite situation

 

[jaymor]

Hello Squinge and welcome from me too.

Please continue to ask for help. 4-6 weeks is a long time to wait for any help when you are both suffering so badly. The reality of coping alone with your husband's condition, full time work, a home, a teenager and no sleep is that you too could become ill and then there are two people needing help.

My husband had a 12 hour clock that started at 8am, difficult days but mostly manageable until we reached mid afternoon when the dreaded 'sun downing ' began. Then at 8pm we were back to living as if it was 8am and we had things to do and places to go. Where were we going, who would we see, why was I not ready to go out. We needed to get some new shoes, a table, towels, and so it went on. Reading your post brought it all back and I do understand how difficult it is and how much you really do need help now, not in 6 weeks time.

Have you spoken to your own doctor, ours was very understanding and prescribed sleeping tablets, though they had little effect so short lived.

Please keep posting, I am sure members will have some ideas that might help but keep on at the professionals, they need to help now.

Take care.

 

[esmeralda]

Hi Squinge, welcome from me too. Your situation sounds horrendous. I can't really add to the advice from people who have had similar experiences to yours, tragic that you are both so young to be going through this. How is your son coping? It must be awful for him to see this happening to his dad and the effect it is also having on you. He is in effect a young carer, I hope Social Services are assessing his needs as well.

 

[Feline]

Hi. I am new here too - my partner was diagnosed about four weeks ago. I feel the same as May1 in that I just don't know what to do. My partner is 64 and is also visually impaired - he had to take early retirement in 2010 because of this. I am 47 and we have a son aged 15. Since his diagnosis it's almost like he has thought to himself "Right that's it - I'm going to open my floodgates and let this thing in". I have had to rush forward contact with the local dementia support team (social work, nurses etc) as I haven't had a full nights sleep for about a fortnight now. Nights are awful - and a different behaviour each time - swearing some nights, dressing and undressing all night other times etc. But all nights are bound together by him not knowing who I am or who he is/where he is. He doesn't know who our son is either when he is like this - and that's heartbreaking. He needs reassurance each night about who I am and stays awake all night taking loudly and shaking me to ask me questions about what I am doing there. The support team say that they need to do a 4-6 week assessment before they will consider medication for his nights. In the meantime I am shattered from lack of sleep and trying to hold down a full time job as a teacher - I'm the sole breadwinner in the family now and I have a mortgage to pay (the house is in my name), as well as all the bills and the responsibility of supporting my partner and our son. I am trying so hard to stay positive but its so difficult when I have friends and relatives all pressurising me to push the doctors and social workers for more help. What kind of help? I don't want my partner to go into care at the moment - I just want to be able to sleep at night really! Anyway I'm sorry for the maybe dramatic introduction to myself but it does help to be on here knowing that I am not alone

Welcome from me aswell,
I agree, you need some help here and now, not six weeks time, are you able to take some compassionate leave under the caring role of family member, (NUT should support you if necessary) and go to GP /consultant , so that they really know you need help with this particular situation. I wish you all the best, sorry I can't think of more than has already been said. Take care.