I've been really snappy to my poor husband today. It all started because I've been trying out this Michael Mosley 5:2 diet. It means on 2 days I can only eat 500 calories. I stick to it religiously but 6 times today he asked me if I wanted anything to eat. Each time he asked me I reminded him I was fasting, but 6 times he forgot. He did the same thing on the last day I fasted. This is the man who was told 3 weeks ago that his memory is within normal boundaries! The situation isn't helped by the fact he has bad arthritis in his thumb joints and I am now having to cut the hedge and do all the gardening because he can't manage. I don't want to ask someone else to do it because I love my garden and can still do what needs doing, but on top of all the other tasks I now have to do - planning, organising, financial affairs, cleaning etc etc etc, I guess I flipped. I am now wrestling with the guilt and I'm so so angry that we haven't been offered the services of a CPN, or any assessments of need, for him or for me. My blood pressure is way up again. To crown it all our first grand child is due in 4 weeks and I feel much of the pleasure of this very special event has evaporated because of our situation. I'm getting desperate and I just don't know how I can cope with this long term.
Snappy day
- Thread starter Callandergirl
- Start date
It is so hard and some days we all just snap.
Although I think carers are super human, we are underneath it all just like everyone else. We will, no matter how hard we try, just lose it sometimes. Please don't let your guilt take over
Have you approached local Alzheimer's society? If you feel diagnosis wasn't right, they can then perhaps suggest next steps. Also they might advise you on social services assessments. Sounds like you need help now and they might be a good place to start. I found my local one invaluable. Give them a call tomorrow if you can as a start.
Becoming a grandparent soon - that does sound wonderful.
Hope you get something sorted out soon - we all need some help to help us carry on
Although I think carers are super human, we are underneath it all just like everyone else. We will, no matter how hard we try, just lose it sometimes. Please don't let your guilt take over
Have you approached local Alzheimer's society? If you feel diagnosis wasn't right, they can then perhaps suggest next steps. Also they might advise you on social services assessments. Sounds like you need help now and they might be a good place to start. I found my local one invaluable. Give them a call tomorrow if you can as a start.
Becoming a grandparent soon - that does sound wonderful.
Hope you get something sorted out soon - we all need some help to help us carry on
Thank you Eternity for responding to my post. I contacted Alzheimer's society several weeks ago and the lovely lady explained that I needed the diagnosis before I could access any of the assessments etc. My problem is making the professionals see that just because he doesn't fit neatly into their category of dementia, the difficulties he is facing, and hence the difficulties we face as a couple are just as devastating if not more, than if we had a diagnosis and could access some help. Surely after knowing someone for 45 years and having been happily married for 40 of those years they would acknowledge that fighting this lonely battle is not the ideal way for a couple to end their lives together. If the patient is aware of the anxiety levels of a partner that is surely detrimental to the progress of the disease. Sorry to moan and I really do appreciate that you took the time to read this. We see the consultant on Tuesday and I 'll be making my feelings very plain. I'll let you know how we get on.
Morning:
I just wondered what they used to assess his memory-why they say it is within normal? My husband still scores quite highly on the mini memory test-but his consultant and nurse are aware that he uses his high IQ to compensate -they know it's not a true picture and the more complex test they use (Addenbrooks? Not sure) shows a marked decline.
I keep a log of any changes/events I've noticed and email that to them a week before his next assessment. That also helps them to have a truer picture, especially as he is in total denial and tells them a lot of 'white lies' about what he does during the day. If they believed him, they would think they were dealing with a man who does the housework, goes for a run, goes swimming etc...whereas the reality is he does nothing but sit and stare, unless I direct him.
I would take as much detail as possible to your meeting -written down so they have it on file and you don't have to say it all in front of your OH. It also stops you forgetting bits-which I tended to do before adopting this system!
Hope you get better results from the next visit.
Sah.
I just wondered what they used to assess his memory-why they say it is within normal? My husband still scores quite highly on the mini memory test-but his consultant and nurse are aware that he uses his high IQ to compensate -they know it's not a true picture and the more complex test they use (Addenbrooks? Not sure) shows a marked decline.
I keep a log of any changes/events I've noticed and email that to them a week before his next assessment. That also helps them to have a truer picture, especially as he is in total denial and tells them a lot of 'white lies' about what he does during the day. If they believed him, they would think they were dealing with a man who does the housework, goes for a run, goes swimming etc...whereas the reality is he does nothing but sit and stare, unless I direct him.
I would take as much detail as possible to your meeting -written down so they have it on file and you don't have to say it all in front of your OH. It also stops you forgetting bits-which I tended to do before adopting this system!
Hope you get better results from the next visit.
Sah.
Hi Sah,
I took your advice and wrote down a lot of things under various headings - Behaviour, Social skills, concentration and memory - and took them to our meeting today. I had to read them to the doctor in front of my husband but he doesn't mind that. Anyway I told her that their memory tests do not seem to be hitting the spot. She has asked hubby if he would like to join a research project and as part of this project he would be tested much more rigorously than he has been, which is good. She assured us he does not have Alzheimer's but she can't say if he has dementia, although she says it could be frontal, temporal in nature. So we still don't have a diagnosis except for executive dysfunction. I also asked about us being assigned a CPN and she asked me why. I said to speak to someone about strategies, and just being able to speak to someone more often than once a year, which is all we get at the moment. She agreed to this. I still feel really down and see my retirement since all this started as one long narrow tunnel, instead of a new life opening up ahead of us. I dare say in a few days I'll turn my thinking around but at the moment I'm too tired.
I took your advice and wrote down a lot of things under various headings - Behaviour, Social skills, concentration and memory - and took them to our meeting today. I had to read them to the doctor in front of my husband but he doesn't mind that. Anyway I told her that their memory tests do not seem to be hitting the spot. She has asked hubby if he would like to join a research project and as part of this project he would be tested much more rigorously than he has been, which is good. She assured us he does not have Alzheimer's but she can't say if he has dementia, although she says it could be frontal, temporal in nature. So we still don't have a diagnosis except for executive dysfunction. I also asked about us being assigned a CPN and she asked me why. I said to speak to someone about strategies, and just being able to speak to someone more often than once a year, which is all we get at the moment. She agreed to this. I still feel really down and see my retirement since all this started as one long narrow tunnel, instead of a new life opening up ahead of us. I dare say in a few days I'll turn my thinking around but at the moment I'm too tired.
Hi Callandergirl
I do hope that they listened to you about the CPN, we had one assigned to hubby and she was a tower of strength. OH felt he could trust her and they really got on. I also leaned on her towards the end and she found us a super Social Worker. They both worked hard with us and in the end helped when hubby was sectioned and again when we applied for NHS Continuing Health Care. OH has now been in a nursing home for a month.
I also went to see out GP who knew about OH and asked him for anti depressants and registered with the practice as a carer. Doing this has meant that whenever I ring the practice for an appointment or need help or assistance then they listen to me and act promptly.
Sorry to rabbit on but I hope something might help.
Best of luck, Benjie
I do hope that they listened to you about the CPN, we had one assigned to hubby and she was a tower of strength. OH felt he could trust her and they really got on. I also leaned on her towards the end and she found us a super Social Worker. They both worked hard with us and in the end helped when hubby was sectioned and again when we applied for NHS Continuing Health Care. OH has now been in a nursing home for a month.
I also went to see out GP who knew about OH and asked him for anti depressants and registered with the practice as a carer. Doing this has meant that whenever I ring the practice for an appointment or need help or assistance then they listen to me and act promptly.
Sorry to rabbit on but I hope something might help.
Best of luck, Benjie
