How to go forward from here?

[gillsil]

This is the first time I have posted here although I have been reading the forums for information and support since my husband was diagnosed with early onset dementia over 2 years ago at the age of 56. Today for the first time I really don’t know how to go forward and could really do with some ideas and support.

His dementia has progressed quite quickly and for some time he has needed help with dressing and has been unable to do any household tasks for himself like making a cup of tea. I am doing a part time course which means that I am out of the house for one weekend a month plus two long mornings each week and so far we have just about managed with creative ways to enable him to be ok on his own while I’m not there.
Recently though we have entered new territory as he is now unable to use the toilet and wipe himself properly with the result that last night I was having to clean faeces off almost every surface in the bathroom. I am happy to do the wiping / cleaning up when I am there but I am really anxious as to how we are going to manage when I am on my course this weekend and out of the house from 8.30am to 5.30pm.

What makes the situation worse is that we have a teenage son still living at home who is already struggling to cope with his dad’s illness, exam stress of his A level year and the usual teenage issues. I feel we have reached the point where our home is simply not a suitable environment for him to be in for his mental health. I feel we could go on if I could be with my husband 24/7 but that is impossible and also wouldn’t be sustainable for me. Are we looking at residential care? And what am I going to do over this weekend? I don’t think respite care is an option as almost nowhere will take him due to him being under 65 and he is already on the waiting list for the one place that will with no spaces at present.

Apologies for the very long post but I am all out of ideas... thank you in advance for any thoughts!

 

[marionq]

Would it be possible to get an agency carer privately or through social services to cal in twice a day to help him wash and make him a meal. Phone SS and tell them how vulnerable he is. They must help.

 

[DennyD]

Dear gillsil, I wish I could give you advice and reassurance. I work 4 days per week (1 from home), and increasingly feel more anxious about leaving my husband alone. I had to ask my manager this morning to be excused and go home as he thought the house was going to catch fire. As mentioned by marionq is to perhaps consider a caring/sitting service. I personally feel very uncomfortable about this but am starting to realise that at some point I will have to bite the bullet.
I don't know what the answer is, whatever you decide, remember that you are making decisions based on what you believe is right for you and your family. Take care.

 

[kindred]

This is the first time I have posted here although I have been reading the forums for information and support since my husband was diagnosed with early onset dementia over 2 years ago at the age of 56. Today for the first time I really don’t know how to go forward and could really do with some ideas and support.

His dementia has progressed quite quickly and for some time he has needed help with dressing and has been unable to do any household tasks for himself like making a cup of tea. I am doing a part time course which means that I am out of the house for one weekend a month plus two long mornings each week and so far we have just about managed with creative ways to enable him to be ok on his own while I’m not there.
Recently though we have entered new territory as he is now unable to use the toilet and wipe himself properly with the result that last night I was having to clean faeces off almost every surface in the bathroom. I am happy to do the wiping / cleaning up when I am there but I am really anxious as to how we are going to manage when I am on my course this weekend and out of the house from 8.30am to 5.30pm.

What makes the situation worse is that we have a teenage son still living at home who is already struggling to cope with his dad’s illness, exam stress of his A level year and the usual teenage issues. I feel we have reached the point where our home is simply not a suitable environment for him to be in for his mental health. I feel we could go on if I could be with my husband 24/7 but that is impossible and also wouldn’t be sustainable for me. Are we looking at residential care? And what am I going to do over this weekend? I don’t think respite care is an option as almost nowhere will take him due to him being under 65 and he is already on the waiting list for the one place that will with no spaces at present.

Apologies for the very long post but I am all out of ideas... thank you in advance for any thoughts!

Sweetheart, this is a very tough one, do understand. I'm not sure how you manage this weekend, it is all about taking risks, I know, but this puts you in such a nervous state wondering what is going on at home.
Residential care is not the end of the world. I was forced into it in the end by a bad accident and appalling experiences at home.
warmest, and all thoughts,Geraldine aka kindred.

 

[nae sporran]

Belated welcome to the forum @gillsil. That is hard work for you and fr your son, I was just going to say the same as Marion about getting outside carers in to help and a maybe a befriending scheme for the part of the weekend. Both have taken a lot of strain from me over the years. You should certainly speak to social services about a care needs assessment for your husband a carers assessment for yourself to raise these concerns with Social Services.

 

[gillsil]

Thank you all so much for your replies and kind words. I have been on to social services and care agencies and I will be able to get carers in going forward though no luck with this weekend so far. I have to dash out now but will respond again when I get home.

 

[PalSal]

This is the first time I have posted here although I have been reading the forums for information and support since my husband was diagnosed with early onset dementia over 2 years ago at the age of 56. Today for the first time I really don’t know how to go forward and could really do with some ideas and support.

His dementia has progressed quite quickly and for some time he has needed help with dressing and has been unable to do any household tasks for himself like making a cup of tea. I am doing a part time course which means that I am out of the house for one weekend a month plus two long mornings each week and so far we have just about managed with creative ways to enable him to be ok on his own while I’m not there.
Recently though we have entered new territory as he is now unable to use the toilet and wipe himself properly with the result that last night I was having to clean faeces off almost every surface in the bathroom. I am happy to do the wiping / cleaning up when I am there but I am really anxious as to how we are going to manage when I am on my course this weekend and out of the house from 8.30am to 5.30pm.

What makes the situation worse is that we have a teenage son still living at home who is already struggling to cope with his dad’s illness, exam stress of his A level year and the usual teenage issues. I feel we have reached the point where our home is simply not a suitable environment for him to be in for his mental health. I feel we could go on if I could be with my husband 24/7 but that is impossible and also wouldn’t be sustainable for me. Are we looking at residential care? And what am I going to do over this weekend? I don’t think respite care is an option as almost nowhere will take him due to him being under 65 and he is already on the waiting list for the one place that will with no spaces at present.

Apologies for the very long post but I am all out of ideas... thank you in advance for any thoughts!

 

[PalSal]

@gillsil Boy am I feeling your pain. My youngest was 11 when our journey with his dad*s Alzheimers began. Nick was (49) and I was (48). So, I think understand you problems and issues.
I am not in the UK although my husband is English we live in Switzerland.
So, I was unaware of this respite thing##that a person must be 65!!! That is so crazy, so you are not illegible even though your husband is clearly so needy impaired and diagnosed.
I feel so bad for you.
We have never used respite and only now use a daycare once a week. Somehow, we managed for many years when I was not around and still working to hire our dear old housekeeper to come and be with him. Now the last 5 years or so I have a team of 3 hired carers and one volunteer. When I have travelled away on my own I have asked his family to help on two ocassions. My children now come and help that 11 year old son is now 26, he is one of my best supporters and comes weekly and cares for his dad and gives me a night off.
I am outraged for you that you are not illegible for respite because of his age….are they unaware that Alzheimers can strike before one is a pensioner! I hope some people here on TP or the Alzheimers Association itself can change this terrible rule ...which clearly does not recognise the suffering of the young victims and their families. I want to use four letter words but am restraining myself. I hope you get some much needed help.

 

[annierich]

This is the first time I have posted here although I have been reading the forums for information and support since my husband was diagnosed with early onset dementia over 2 years ago at the age of 56. Today for the first time I really don’t know how to go forward and could really do with some ideas and support.

His dementia has progressed quite quickly and for some time he has needed help with dressing and has been unable to do any household tasks for himself like making a cup of tea. I am doing a part time course which means that I am out of the house for one weekend a month plus two long mornings each week and so far we have just about managed with creative ways to enable him to be ok on his own while I’m not there.
Recently though we have entered new territory as he is now unable to use the toilet and wipe himself properly with the result that last night I was having to clean faeces off almost every surface in the bathroom. I am happy to do the wiping / cleaning up when I am there but I am really anxious as to how we are going to manage when I am on my course this weekend and out of the house from 8.30am to 5.30pm.

What makes the situation worse is that we have a teenage son still living at home who is already struggling to cope with his dad’s illness, exam stress of his A level year and the usual teenage issues. I feel we have reached the point where our home is simply not a suitable environment for him to be in for his mental health. I feel we could go on if I could be with my husband 24/7 but that is impossible and also wouldn’t be sustainable for me. Are we looking at residential care? And what am I going to do over this weekend? I don’t think respite care is an option as almost nowhere will take him due to him being under 65 and he is already on the waiting list for the one place that will with no spaces at present.

Apologies for the very long post but I am all out of ideas... thank you in advance for any thoughts!

I don’t know where in the country you are but I live near Harrogate in North Yorkshire where there is a Dementia Care Home which has a unit for ‘younger’ people. Surely it can’t be the only such unit in the UK? My FIL was in the non younger part of the Care Home for a few weeks and the care he received was wonderful.
Sadly your husband will only deteriorate and you’ve said that your son is struggling with A levels and his father. Would such a residential placement be beneficial for your husband, do you think? Your son could relax a bit and you could continue your course while still caring for your husband, albeit in a slightly different way.

 

[gillsil]

Thank you all again. As an update I have managed to find a day care centre where he can go on Saturday though they are closed on Sunday so I think we will just have to manage with him at home that day. I have found out that there is an urgent response team who would come out to him if anything disasterous happened.
Going forward I am looking into some home care and have organised an assessment next week with an agency and a very helpful Social Services officer is looking into possibilities for respite care. I had a chat with our son at lunchtime and he feels that we are at the point as a family with not being able to cope with his dad living at home so with a heavy heart I am also going to pursue long term care possibilities.
I am still a bit despairing at the lack of provision for people with young onset dementia (I’m in Norfolk and we are fortunate to have a privately run day centre with one day dedicated to younger people but there seems to be very little else) but I’m certainly feeling less panicked than I did this morning. I can’t quite work out how to post individual replies to your responses so apologies for not doing that but I really really appreciate all your support and concern

 

[nellbelles]

Hello @gillsil welcome, I’m glad you found the forum and I hope you can find the support you need here.
I wonder if the following link would be helpful to you?
https://www.alzheimers.org.uk/find-support-near-you

I hope now you have found us you will continue to post