Two years to get this bad. What now?

[Roseleigh]

Hi. I was so looking forward to my lunch today. I'd bought a loaf from the local baker and some lovely ham from the best deli' in town. Only to come home and find the fridge utterly butterless , great, a casualty of that shopping trip. I was less than impressed to say the least. Once again, supermarket here i come. Eventually I did enjoy my late lunch. If only my wife enjoyed her food, life would be a lot easier. She threatened to go off cheese yesterday but thankfully she's back on it today. I noted Philbo's line about finding freshly ironed laundry waiting to be washed, I totally get that. It happens often to me too. I've reduced the stress of that by not actually doing any ironing. It doesn't feel quite so bad now when I find clean washing back in the machine. I've also stopped worrying about Monday morning now, I'll cross that bridge when I come to it. Al.

I wonder if we women make for a more trying PWD than most men, on the basis that most of us have taken prime responsibility for domestic tasks, andd tend to try to continue to do so?

My OH never did a great deal of domestic chores when well, but that has somewwhat ironically now become a positive!

 

[AL60]

Hi. It seems every few weeks brings a new challenge. No sooner do I think one problem is fixed then along comes something else. The visit from the care plan nurses started last Monday, you were right, I was worrying needlessly, my wife gets on with them just fine. In fact, she's really looking forward to tomorrow morning when she can enjoy a hairwash and shower. So. What is that latest development i here you Ask? Well, for some time I've noticed she's not too steady on her feet. It's been a gradually evolving thing over the last few months, it's sort of crept up on us. She had a fall in the house very recently and gave herself two lovely black eyes. Last Monday evening she had a particularly nasty fall downstairs, luckily she didn't do herself any damage. Not a single bruise or scratch. Now several days later she's wary of going upstairs unaided. However that didn't stop her going downstairs in the early hours, nor did it stop her coming back upstairs at two am, to ask if I was getting up at all today. Hope she doesn't make a habit of that. We had a visit from the lady from the falls prevention team on Tuesday so things are moving in the right direction. Well, that's me for tonight, hopefully I can sleep a little bit better than last night, I'll let you know how that goes. Al.

 

[dancer12]

Hi. It seems every few weeks brings a new challenge. No sooner do I think one problem is fixed then along comes something else. The visit from the care plan nurses started last Monday, you were right, I was worrying needlessly, my wife gets on with them just fine. In fact, she's really looking forward to tomorrow morning when she can enjoy a hairwash and shower. So. What is that latest development i here you Ask? Well, for some time I've noticed she's not too steady on her feet. It's been a gradually evolving thing over the last few months, it's sort of crept up on us. She had a fall in the house very recently and gave herself two lovely black eyes. Last Monday evening she had a particularly nasty fall downstairs, luckily she didn't do herself any damage. Not a single bruise or scratch. Now several days later she's wary of going upstairs unaided. However that didn't stop her going downstairs in the early hours, nor did it stop her coming back upstairs at two am, to ask if I was getting up at all today. Hope she doesn't make a habit of that. We had a visit from the lady from the falls prevention team on Tuesday so things are moving in the right direction. Well, that's me for tonight, hopefully I can sleep a little bit better than last night, I'll let you know how that goes. Al.

Hi:

Glad to hear things are better. If she gets on fine with the nurses that's a good thing, they can make her do things that she would never do for you. Maybe she'll even eat. She might put on so much weight you might need to get stronger chairs. Everything comes around eventually, sometimes it just takes longer than others.

 

[AL60]

Once again, Hi. Yes, these carers are the best thing ever, so says my wife. All those worries I had about people, strangers, coming in to the house carrying out tasks that to my wife even six months ago, would have been unthinkable, are now taking place with no fuss or bother. We've come a long way since this first started just over three years ago. One step at a time, face each problem as it happens and try not to worry about something that hasn't happened yet. If there's one thing I've learned it's not to try and second guess what happens next. Dementia doesn't seem to play by any rules, there's no text book stuff that can prepare you, it's just enjoy what you've got and take every good day as a bonus day. Today wasn't one of the better days but maybe tomorrow will be a bit better ☺. Al.

 

[margherita]

Today wasn't one of the better days but maybe tomorrow will be a bit better ☺. Al.

Hi @AL60
Let's hope for the better and be ready for the worse
I am glad your wife gets on well with her carers. It means a bit more freedom for you, doesn't it ?
I appreciated your post. Wise words I should keep in my mind .
Thanks, Al

 

[PalSal]

Hi @AL60
Let's hope for the better and be ready for the worse
I am glad your wife gets on well with her carers. It means a bit more freedom for you, doesn't it ?
I appreciated your post. Wise words I should keep in my mind .
Thanks, Al

So, right Al not rules with this disease. We just do not know from day to day....but the prognosis is the same , the journey is different for everyone.

 

[AL60]

Hi again. Can't believe it's been 10 days since I was here last. It's certainly not because I've been off enjoying myself, far from it. We've been getting used to a different routine which involves a carer calling in twice a day, my wife now looks forward to their calling. So do I, at least my wife now enjoys, if that's the right word for it, a shower or bath at least every couple of days. At least she did until last Monday. One of the more experienced carers suggested it may be better and safer if my wife were to sit in the bath rather than stand thereby reducing the risk of falling. I've mentioned in a recent post about her falls and unsteadyness while out walking. So, for several days this went very well, until Monday. Shower off and water draining my wife found it quite impossible to stand and get out of the bath. This was a first for me. After several attempts to get her out it became obvious that we needed help. The last time I had to help her up she was a total deadweight unable to help at all, legs all over the place like bambi on ice. No way were either myself or our first time visiting carer going to lift her out. After a call to the 111 service an ambulance was dispatched and two and a half hours later she was out and dressed.
Two weeks ago we had a visit from the lady from the falls prevention team, after her assessment she informed us that we would receive an appointment letter from the occupational therapist. Yesterday my daughter contacted the falls team to ask whether we would hear from the O.T. any time before Christmas. No, the earliest they could say was January. Well, today my daughter had a call asking if Dec 20 would be ok! Now, I'm not expecting any miracles from this visit, just some sensible suggestions and a little practical help. Early next year I'm going to convert the bathroom to a more user friendly walk in shower room. This will be fine as long as my wife can still access the upstairs. I've mentioned in earlier posts about the speed of progression of this dementia, I'm having trouble trying to keep up, every new development seems to take me by surprise. The heading on this thread reads, two years to get this bad, what now? If only I knew, perhaps it's as well I don't know, I might be tempted to run awayAl.

 

[Tin]

Not so sure that carers advice was that good. To fill the gap, have you thought about getting a bath seat? When things became difficult for my mum I bought a Medeci bath seat - sits in the bath with four legs that have rubber suction pads and with a non slip pad for her feet, then I was able to shower mum quickly and when finished with my help she was able to stand and get out of the bath. worked well for a while.

 

[Casbow]

Hello Al60. When my husband was at home he became to scared to step into the bath to use the shower. It was a good shower and had non skip mat,all that was needed. But suddenly he didn't want to get in and it was even more difficult to get him out. So I had a walk in shower put in .Grab handles, seat, non slip , but after about 2 weeks he refused to get in it. Nothing would persuade him. He would get very angry. I have since found out that people with dementia can be terrified of the white toilet, bath, shower. You can now buy coloured toilet seats. My husband refused to sit on the toilet as well which might have been the white seat. Just a thought before you start paying out. I spent so much money trying to get things right, including all the incontinence protection for him and the bed. And for cleaning him. So since Sept.2016 until may 2017 he never had a shower or bath. I washed him top to bottom everyday. He has now been in a nursing home for 7 months. He now has a bath everyday. But it takes two people and a special sit in bath. Also once I got rid of the bath there was no further option!! You can get baths with a door that you can get into. I wish you luck. See what occupational therapy have to say. Good luck. xx

 

[AL60]

Hi.I know it's been a couple of weeks since I was here last. The fact is, I'm running out of things to say. Things are certainly not getting any easier for me, god knows what it must be like for my wife, i guess I'll never really know. We were out at the shops yesterday, she was holding on to my arm so as to keep from falling, the crowds, the noise, the alien environment whilst in a familiar place, briefly i could see it from her perspective. Then it was gone. For a brief moment i felt I knew how she felt, It was enough to say, we got what we went for, then left for home. The carers come in the morning and evening but the showering can be a bit hit and miss. Today was a hit, hairwash too but later this afternoon she got upset about her hair being wet, it wasn't but it didn't stop her from taking it out on the hairdryer. At least it was only the hairdryer, in the bin is the usual cry. Her doctor has just prescribed her sertraline, that too is destined for the bin if she has her way! The cavalry are coming, the promised respite is being talked of again, we'll see, for now I'd just be glad of an afternoon to myself a month, things at present are just too full on. I still intend to go ahead with the new wet room walk in shower. I have taken heed of the warnings in the previous replies. But it's impossible to try and second guess every eventuality that may occur so i can only do my best and then see what happens, i know for a fact that whatever I do it will be wrong☺ that the story of my life. So, happy new year from me and goodnight. Al☺

 

[Casbow]

Hi.I know it's been a couple of weeks since I was here last. The fact is, I'm running out of things to say. Things are certainly not getting any easier for me, god knows what it must be like for my wife, i guess I'll never really know. We were out at the shops yesterday, she was holding on to my arm so as to keep from falling, the crowds, the noise, the alien environment whilst in a familiar place, briefly i could see it from her perspective. Then it was gone. For a brief moment i felt I knew how she felt, It was enough to say, we got what we went for, then left for home. The carers come in the morning and evening but the showering can be a bit hit and miss. Today was a hit, hairwash too but later this afternoon she got upset about her hair being wet, it wasn't but it didn't stop her from taking it out on the hairdryer. At least it was only the hairdryer, in the bin is the usual cry. Her doctor has just prescribed her sertraline, that too is destined for the bin if she has her way! The cavalry are coming, the promised respite is being talked of again, we'll see, for now I'd just be glad of an afternoon to myself a month, things at present are just too full on. I still intend to go ahead with the new wet room walk in shower. I have taken heed of the warnings in the previous replies. But it's impossible to try and second guess every eventuality that may occur so i can only do my best and then see what happens, i know for a fact that whatever I do it will be wrong☺ that the story of my life. So, happy new year from me and goodnight. Al☺

So good to hear from you. It seems a long time. Worried you had even more difficult stuff going on. Hope your Christmas was fairly ok. Mine was passable. At least i got to have dinner with him in the nursing home . Please keep posting. Even if it is just to say"I'm doing ok." xxx

 

[Amethyst59]

Al, you sound so down...in just the few months I have been using the forum I have sensed you becoming more...well, maybe depressed isn’t the right word...but things have seemed to be on a downward spiral. Is t there any chance of your wife going to a day centre once or twice a week? It would mean time off for you...but I have also seen a change in my husband since he started Cogs. He is more confident in a group now. It’s great you have carers coming in...could that be extended? I think you have a daughter living with you still? Maybe she could give you a few hours a week...even if it were every other week it would be something.

 

[Philbo]

Hi Al

Good to see your update, even if things are not getting any easier. It's frustrating for you that you are not getting the respite that you need (and deserve!). Keep chasing the LA to get their finger out and get something sorted.

I now manage to get Monday afternoons (free respite visitor for 3 hours via a local charitable organisation), Tuesday mornings (I pay for my wife to attend a local "activity morning" run at a local community centre) and all day Wednesday (LA/NHS run day centre - costs £34 a day).

I do understand that given your circumstances, it may be very difficult for you to get your wife to agree to similar solutions but all the more reason for the social workers to try to find something that can be tried?

Even with all this support, it can still seem a desperately lonely existence trying to care for a PWD and it's good to exchange experiences with this lovely forum.

All the best for the New Year to you AL and all the users of this forum.
Phil

 

[AL60]

Hi. Last nights post was to be the last for 2017. But as I've no plans to go anywhere, here I am. Today has been a, not bad day. A positive way to end this year. Just the two of us today, no carers, no family members, just us and three Disney films back to back which she , oh deared too all the way through. Ive found this many times, when it's just us two, she's very quiet, amiable even. Add in a family member, or carer and it's aa different story. It's odd , she'll be fine with them but as soon as they go its me that gets the fallout. Don't worry , i get why, its the ones closest that have to wear the hardhats. Doesn't make it any easier though. It's for the same reason our daughters, if they suggest going anywhere, then we can't possibly be split up, we go as a pair, like a pair of old,, well, fairly old socks, I could do with a couple of days lost behind a cupboard or somewhere, hopefully not behind the radiator though, cant stand the heat. So as this year comes to an end i can't help but wonder what 2018 will bring. It doesn't do to worry about something that's not happened yet, live for now. This new year could well start with a chance of some long awaited respite, if it does I'll take it and blow the consequences, it's time to put my own sanity first. So, once again, Happy new year to all from me, Al☺.

 

[Amethyst59]

to put my own sanity first. So, once again, Happy new year to all from me, Al☺.

Yay! This is a good New Year’s resolution!

 

[nita]

I'm sorry to hear you've been having a hard time, @AL60. Do you have a Social worker who has devised your wife's care plan or do you self-fund? If the former, I was allowed 3 hours a week "social time" for my mother. As she wasn't mobile, the carer sat with her for that time and I was able to go out or do other things. If finances allow, you could pay for this privately or, as @Philbo suggests, maybe a local organisation like Age UK can offer some help.

I hope you can get a whole week or two's respite in the new year.

Your wife sounds to be losing her mobility. Perhaps the OT will suggest a walking frame for her? I would hesitate about having a shower room upstairs - is there anywhere downstairs you could have it? Our bathroom was upstairs and we had to have a stairlift but my mother only used it for about 6 months before she had to sleep downstairs. I am afraid you can't tell how rapidly things will change, as you already know.

 

[AL60]

I'm sorry to hear you've been having a hard time, @AL60. Do you have a Social worker who has devised your wife's care plan or do you self-fund? If the former, I was allowed 3 hours a week "social time" for my mother. As she wasn't mobile, the carer sat with her for that time and I was able to go out or do other things. If finances allow, you could pay for this privately or, as @Philbo suggests, maybe a local organisation like Age UK can offer some help.

I hope you can get a whole week or two's respite in the new year.

Your wife sounds to be losing her mobility. Perhaps the OT will suggest a walking frame for her? I would hesitate about having a shower room upstairs - is there anywhere downstairs you could have it? Our bathroom was upstairs and we had to have a stairlift but my mother only used it for about 6 months before she had to sleep downstairs. I am afraid you can't tell how rapidly things will change, as you already know.

Hi. Wise words about the upstairs shower, that thought has crossed my mind. A bedroom downstairs shouldn't be too hard to set up but a shower room may prove to be a bit harder to sort. But all things are possible so first things first, one step at a time. We are self funding at present but it won't stretch forever, and we do have a social worker on the case so I'll wait and se what next year brings, which technically is any minute now

 

[Battered]

I can relate to all the above posts. I began to think it was me when my wife tells me she never liked so and so and I think "But I know you did." I am on a very steep learning curve and it is extremely stressful. I haven't been out of the house on my own except for my own GP or hospital appointments for about 2 years. To b honest I am frightened of what the next day might bring. Happy New Year? Pah! Bunkum!

 

[PalSal]

Yay! This is a good New Year’s resolution!

I am with you and Am on this. My own sanity first is essential....if I do not take care of myself first I have nothing to give others. So this is a great new years resolution for all us carers. Good post many thanks for the reminder...

 

[AL60]

Hi. Still here, i keep telling myself how much worse things are getting but i have this sneaking suspicion that i "ain't seen nothin yet. I could go on about how things are but as it's late and I've left my glasses downstairs ill keep it short. What i will say though, the blue badge assessment went reasonably well, we have been loaned a wheelchair and later today we'll be getting that stair rail fitted, its a start. Oh yes, nearly forgot, someone calling later today to arrange a sitter. Don't hold your breath on that one got to try for my own sake. Had enough of trying to type blind so time for one long blink then a new day dawns, then it all starts again. So, goodnight Al.