husb 64 caring for wife 67 seeks advice. would value others experience. maybe find similar others with similar sits?
Chris has other problems as well as AD. She has taken Thyroxine for 18yrs after thyroid cancer operation. High doses of this ?caused osteoporosis. AD started in 1999 with "eyes slipping" - ie unable to read across the page. The Neurologist who saw her in 2001 annoyed her when he asked for name of Osama bin laden 2 weeks after 9/11 and she couldnt answer. She never liked him after that, a "nasty man". He said her symptoms were atypical. Mainly clumsiness at first, couldnt use phone pad, TV remote, problems dressing; At that time could chat OKish. Eventually she had a brain biopsy in 2005 just in case she had some inflammatory brain disease which treatment could help, but result was AD anyway.
After the biopsy she had fits. In the first one her back arched and made a "crack". I got her on the kitchen floor and later she went back in hospital. No one realised how much pain she had. She screamed especially when she was pulled up to get out of a wet bed (other patients told me) Xrays showed 3 spine fractures. May have been there a while before but cracked more in the fit. The fits settled after some months although at times she looks faint as if another might come. But the back pain continues and its difficult to get the medication balanced. Nurses suggested patch type painkiller but they make her more irritable. Sticking to Paracetamol for now.
Seems to have lost all sense of direction now, walks into blind corners, mostly led round by the hand. Fell over in garden quite often last year. Difficult getting out of front door. Hesitant due to balance and eyesight problems. Mever looks at things when I point them out; cant seem to focus. Bending over more. Can get out for a walk altho I dont know how much pain she puts up with. Always denies any. Cant feed much apart ftom 1/4 sandwiches and biscuits. Wears inco pads night and day. Washed, dressed etc.
Managing the stairs - just, so far. Asked District Nurses to come and advise about her bottom being sore not long ago. Felt a bit undermined as they told the GP they were appalled at what they saw. Foolishly I asked Chris to hurry to a couch to lie down in another room, thinking they were busy people. She can complain, Stupid Man, No I wont etc and also can growl, plus loooks a bit unsteady. They asked if I wanted her in respite. No, Im fine. Same from the GP. They commented it can be difficult to have to live 24/7 together and you can rub each other up. I think they felt Respite would be the first step to N/ Home in view of how Chris seemed to them. Anyway I feel sure I dont want that. Hopefully wont need it... Feel unsure I want to ask for their help again... CPN and SW came once and are available if we request. OT supplied stair rail.
Next thing may be having bed downstairs. The other thing we need to have is some way of getting into the bath. Gave up doing that 8 weeks ago when it was v diff to get her out. Then there would be a further shopping list for equipment like hoist, wheelchair etc. My two concerns; will professionals make us send her somewhere else; And hope I remain fit and OK to keep going - not a problem so far. Chris asked d-in-law Help me die at Xmas last year. Keeps saying Why did it come. Always says Thank you darling last thing at night. Likes singing along, usually smiles. Still got quite a bit to enjoy together. Feel bereft of someone to talk things over to. Kids (3) are great but each is 1 hr plus away from here.
Cheers, as they say
Roland
Chris has other problems as well as AD. She has taken Thyroxine for 18yrs after thyroid cancer operation. High doses of this ?caused osteoporosis. AD started in 1999 with "eyes slipping" - ie unable to read across the page. The Neurologist who saw her in 2001 annoyed her when he asked for name of Osama bin laden 2 weeks after 9/11 and she couldnt answer. She never liked him after that, a "nasty man". He said her symptoms were atypical. Mainly clumsiness at first, couldnt use phone pad, TV remote, problems dressing; At that time could chat OKish. Eventually she had a brain biopsy in 2005 just in case she had some inflammatory brain disease which treatment could help, but result was AD anyway.
After the biopsy she had fits. In the first one her back arched and made a "crack". I got her on the kitchen floor and later she went back in hospital. No one realised how much pain she had. She screamed especially when she was pulled up to get out of a wet bed (other patients told me) Xrays showed 3 spine fractures. May have been there a while before but cracked more in the fit. The fits settled after some months although at times she looks faint as if another might come. But the back pain continues and its difficult to get the medication balanced. Nurses suggested patch type painkiller but they make her more irritable. Sticking to Paracetamol for now.
Seems to have lost all sense of direction now, walks into blind corners, mostly led round by the hand. Fell over in garden quite often last year. Difficult getting out of front door. Hesitant due to balance and eyesight problems. Mever looks at things when I point them out; cant seem to focus. Bending over more. Can get out for a walk altho I dont know how much pain she puts up with. Always denies any. Cant feed much apart ftom 1/4 sandwiches and biscuits. Wears inco pads night and day. Washed, dressed etc.
Managing the stairs - just, so far. Asked District Nurses to come and advise about her bottom being sore not long ago. Felt a bit undermined as they told the GP they were appalled at what they saw. Foolishly I asked Chris to hurry to a couch to lie down in another room, thinking they were busy people. She can complain, Stupid Man, No I wont etc and also can growl, plus loooks a bit unsteady. They asked if I wanted her in respite. No, Im fine. Same from the GP. They commented it can be difficult to have to live 24/7 together and you can rub each other up. I think they felt Respite would be the first step to N/ Home in view of how Chris seemed to them. Anyway I feel sure I dont want that. Hopefully wont need it... Feel unsure I want to ask for their help again... CPN and SW came once and are available if we request. OT supplied stair rail.
Next thing may be having bed downstairs. The other thing we need to have is some way of getting into the bath. Gave up doing that 8 weeks ago when it was v diff to get her out. Then there would be a further shopping list for equipment like hoist, wheelchair etc. My two concerns; will professionals make us send her somewhere else; And hope I remain fit and OK to keep going - not a problem so far. Chris asked d-in-law Help me die at Xmas last year. Keeps saying Why did it come. Always says Thank you darling last thing at night. Likes singing along, usually smiles. Still got quite a bit to enjoy together. Feel bereft of someone to talk things over to. Kids (3) are great but each is 1 hr plus away from here.
Cheers, as they say
Roland