Two years to get this bad. What now?

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
So pleased you had a better visit and your wife seems more content @AL60 :)
Hope you get some sleep and have another more positive visit tomorrow.
Goodnight to you too
Lindy xx
 

Rolypoly

Registered User
Jan 15, 2018
2,319
0
Glad you had a better day yesterday and feel a bit more hopeful.

Maybe OH was making sure you got fed as well!
 

Cazzita

Registered User
May 12, 2018
617
0
Oh that is much more positive but a shame about the dinner! Wonder why that wasn't noticed by anyone? Fingers crossed for positive future visits x
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi, I know it's late but I'm not tired so I'll spend half an hour or so posting. My last couple of visits have gone reasonably well. After last weekend's quarantine, more like solitary confinement, she's now lost the ability to walk at all. Three months ago she could walk, a bit wobbly and unsteady but she could manage to get about. But now she can't even get to a standing position without help. I honestly don't know what could possibly be next. I'm not going to try to second guess what's next, all I can do is take it one week at a time.
Still no news on a move to a care home. I'm sure one dày we'll find out what's happening. In the meantime I'll just keep making the trip to visit her. I think now I'm more tired than I realise so I'll sign off now, so, goodnight, Alo_O.
 

Cazzita

Registered User
May 12, 2018
617
0
Hi, I know it's late but I'm not tired so I'll spend half an hour or so posting. My last couple of visits have gone reasonably well. After last weekend's quarantine, more like solitary confinement, she's now lost the ability to walk at all. Three months ago she could walk, a bit wobbly and unsteady but she could manage to get about. But now she can't even get to a standing position without help. I honestly don't know what could possibly be next. I'm not going to try to second guess what's next, all I can do is take it one week at a time.
Still no news on a move to a care home. I'm sure one dày we'll find out what's happening. In the meantime I'll just keep making the trip to visit her. I think now I'm more tired than I realise so I'll sign off now, so, goodnight, Alo_O.

Aw, sorry to hear this. It's so weird that their walking is affected, not looking forward to that stage. Yes, take one day at a time but take time out for yourself too, do something that YOU enjoy. xx
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Aw, sorry to hear this. It's so weird that their walking is affected, not looking forward to that stage. Yes, take one day at a time but take time out for yourself too, do something that YOU enjoy. xx
Hi. I don't think mobility, balance and walking difficulty affect every dementia sufferer. While in the hospital assessment unit there are a few with walking difficulty but equally a good number who can get around with no problems. I visited again today, still just the same, oh well, keep going eh'. Taking some time out for myself tonight, meeting an old mate for a couple of drinks then home. And yes, I will try to enjoy:)Al.
 

Cazzita

Registered User
May 12, 2018
617
0
T
Hi. I don't think mobility, balance and walking difficulty affect every dementia sufferer. While in the hospital assessment unit there are a few with walking difficulty but equally a good number who can get around with no problems. I visited again today, still just the same, oh well, keep going eh'. Taking some time out for myself tonight, meeting an old mate for a couple of drinks then home. And yes, I will try to enjoy:)Al.

That's good to hear @AL60 - hope you enjoyed the drinks and chat.
Yes, it is a strange thing that some are affected and some aren't. It all seems so random. Mum is shuffling around but if she lost weight her knees would be better and maybe that would help, who knows?
Take care :)
 

Cazzita

Registered User
May 12, 2018
617
0
Hi. I don't think mobility, balance and walking difficulty affect every dementia sufferer. While in the hospital assessment unit there are a few with walking difficulty but equally a good number who can get around with no problems. I visited again today, still just the same, oh well, keep going eh'. Taking some time out for myself tonight, meeting an old mate for a couple of drinks then home. And yes, I will try to enjoy:)Al.

Also, I wonder what the percentage is whose walking is affected...
 

imsoblue

Registered User
Feb 19, 2018
355
0
Also, I wonder what the percentage is whose walking is affected...
My OH has Parkinson's Plus which affects his walking, specifically Primary Progressive Freezing of Gait so his walking was reduced first. Then the dementia diagnosis. He was then delegated to a wheel chair rather quickly, I felt. Parkinson's Plus and dementia are both because of his brain not functioning correctly. I assume it all depends on what part of the brain is affected. In m
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi again. Another day, another visit. Not a good experience this time. Less than thirty minutes in and out of the blue her mood changed. The best thing to do is also probably the hardest thing to do is, make an excuse to leave. Due to heavy Friday traffic the journey took twice as long, so I thought, nothing spoiling, I'll have a nice long visit and leave later to try and miss the teatime rush. No chance, instead another busy journey home. Not to worry, I've nowhere else to go. I was also informed that someone from the care home was coming out to assess her. Not heard anything. Also trying to contact my social worker, nothing doing there either, she's off now until Tuesday. While on the subject of not enough information the dwp have stopped making payments to motability, they stopped last month but haven't informed me. So, tomorrow going car shopping. As if there wasn't enough to do. At least now they seem to be taking more interest in what my wife is eating, she's having a nurse sit with her at mealtimes and also being visited by the dietician. I still don't know what her weight is , I can only guess that it's a lot lower than two months ago. I'll stop now, I've downloaded enough for one evening:mad:. So tonight it's feet up and relax, just me, two boisterous kittens and sole control over the remote:). What can possibly go wrong tonight:oops:shouldn't have said that;)Al.
 

Cazzita

Registered User
May 12, 2018
617
0
Hi again. Another day, another visit. Not a good experience this time. Less than thirty minutes in and out of the blue her mood changed. The best thing to do is also probably the hardest thing to do is, make an excuse to leave. Due to heavy Friday traffic the journey took twice as long, so I thought, nothing spoiling, I'll have a nice long visit and leave later to try and miss the teatime rush. No chance, instead another busy journey home. Not to worry, I've nowhere else to go. I was also informed that someone from the care home was coming out to assess her. Not heard anything. Also trying to contact my social worker, nothing doing there either, she's off now until Tuesday. While on the subject of not enough information the dwp have stopped making payments to motability, they stopped last month but haven't informed me. So, tomorrow going car shopping. As if there wasn't enough to do. At least now they seem to be taking more interest in what my wife is eating, she's having a nurse sit with her at mealtimes and also being visited by the dietician. I still don't know what her weight is , I can only guess that it's a lot lower than two months ago. I'll stop now, I've downloaded enough for one evening:mad:. So tonight it's feet up and relax, just me, two boisterous kittens and sole control over the remote:). What can possibly go wrong tonight:oops:shouldn't have said that;)Al.

Whatever else is going on, just relax and enjoy your Friday night xx
 

KV63

Registered User
Aug 28, 2018
11
0
Hi. Just over two years ago I noticed subtle changes in my wife's behavior. Only little things, things you only notice if you've known someone a long time. Over the last two years the changes became less subtle and more and more obvious. Then came the first Dr's appointment, the first memory test and the first , "Don't worry, it's probably just stress and anxiety". Yet all the time I knew it was more than that. Then things got so bad for her she had to go off sick , long term. Then another Dr appointment, another memory test followed by a referral to a memory clinic. More tests, "We think it's extreme anxiety" I think at that stage I was the anxious one. As well as being off work she'd also given up driving. One more memory test, that was it. "We think now it may be a memory problem after all". Well, three scans later we now have the result. After all this time convinced it could only be dementia, my only thought was which one. Of course I never gave up hope it may be something that could be fixed, yesterday came the diagnosis. Vascular dementia? They can never be 100%. So,what now. It's strange , for a long time I've guessed the worst but now I know, it's still come as something of a shock to the system. At home nothing has changed, it's business as usual, although I have noticed a change in her behaviour once again, not for the better either. She doesn't seem that bothered, if anything she's relieved it's not alzheimers. My next task is to persuade her to accept the medication, don't worry, she's OK with it now. I've taken early retirement, technically it's my last day tomorrow although I've been off since July. So I've slowly been morphing into the role of carer, I must admit at times I've been finding the transition difficult. But between us and the rest of the family I'm sure we'll be OK. I also know that there will be assistance on offer now from the team at the clinic, so we're never truly on our own. And of course this forum, a great place to download when the road gets bumpy. I'll go now but I'll post again when I feel the need. Al.
Hi Al
I am on a similar journey, noticing the subtle changes over a period of about 3 years and a look on his face that I had not seem before. He was diagnosed with Alzheimer's the end of last year. His is on strong medication now which I think is slowing the symptoms down, though is in denial about the situation. I still work 2 mornings but not sure how much longer that will continue. As you say changing role to carer can be hard. Val
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi Al
I am on a similar journey, noticing the subtle changes over a period of about 3 years and a look on his face that I had not seem before. He was diagnosed with Alzheimer's the end of last year. His is on strong medication now which I think is slowing the symptoms down, though is in denial about the situation. I still work 2 mornings but not sure how much longer that will continue. As you say changing role to carer can be hard. Val
Hi. It's not easy is it. My wife has been in the hospital for two months now so technically I'm not a carer but that's not to say I don't care. It just makes me more of a worrier. Every day feels so empty. Lots to do but just can't seem to be bothered, I've lost interest in everything. I realise that before, everything we did, everywhere we went, we went together. I keep telling myself to get a grip, I guess I'm not listening to myself. Well, tonight I'm out with a couple of old friends, we meet up a couple of times a week, I used to enjoy it but now it seems a bit of a chore,, especially now that the days are getting shorter and the evenings cooler. But i Will go out for the evening, and I will try to enjoy it:)I promise:)Al.
 

Casbow

Registered User
Sep 3, 2013
1,054
0
77
Colchester
Hi. It's not easy is it. My wife has been in the hospital for two months now so technically I'm not a carer but that's not to say I don't care. It just makes me more of a worrier. Every day feels so empty. Lots to do but just can't seem to be bothered, I've lost interest in everything. I realise that before, everything we did, everywhere we went, we went together. I keep telling myself to get a grip, I guess I'm not listening to myself. Well, tonight I'm out with a couple of old friends, we meet up a couple of times a week, I used to enjoy it but now it seems a bit of a chore,, especially now that the days are getting shorter and the evenings cooler. But i Will go out for the evening, and I will try to enjoy it:)I promise:)Al.
 

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