I have been looking after my partner of 35 years at home. Looking back, Alan has been going a little odd mentally for some years but this has not been apparent to outsiders, though I have been anticipating AD for some time - my mother suffered from it for some ten years so I recognised some of the signs. (She was looked after brilliantly by my father, also in his eighties/nineties, who was a resourceful and devoted husband.)
I had mentioned to our GP that I was worried about Alan and his memory problems as he is a Type 2 diabetic and might be forgetting to take his proper medication. The GP talked with him and consequently referred him to the Memory Clinic of the community mental health team. At the end of January this year Alan had a fall in the street, was helped by kind strangers and taken to our local hospital. Following on from that and the GP's referral he has had many investigations: a long consultation with the Geriatric consultant, psychiatric assessment, Occupational Therapy assessment, Speech and Language therapist, CT scan, ECG, MRI, plus EEG to come soon. I cannot fault the attention he has had from the NHS. It seems that in addition to developing dementia he has probably had a small stroke. This means that in addition to his previous mental problems he now has extreme difficulty finding words and completing sentences, and physical problems with walking and eating, dressing, washing, etc. Not to mention problems with getting to the loo in time..... And a number of falls, mostly overbalancing backwards and ending up like a sheep with his legs in the air. This has all been possible to deal with, though his abilities have been gradually decreasing.
Now the situation has worsened. On Tuesday, the day before yesterday, we had an appointment with the OT and went there and back by minicab - it's only about seven minutes' walk away, but too much for him to walk now. He managed with great difficulty to get out of the cab and to our front door, then it was a big struggle to help him up the single flight of stairs to our first floor flat. At the top he collapsed in a heap. I tried for a long time to help him up, but he's quite a big chap and though I could get him to his feet briefly he immediately collapsed over to his right side and could not be persuaded to walk. After a rest for both of us, I hit on the idea of using a large towel rolled up to make a sling under his arms which made it much easier to lift him and hold him up. (This is my Top Tip for the week and I'm rather proud of my invention!) So after over an hour of struggle I got him on to the sofa in his usual TV-watching seat. And there he was stuck all evening and night. I had hoped that he would be better after a night's sleep, but he was just as helpless in the morning. I realised that I could not cope: a night on the sofa is a possible - with "breakfast in bed" and a handy pee jar (I can recommend an empty Candarel jar) - but not for longer. So I called an ambulance, stating that this was not an emergency. They came very quickly, were sympathetic and helpful, got Alan down the narrow stairs with some difficulty, and we were in the local hospital A&E within an hour of my phone call.
There he was triaged, assessed by doctor, lots of tests, assessment by another doctor, and kept in overnight. They think that antibiotics to treat possible chest infection may help his general condition.
Sorry about that very long background story, but if you're still with me, here are my current problems:
If Alan can't walk at all I don't know how I could look after him at home. We live in a smallish one-bedroom flat, the upper storey of a terraced house. I own the whole house so we could possibly move downstairs to the lower flat, but that doesn't solve immobility within the flat. In either flat we have a living room, bedroom, small bathroom, and kitchen.
The doctor last night expressed surprise that I had not been offered any care help so far, but in fact this is not surprising as things have moved at such a pace since January and the situation changes day by day. I am not sure how carers coming in would be able to help.
I have to face the fact that Alan may have to go into some sort of care, though a few weeks ago he asked me out of the blue not to send him away, he wanted to stay at home. I know nothing yet about care homes or nursing homes and I know I have a lot of homework to do.
Finances: We chose not to marry, though free to do so, and have always kept our finances quite separate. He has his state pension and a very small work pension. I have the same, plus some savings and income from capital which puts me above the various "means tested" benefits - and therefore also excludes Alan as a partner who lives "as if married" to me. He is 77, I am 67. I do know about Attendance Allowance being not means-tested and may apply for it.
I don't yet know how finances for care homes work - when fees are payable and whether I would be responsible for Alan's care. That would soon take care of my "excess income".
I was planning to get him to make a will and do an EPA but I think the moment may have passed. He now has great difficulty signing his name, even with me dictating the spelling of it. Though interestingly enough, his bank has accepted his current signature on cheques, scrunched up and unrecognisable as it is. He had made a will long ago but this will now be invalid due to his divorce thirty-four years ago. He had two children, now grown up, but has no contact with them now.
Well if you've got this far reading our autobiography, thank you very much for your patience. Any advice on what next will be welcome, particularly on the legal effects of not being married. So far the hospital has always accepted me as next-of-kin (though with no proof except my say-so). On a happier note, during one of the endless memory tests last night the doctor asked him who I was and he replied "she's my sweetheart".
Now I must get back to duty and contact the hospital to find out what's next. Fortunately it's just a short walk away.
Regards to all. Rhoda.
I had mentioned to our GP that I was worried about Alan and his memory problems as he is a Type 2 diabetic and might be forgetting to take his proper medication. The GP talked with him and consequently referred him to the Memory Clinic of the community mental health team. At the end of January this year Alan had a fall in the street, was helped by kind strangers and taken to our local hospital. Following on from that and the GP's referral he has had many investigations: a long consultation with the Geriatric consultant, psychiatric assessment, Occupational Therapy assessment, Speech and Language therapist, CT scan, ECG, MRI, plus EEG to come soon. I cannot fault the attention he has had from the NHS. It seems that in addition to developing dementia he has probably had a small stroke. This means that in addition to his previous mental problems he now has extreme difficulty finding words and completing sentences, and physical problems with walking and eating, dressing, washing, etc. Not to mention problems with getting to the loo in time..... And a number of falls, mostly overbalancing backwards and ending up like a sheep with his legs in the air. This has all been possible to deal with, though his abilities have been gradually decreasing.
Now the situation has worsened. On Tuesday, the day before yesterday, we had an appointment with the OT and went there and back by minicab - it's only about seven minutes' walk away, but too much for him to walk now. He managed with great difficulty to get out of the cab and to our front door, then it was a big struggle to help him up the single flight of stairs to our first floor flat. At the top he collapsed in a heap. I tried for a long time to help him up, but he's quite a big chap and though I could get him to his feet briefly he immediately collapsed over to his right side and could not be persuaded to walk. After a rest for both of us, I hit on the idea of using a large towel rolled up to make a sling under his arms which made it much easier to lift him and hold him up. (This is my Top Tip for the week and I'm rather proud of my invention!) So after over an hour of struggle I got him on to the sofa in his usual TV-watching seat. And there he was stuck all evening and night. I had hoped that he would be better after a night's sleep, but he was just as helpless in the morning. I realised that I could not cope: a night on the sofa is a possible - with "breakfast in bed" and a handy pee jar (I can recommend an empty Candarel jar) - but not for longer. So I called an ambulance, stating that this was not an emergency. They came very quickly, were sympathetic and helpful, got Alan down the narrow stairs with some difficulty, and we were in the local hospital A&E within an hour of my phone call.
There he was triaged, assessed by doctor, lots of tests, assessment by another doctor, and kept in overnight. They think that antibiotics to treat possible chest infection may help his general condition.
Sorry about that very long background story, but if you're still with me, here are my current problems:
If Alan can't walk at all I don't know how I could look after him at home. We live in a smallish one-bedroom flat, the upper storey of a terraced house. I own the whole house so we could possibly move downstairs to the lower flat, but that doesn't solve immobility within the flat. In either flat we have a living room, bedroom, small bathroom, and kitchen.
The doctor last night expressed surprise that I had not been offered any care help so far, but in fact this is not surprising as things have moved at such a pace since January and the situation changes day by day. I am not sure how carers coming in would be able to help.
I have to face the fact that Alan may have to go into some sort of care, though a few weeks ago he asked me out of the blue not to send him away, he wanted to stay at home. I know nothing yet about care homes or nursing homes and I know I have a lot of homework to do.
Finances: We chose not to marry, though free to do so, and have always kept our finances quite separate. He has his state pension and a very small work pension. I have the same, plus some savings and income from capital which puts me above the various "means tested" benefits - and therefore also excludes Alan as a partner who lives "as if married" to me. He is 77, I am 67. I do know about Attendance Allowance being not means-tested and may apply for it.
I don't yet know how finances for care homes work - when fees are payable and whether I would be responsible for Alan's care. That would soon take care of my "excess income".
I was planning to get him to make a will and do an EPA but I think the moment may have passed. He now has great difficulty signing his name, even with me dictating the spelling of it. Though interestingly enough, his bank has accepted his current signature on cheques, scrunched up and unrecognisable as it is. He had made a will long ago but this will now be invalid due to his divorce thirty-four years ago. He had two children, now grown up, but has no contact with them now.
Well if you've got this far reading our autobiography, thank you very much for your patience. Any advice on what next will be welcome, particularly on the legal effects of not being married. So far the hospital has always accepted me as next-of-kin (though with no proof except my say-so). On a happier note, during one of the endless memory tests last night the doctor asked him who I was and he replied "she's my sweetheart".
Now I must get back to duty and contact the hospital to find out what's next. Fortunately it's just a short walk away.
Regards to all. Rhoda.