I can't believe it is nearly TEN YEARS since I poste the thread below abt my DH and his attitude to life (and me) back then, and life has plodded on in much the same vein but with new problems to cope with.
www.gransnet.com/forums/relationships/1237678-I-despair?pg=6 m (hope that works. maybe if you copy and paste it).
There have been ups and downs as you might expect. He is now nearly 80 and I am nearly 75. I've had cancer and survived, (though with permanent side-effects), we've acquired a new son-in-law and a new baby grandson to join the other two who are now teens.
DH went to the GP with a problem knee (8-ish years ago). After x-rays etc he was referred for physio (again). A visiting neurologist expressed an interest in his problems and referred him to a colleage at a hospital 30 miles away, which he has been attending ever since. Miraculously the knee has not troubled him at all since.
He was diagnosed with Peripheral Neuropathy. He was told he also had minor "infarctions" in the brain which are basically evidence of TIAs though we had never noticed anything that might have indicated a TIA (I have had two and very definitely knew summat was up). His drug regime was changed but all is at very low doses. He has regular blood tests and all are in the normal range (though sometimes pre-diabetic).
He has no treatment for the PN, but it answered the questions around the shuffling feet etc that we had already noticed. More physio was organised. After a number of sessions the therapist suggest tests for Parkinsons.
These were done, but the tests were inconclusive. However the consultant thought it worth trying a particular Parkinson's drug but after three months there was no improvement. Tomorrow he finishes another round of experimental Parkinson's drugs at double the previous dose and again, no improvement (and no side-effects either). The consultant is arranging a joint consultation with his radiologist to discuss the latest brain scans as compared with those of 7 years ago.
In the past 8 months his mobility has taken a massive dive. He started using a rollator outdoors and soon became welded to it. In fact he hasn't been outdoors for 5 months (unless with medical assistance) cos he can't get over the doorstep. He was given more exercise advice from the physio but didn't do any. While away on a long holiday (yes, I still encourage holidays and we have had two World Cruises) he deteriorated even more rapidly due partly I guess to the unfamiliar surroundings and the ship movement, and again did no exercises at all. He decided he didn't like water so stopped drinking it and has had two severe episodes of dehydration necessitating emergency admission to hospital and a drip. He still won't drink enough water even with added fruit juice.
He now cannot walk at all without a rollator, including indoors, and his speed is abt 140 metres (yards) an hour, sometimes a lot less. He only manages 4 lots of 30 minutes a day. He has a loaned hospital bed in our lounge after a fall on the stairs made him frightened of stairs (abt 4 months ago). Also a commode and nappies as he can't get the rollator into the cloakroom. He only has stand-up washes given by me.
Apart from frequent hospital visits (30 miles away via Community Ambulance) he has only left the house once in 4 months with the help of our two strong sons-in-law.
There is no way I would be able to get him over the threshold myself in a wheelchair, even though we have ramps.
The care workers were organised for us. We had no idea what services were available and were given little choice - these are the two to choose from, let us know by tomorrow! They are okay, some very keen, some not so keen, and I know they are paid peanuts despite the charge of £40 per carer per hour. They insisted in coming in pairs, so that is £40 per half-h.ur visit, 4 times daily, over £1,100 a week. Or c £55,000 a year. I watched them carefully for a few weeks and decided I could do what they did at least as well myself, so we are now down to twice a day visits and plan to reduce it again.
Meanwhile his (and my) general view of life has inevitably become more limited though today's visit from the physio lady might result in some ideas as to how to get him out of the house and into the car, which will be a revelation to us.
There has been no sign of any change to the possible dementia that posters suggested ten years ago - still poor memory, lack of conversation and a few more arguments about the fact that he ignores me most of the time. I have struggled to maintain my outside interests (but have managed) but have become aware that I actually have lots of acquaintances and "colleagues" on the committees I serve on but no friends amongst them. My two closest friends have died since I last posted.
It's a grim life. I am due a nasty operation on my mouth sometime soon and not sure how I will get to the hospital or back (20 miles each way) and what care I will need afterwards. I have no-one who would come with me or help me in my recovery. The op itself isn't major but recovery could be tedious and need special food.
We need to move from this 5-bed detached that we can't (and haven't) properly maintained - due mainly to DHs lack of interest in such things and I have been trying to get rid of brambles, nettles, ivy and the dreaded horsetail myself. I tried to find a "man" to do it, but no go. Plus he doesn't want to move, has always insisted he would never move, so it might never happen.
In the past 4 months I have managed just three showers/hairwashes (he has had more than me) and had £1500-worth of dental treatment (remedial, not cosmetic) to save my mouth from decomposing.
Should I have left 10 years ago? I still don't know. I tell myself that none of us knows what is around the corner and we have to face it, but it is damned hard when (in my view) a lot of our problems have been self-inflicted by my husband who would not take medical advice or any advice at all from me.
So I'm still bitter but soldiering on.
I really don't expect anyone to come up with any magic solutions or even advice. I didn't expect to end up as a carer for someone I hoped would at least look after himself so as to give us the best chance of weathering these inevitable storms.
