Social Service Assessments

[Rosebay]

I have had a phone call about a visit for a carers assessment and to talk to my husband about any support required. This was a memory clinic referral. As my husband does not know there is anything wrong with him and does not like strangers in the house - we get enough imaginary ones as it is! - I have declined this visit. He is well into the middle stage of this condition. Did I make the right decision? What is the point of an assessment? Yes some days are very difficult and I am so tired but I dont feel like I can share this with Social Services. My latest plan - not really sure if it is realistic - is to look after my husband at home with help for as long as I am able to so that I can look back and know that I did the best I could for as long as I could. We have been together for 44 years now - I was 18 when we met - and I just cant let go of the responsibility to care for him whilst he still has some recognition of me.

 

[Beate]

Accepting help does not mean surrendering responsibility and it's not a sign of weakness! If you do everything on your own 24/7 you will burn out very quickly. I simply couldn't do it without day care, sitting service and respite but we still spend a lot of time together. Please go back to social services and say you've changed your mind. Tell them how you feel and see what they say. They could also arrange visits from an OT or telecare and signpost you to local carers organisations.

 

[balloo]

Accepting help does not mean surrendering responsibility and it's not a sign of weakness! If you do everything on your own 24/7 you will burn out very quickly. I simply couldn't do it without day care, sitting service and respite but we still spend a lot of time together. Please go back to social services and say you've changed your mind. Tell them how you feel and see what they say. They could also arrange visits from an OT or telecare and signpost you to local carers organisations.

we have been looking after MIl for 3 years and she lives with us she is i would say last stage and only help we have is a sitting service ,MIL would not enjoy day care as never was socialble so what point paying for something she would not enjoy. Respite round us is £1000 a week a minimum for 2 weeks alothough have found crossroads who have been renamed do 72 hrs in yor home trying that but only for 36 hrs as going to london for a night and day. i do my best include personal care as she incontinent now.
it can be done alone but hard work

 

[bemused1]

Accepting help does not mean surrendering responsibility and it's not a sign of weakness! If you do everything on your own 24/7 you will burn out very quickly. I simply couldn't do it without day care, sitting service and respite but we still spend a lot of time together. Please go back to social services and say you've changed your mind. Tell them how you feel and see what they say. They could also arrange visits from an OT or telecare and signpost you to local carers organisations.

I agree totally with Beate on this. Don't turn down any offers of help, it is not surrender its just acknowledging you are human. It's not being any less caring to accept other help., in fact I would say quite the opposite.

 

[Sue J]

Hi Rosebay, am sure your husband, before he was ill, would have wanted you to have help and not struggle on your own if there is some help available which will ease things for you, you'll be a better carer to him if you can look after you, not easy to receive though after so long of being together and doing it alone. Could you go somewhere else to discuss what would help, rather than at home, if you can get someone to sit of course, you only have to accept the help you want.

Best wishes
Sue

 

[Scarlett123]

I have had a phone call about a visit for a carers assessment and to talk to my husband about any support required. This was a memory clinic referral. As my husband does not know there is anything wrong with him and does not like strangers in the house - we get enough imaginary ones as it is! - I have declined this visit. He is well into the middle stage of this condition. Did I make the right decision? What is the point of an assessment? Yes some days are very difficult and I am so tired but I dont feel like I can share this with Social Services. My latest plan - not really sure if it is realistic - is to look after my husband at home with help for as long as I am able to so that I can look back and know that I did the best I could for as long as I could. We have been together for 44 years now - I was 18 when we met - and I just cant let go of the responsibility to care for him whilst he still has some recognition of me.

As help in some areas is rarer than hen's teeth, accept anything that is offered. I used to type up a statement called "To Whom It May Concern", and I listed everything that was wrong about my husband, also that he was in complete denial, incidents that had happened, disturbed nights, imaginary visitors - the lot.

I made sure there were lots of paragraphs, making it easier to read, and I updated it regularly. So when a visitor called, I would give them a copy, ask John to help me in the kitchen whilst I made drinks, and he would spend ages arranging a dozen biscuits on a plate, and then when we returned to the living room, the visitor knew the score.

If we had an appointment, anywhere medical, I would give a copy, in an envelope, to the receptionist and ask that it be given to Dr Whatever, prior to our appointment. That way, everyone knows the situation. Hope that helps.

 

[Casbow]

Social services assessments

As help in some areas is rarer than hen's teeth, accept anything that is offered. I used to type up a statement called "To Whom It May Concern", and I listed everything that was wrong about my husband, also that he was in complete denial, incidents that had happened, disturbed nights, imaginary visitors - the lot.

I made sure there were lots of paragraphs, making it easier to read, and I updated it regularly. So when a visitor called, I would give them a copy, ask John to help me in the kitchen whilst I made drinks, and he would spend ages arranging a dozen biscuits on a plate, and then when we returned to the living room, the visitor knew the score.

If we had an appointment, anywhere medical, I would give a copy, in an envelope, to the receptionist and ask that it be given to Dr Whatever, prior to our appointment. That way, everyone knows the situation. Hope that helps.

Oh Scarlett I wish I had done this. The problem is I hate talking about him when he is sitting there. Sometimes it seems to go straight over his head and others he just explodes and calls me a liar. 5 seconds later he has no recollection of anything that has been said. Also I don't think I give enough information. Social worker came here 2 weeks ago and I don't think I will get what I asked for. Which was 4 or 5 hours once a week in day centre. Two day centres had him last year and both said they couldn't keep him as he paced all the time, and was disruptive. So hey welcome to my world. I have 2 hours a week from Crossroads but use that for a weekly shop, or hairdressers. Because of where I live I can't make better use of 2 hours. So next time I will make sure everything is written down. Good advice for all Scarlett. x

 

[Scarlett123]

This is the reason why, 15 months on, I still post on here. All the tips I picked up, and things I thought of myself, are some of the ammunition a carer needs to fight their own Alzheimer's War. But it's a slow learning curve, and you can't think of everything.

Once I hit on this idea of a Statement, it slashed my anxiety levels, when being seen by "a professional", to zilch. Everything they needed to know was there, they only had to make small talk with John and I, instead of asking pertinent questions, that required answers that John would vehemently disagree with.

When he was interviewed by the Care Home Manager, prior to his respite (which became permanent), she shook hands with us both, got out her notebook, and I immediately said "tea or coffee?".

Then, with a fluid movement, I passed her the Statement, took John's hand, and took him into the kitchen with me, and he did his biscuit arranging, whilst I made the drinks. I also listed at the top his NI number, NHS number, Hospital number, all pertinent phone numbers, and his allergies.

Then, on the accompanying sheet I listed all medications, and frequency, even though I was providing Dossett Packs. I kept peeking round the door, and only brought the refreshments in when I saw the Manager replace her pristine notebook in her bag.

I'd also listed his hobbies, things he liked to chat about (the Army, football, snooker etc), and food likes and dislikes, even including how many sweeteners he liked in his drinks. My mantra, when I was a Business Studies Teacher, was "failure to prepare, is to prepare for failure", and if you've covered every angle, without having to say a word, it helps so much, and I hope it will help others too.

 

[Rosebay]

Thank you

Thank you all for your responses I have asked for a home visit with our Memory Clinic Psychatrict Nurse. I am still a little unclear in my own mind what to do about the social services assessment. I think I feel at this stage of his condition it would be better for him to have home sitters so that I can escape for an hour even if its just upstairs catching up on paperwork but then ... wouldn't it be lovely to have a whole day without worrying. He is very clingy at the moment and even getting him to a day centre would be very stressful. I wish there were day centres for younger sufferers which would then make the decision a bit easier for me. I too have had problems explaining what is going on in front of my husband so what a brilliant idea from Scarlet123 to pass on a letter thank you so much for that.

 

[InnerGeek]

Hi Rosebay, it's so difficult to find the right support for the both of you isn't it? It might be worth you looking into your local day centres for you to both attend as a couple if your husband needs to have you around constantly. My dad goes to a day centre where they welcome carers free of charge so that you can both go and socialise together, but the stress is off you to be the sole entertainer if that might help you? You might also be able to slip out for an hour's shopping or just to sit and have a coffee on your own and watch the world go by, too. Good luck with the memory clinic home visit, too.