Help needed please

[Pipeth]

This sounds a familiar story! Dementia, for late OH, arthritis for me!
Have you thought of building on to your bungalow? When we moved here we did a lot of alterations to help me and one of them was adding a conservatory. On family occasions and parties, OH would ‘hold court’ out there and receive a couple of people at a time. Then people would come into me and say, he’s really well, chatting away!! Another advantage was that I would say, here’s W and L to see you, which got over the problem of him not knowing to whom he was conversing.
Yorkie, after my hip and knee replacements I was fine, working, which included a lot of walking, gardening, and other things. It was only three or so years later that things got awkward. Arthritis in the feet is not to be laughed at! I had carpal tunnel as well, but after being told both wrists would need doing, I didn’t have much trouble, so they weren’t done. Then one day last year I spent the whole day doing paperwork and my wrists really ached. Worked out that I had stopped doing a lot of paperwork around the time my wrists had cleared up!
Now it’s my cervical spine that’s the main problem, which impinges on the shoulder joints.
I was hoping that I would be able to get back to my hobbies after caring finished, but OA just got worse! I can still drive - just - but walking is not on!
Good luck, both of you!

Thank you Spamar for the tips, we do have a conservatory and my husband does enjoy sitting in there, he just doesn't like visitors and will often disappear in the garden. It used to annoy me but I now understand that he was hiding his anxiety about losing words when in conversation. I am learning a lot on here and have found techniques that are working for us. Sorry to hear of your health issues, it is not fun ageing is it! Good to hear that hip and knee replacements improve things for while. Take care

 

[Spamar]

Hi pipeth, hip and knee were 12 years ago which, considering my weight, is miraculous! It’s the rest of me that giving up, though hopefully not my brain!

 

[Pipeth]

Hi pipeth, hip and knee were 12 years ago which, considering my weight, is miraculous! It’s the rest of me that giving up, though hopefully not my brain!

Yes I agree seeing what my husband is going through arthritis seems the best deal for old age. Feeling down today and have had a cry. This week has made me realise what our future has become, so pleased I can come on here and talk to all the amazing people on here, I am sure I have made the right decision not to move, but it feels that life will never be as good as it could have been. Also reflecting on how long this has been going on thought he was just being grumpy and difficult in the past... feeling really sorry for myself and pathetic, it feel like it is just hitting me the damage this has done is doing.

 

[Spamar]

((((Hugs))))
You are NOT pathetic, so put that idea right out of your mind!
I doubt if there’s a person on here who hasn’t had their retirement plans changed, at the very least. I Didnt expect to spend years looking after OH either. And I certainly didn’t expect not to be able to do many things that are /were important to me after the caring had finished! So I’ve now got to find something I can do that will satisfy me. To be fair, I haven’t found it yet!
However, you now have to recover, or at least mitigate the effects. Only you can sort out the best way, especially when you are still caring. I get a lot of peace of mind by seeing friends - the group I am thinking of are all still in the caring mode, though two OHs are in care homes. I also have a friend who always comes up with good suggestions and she always makes me see straight!
Keep smiling!

 

[Pipeth]

((((Hugs))))
You are NOT pathetic, so put that idea right out of your mind!
I doubt if there’s a person on here who hasn’t had their retirement plans changed, at the very least. I Didnt expect to spend years looking after OH either. And I certainly didn’t expect not to be able to do many things that are /were important to me after the caring had finished! So I’ve now got to find something I can do that will satisfy me. To be fair, I haven’t found it yet!
However, you now have to recover, or at least mitigate the effects. Only you can sort out the best way, especially when you are still caring. I get a lot of peace of mind by seeing friends - the group I am thinking of are all still in the caring mode, though two OHs are in care homes. I also have a friend who always comes up with good suggestions and she always makes me see straight!
Keep smiling!

Thank you Spamar, you saying I have to recover helps, I am feeling shook up and will get a grip again. I do not have any close friends nearby, we moved here three years ago, most of my social life was through work. My children all live at a distant and I do not want to worry them day to day. My husband rings me constantly if I go out anywhere, even to the local shop or hairdressers, he doesn't like being on his own and last time I was gone for a day he blew the electrics after he rewired a plug wrongly, it took me an hour to convince him what was causing the fuses box to trip. We belong to the allotment society but he is refusing to go to any socials, we went on one last year and he kept saying he wanted to leave. Our children have celebrated special birthdays and other events in the past and he has not been able to go, I went to some on my own but now I am not sure that will happen....at christmas he didn't want to go to dinner at our daughters, we haven't seen anyone except neighbours to say hello to since. I suppose I should just go out and hope for the best....I have been waiting for the memory clinic for answers...they are waiting for the MRI since last November. I have interests but can't settle to them because he has none!! I expect this is quite common...when your trying to read when someone sitting opposite is huffing and puffing is quite frustrating!!! Right this is long enough... it does help writing doesn't it. I hope you can find something to do, I know with your hands it is difficult, I am finding handwriting, cross stitch, crocheting and hand sewing painful at the moment and realise they will gradually have to be dropped. Thank heavens for wordprocessing. Take Care.

 

[Spamar]

You’re right, thank heaven for word processors! I sometimes have problems with them, as well!
Yes, I used to do embroidery etc ( not knitting, my mother was a super knitter, never any need for me to learn!).i noticed nearly three years ago when I got my cleaner to help me sew on some clothes labels, she did three to my one! So that’s another thing that’s gone.l
. My eyes seem to pack up by the evening, the optician said it was age! Age! I’m not that old!

One of the first things OH lost was his ability to use a phone, or any electronic equipment. I’m alway slightly in awe of those pwd who are in late stages and still happily using a phone!

Is there no meetings for pwd nearby? I got OH to go to daycare and we went to an AS meeting from diagnosis. As time went on, he just went to more daycare. There was a minibus to take people there, so that saved me a bit. I could then get out, do my stuff, dentist, doctor, coffee with the girls on my days off.
Northamptonshire should have quite a lot going on? Or are you out in the sticks? I lived in Leicester for 10 years, btw, vaguely aware of the area. Recently been to Launde with the June meetup, not too far for you!

He did a lot of things ‘to help me’, even when he didn’t really want to, which was fortunate for me.
His children were fine, well 2/3 were. The third doesn’t particularly like me ( from the first time he set eyes on me). The other two still visit regularly, with families. OH used to enjoy seeing them, maybe because in the last few years they brought chocolate brownies, his absolute favourite at the time!

Waiting for results is a pain, it took over 6 months 11 years ago. Don’t think it has improved! However, OH knew he had a bad memory, but as we were about to move house, we left it. As it happened we only moved about 20 miles, but it could have been Cornwall, Devon, or Somerset, all were considered. It then took 2 years to move! He had known he had a poor memory before the move decision. He didn’t really deteriorate too much in that time, but we were in little doubt what was happening. His sister, and both fathers had dementia as well.

Sorry, I’ve been rabbiting again!
Cheers.
S

 

[Pipeth]

You’re right, thank heaven for word processors! I sometimes have problems with them, as well!
Yes, I used to do embroidery etc ( not knitting, my mother was a super knitter, never any need for me to learn!).i noticed nearly three years ago when I got my cleaner to help me sew on some clothes labels, she did three to my one! So that’s another thing that’s gone.l
. My eyes seem to pack up by the evening, the optician said it was age! Age! I’m not that old!

One of the first things OH lost was his ability to use a phone, or any electronic equipment. I’m alway slightly in awe of those pwd who are in late stages and still happily using a phone!

Is there no meetings for pwd nearby? I got OH to go to daycare and we went to an AS meeting from diagnosis. As time went on, he just went to more daycare. There was a minibus to take people there, so that saved me a bit. I could then get out, do my stuff, dentist, doctor, coffee with the girls on my days off.
Northamptonshire should have quite a lot going on? Or are you out in the sticks? I lived in Leicester for 10 years, btw, vaguely aware of the area. Recently been to Launde with the June meetup, not too far for you!

He did a lot of things ‘to help me’, even when he didn’t really want to, which was fortunate for me.
His children were fine, well 2/3 were. The third doesn’t particularly like me ( from the first time he set eyes on me). The other two still visit regularly, with families. OH used to enjoy seeing them, maybe because in the last few years they brought chocolate brownies, his absolute favourite at the time!

Waiting for results is a pain, it took over 6 months 11 years ago. Don’t think it has improved! However, OH knew he had a bad memory, but as we were about to move house, we left it. As it happened we only moved about 20 miles, but it could have been Cornwall, Devon, or Somerset, all were considered. It then took 2 years to move! He had known he had a poor memory before the move decision. He didn’t really deteriorate too much in that time, but we were in little doubt what was happening. His sister, and both fathers had dementia as well.

Sorry, I’ve been rabbiting again!
Cheers.
S

You’re right, thank heaven for word processors! I sometimes have problems with them, as well!
Yes, I used to do embroidery etc ( not knitting, my mother was a super knitter, never any need for me to learn!).i noticed nearly three years ago when I got my cleaner to help me sew on some clothes labels, she did three to my one! So that’s another thing that’s gone.l
. My eyes seem to pack up by the evening, the optician said it was age! Age! I’m not that old!

One of the first things OH lost was his ability to use a phone, or any electronic equipment. I’m alway slightly in awe of those pwd who are in late stages and still happily using a phone!

Is there no meetings for pwd nearby? I got OH to go to daycare and we went to an AS meeting from diagnosis. As time went on, he just went to more daycare. There was a minibus to take people there, so that saved me a bit. I could then get out, do my stuff, dentist, doctor, coffee with the girls on my days off.
Northamptonshire should have quite a lot going on? Or are you out in the sticks? I lived in Leicester for 10 years, btw, vaguely aware of the area. Recently been to Launde with the June meetup, not too far for you!

He did a lot of things ‘to help me’, even when he didn’t really want to, which was fortunate for me.
His children were fine, well 2/3 were. The third doesn’t particularly like me ( from the first time he set eyes on me). The other two still visit regularly, with families. OH used to enjoy seeing them, maybe because in the last few years they brought chocolate brownies, his absolute favourite at the time!

Waiting for results is a pain, it took over 6 months 11 years ago. Don’t think it has improved! However, OH knew he had a bad memory, but as we were about to move house, we left it. As it happened we only moved about 20 miles, but it could have been Cornwall, Devon, or Somerset, all were considered. It then took 2 years to move! He had known he had a poor memory before the move decision. He didn’t really deteriorate too much in that time, but we were in little doubt what was happening. His sister, and both fathers had dementia as well.

Sorry, I’ve been rabbiting again!
Cheers.
S

Please don't apologise for rabbiting on, I have been doing my fair share on here. My husband i seems to be loosing the abilities to use the electronic gadgets, just recently I had to our sons number for him on the house phone and he has not used his mobile for a while. I have been reading a thread on here that has been so helpful, so many good tips that just make sense once someone points it out. We moved from Lincolnshire and with hindsight my husband's memory was showing signs of becoming poor, he kept saying he couldn't remember what houses we had veiwed were like, I had to navigate while he was driving around Northamptonshire, funny how the penny doesn't drop at those times, I thought it was just ageing, he still says now its because he is getting older. I am unsure about where we can go and I don't think my husband would go anywhere at the moment. I thought as we haven't had a dementia diagnosis we would not be entitled support yet. Feeling so much better tonight than this morning and its all down to being on here, thank you for the chat

 

[PJ]

Hi, I had a 2nd CT scan in just over a year at the end of last year. Each time my results have taken approx 3wks but each time I have chased them myself by phoning the hospital/GP. I’ve been seeing memory clinic on & off for the past 15mths still with no answer.
Please chase up results with the hospital your husband went to.
I do hope you get some answers soon as things sound very stressful for you both.
I’m having a SPECT scan on 6/3 so hope to have some answers too.

 

[yorkie46]

Your stories are so familiar. I have to have surgery on my thumb joints on left hand. When I saw the consultant he said he could deal with both joints at the same time but that would mean no driving for six weeks! As I also help with the care of my five year old grandson on two days a week, taking him to and from school and giving him tea, six weeks is out of the question at the moment. I've opted to have the smaller op done first which is three weeks not driving. His other grandmother who shares the care with me is stepping in to cover two weeks and one week is holiday. Luckily both his parents are in education so have school holidays off work. However this will still cause untold problems. I've managed to persuade my husband that he doesn't need to take me to the hospital, I can go by bus and as its only a local anaesthetic I can get a taxi home. Meals won't be easy because he's no good with cooking. I'm stocked up on ready meals and have a delivery some days from a local company who deliver hot meals a bit like meals on wheels. Hopefully it will work out OK. Shopping will be largely online. With all these arrangements he won't need to drive very much. Everything takes so much planning but he has no idea, for him it all just happens. Well the visit to the garage went better than I could have hoped. He liked the automatic car we went to look at, need to test drive when I can drive again after the thumb op. If he's happy with that the next stumbling block will be the finances. He always finds it difficult to understand and always expects a higher price for our car than is sensible but they know him at the garage now so they humour him! I'm thinking of going in myself in advance to go through the figures so that I know and am ready to deal with it. Hopefully things will go smoothly. At least we have progressed from his first suggestion when my hands started causing problems. He said then that I'd have to have my thumb numbed, when I said I wasn't sure I wanted a numb thumb eve if they could do that he told me it was that or pain so I could take my choice but we couldn't afford to change the car!! Such sympathy. I'm having another sleepless night, not worrying about anything in particular but this often happens these days. If he has a sleepless night he sleeps during the day (and when he doesn't too!) but I don't have that luxury. I know he'll be devastated if they diagnose dementia but I still feel that overall a diagnosis would be so much better than this limbo. Good luck Pipeth with the house situation, it certainly seems you're in a catch 22 situation. I still wish we'd moved into the flat but there's no going back now, my only chance will be if he gets much worse and I can make the decision. What am I saying 'if' for, I know he'll get much worse, the only question now is when!

 

[Moggymad]

Hi @Pipeth it may be worth getting in touch with Age Uk Northamptonshire to see what support is available where you live. As a carer & with your family some distance away, there may be times when you will need help & I know they have a number of services that could be useful for yourself & your husband. Telephone 01604 611200. Don't think the diagnosis will be that necessary to access their services, it's the need that's important. Best wishes.

 

[Jordrecr]

My husband diagnosed with mild cognitive impairment in 2015, had MRI November 14th 2017 with result still being waited for. Memory is worse and behaviours affecting our lives and family life. Feeling total isolated and worn out at the moment. I feel I have made a big mistake, in that we saw a bungalow close by to our existing home, one that we would have purchased four years ago if it had been on the market at that time. We agreed to go and have a look and he loved it, a larger garden and a older property with traditional layout, our bungalow at the moment is open plan which we have found difficult to live with, my husband has never really settled here. We viewed three times, he was happy and excited each time so decided to put our property on the market. It sold within a week and we agreed to purchasing the older bungalow. Since then my husband has been happy during the day about the move but woke up during the night and in the mornings not wanting to move. He has walked around to the everyday to check it out again and come back happy with the move once more. Yesterday he went round during the day and came back and after talking we agreed to pull out, he then went again in the evening and came back saying he was happy again, he had met the man next door and walked around the area and loved the garden. I am now waiting for him to wake up 10am, after another sleepness night to see how he feels about it today. I am totally confused as to what to do, is this another stage? Does he have dementia or is this over anxiety? Sorry for the long explanation.

I totally understand this situation. Live 212 miles from dad, lost mum eight months ago and he struggling living alone, sees no one for days on end. Visited a care home and he loved it would say I’ll go to there in the future. Eight months later we had to make the decision . He was all for it insistent we must make sure they had a room for him, next morning woke crying distressed I’m making the wrong decision. In the end we just said we’re movung you in a weeks time as I realised he’d never make the decision. Every morning he would wake totally changing his mind. I would talk him round then in the day he would be fine and excited about moving. The day came and we moved him but that Morning again he changed his mind. He’s been there for 2 weeks and today phoned saying he hates it wants to go home. I know he can’t, feel awful making decisions for him but just can’t make them as he can’t retain the concept of why he’s making them. Your husbands changing of mind exactly mirrors what my dad does hearing your story makes realise I’m not imagining it as you forget what normal is around dementia patients.

 

[Spamar]

Morning! Inability to read maps was OHs first sign, in retrospect. 1983,we were in Southampton, I was driving. I missed a turning, said to him, look at the map and tell me where to turn. He just stared blankly ahead. His inability to read a map ‘on the go’ became a family joke. No more than that.
It appeared that he could read maps at home, spread out on the table, but I think, now, he was taking his cues from me!
When we moved here, I drive an odd way, when asked why, I said, cos OH already knows half that route. I don’t think they understood!
After we moved he started getting lost on the way home from golf. He knew he had to get to W. One signpost said K. Even though he knew K, he never realised that it was on the way to W! So he got lost in the lanes until he came across the A road, which pointed to W!
But back in 1983, dementia never occurred to us. But he functioned normally for many years after that.I see there’s lots of answers for you, plus some sound advice!
Keep in touch!

 

[Pipeth]

Hi, I had a 2nd CT scan in just over a year at the end of last year. Each time my results have taken approx 3wks but each time I have chased them myself by phoning the hospital/GP. I’ve been seeing memory clinic on & off for the past 15mths still with no answer.
Please chase up results with the hospital your husband went to.
I do hope you get some answers soon as things sound very stressful for you both.
I’m having a SPECT scan on 6/3 so hope to have some answers too.

Thank you PJ I will get on and chase it up, I have rung the memory clinic once, but was given short answer, mri not back. Will get back to GP and try hospital. Thank you for Sharing.

 

[Pipeth]

Thank you all for the help, will answer everyone later.

 

[Grahamstown]

Thank you all for the help, will answer everyone later.

You have been so supportive to me and now I hope that you are able to take comfort from the forums yourself. There is no easy answer but just carry on as best one can with some of the excellent tips on here.

 

[Pipeth]

Terrible day, Husband took himself off to look at the bungalow we wanted to move to to 'make up his mind'. Came back saying he was going to the estate agents to tell them we want to move there... rest of the day spent listening to him saying he was sorry he changed his mind, will the estate agents take us back, can we go tomorrow to see the estate agents, I love that place, I want to move there... I know now thanks to your replies on here that this is the way it's going to be. He seems quite lucid today and determined that is what he wants, so I guess its watch this space tomorrow. i know I need to take control, but I'm an exhausted and as confused as he is now. He asleep now! So expecting another sleepless night tonight.

 

[Pipeth]

Morning! Inability to read maps was OHs first sign, in retrospect. 1983,we were in Southampton, I was driving. I missed a turning, said to him, look at the map and tell me where to turn. He just stared blankly ahead. His inability to read a map ‘on the go’ became a family joke. No more than that.
It appeared that he could read maps at home, spread out on the table, but I think, now, he was taking his cues from me!
When we moved here, I drive an odd way, when asked why, I said, cos OH already knows half that route. I don’t think they understood!
After we moved he started getting lost on the way home from golf. He knew he had to get to W. One signpost said K. Even though he knew K, he never realised that it was on the way to W! So he got lost in the lanes until he came across the A road, which pointed to W!
But back in 1983, dementia never occurred to us. But he functioned normally for many years after that.I see there’s lots of answers for you, plus some sound advice!
Keep in touch!

My map reading skills were rubbish

Your stories are so familiar. I have to have surgery on my thumb joints on left hand. When I saw the consultant he said he could deal with both joints at the same time but that would mean no driving for six weeks! As I also help with the care of my five year old grandson on two days a week, taking him to and from school and giving him tea, six weeks is out of the question at the moment. I've opted to have the smaller op done first which is three weeks not driving. His other grandmother who shares the care with me is stepping in to cover two weeks and one week is holiday. Luckily both his parents are in education so have school holidays off work. However this will still cause untold problems. I've managed to persuade my husband that he doesn't need to take me to the hospital, I can go by bus and as its only a local anaesthetic I can get a taxi home. Meals won't be easy because he's no good with cooking. I'm stocked up on ready meals and have a delivery some days from a local company who deliver hot meals a bit like meals on wheels. Hopefully it will work out OK. Shopping will be largely online. With all these arrangements he won't need to drive very much. Everything takes so much planning but he has no idea, for him it all just happens. Well the visit to the garage went better than I could have hoped. He liked the automatic car we went to look at, need to test drive when I can drive again after the thumb op. If he's happy with that the next stumbling block will be the finances. He always finds it difficult to understand and always expects a higher price for our car than is sensible but they know him at the garage now so they humour him! I'm thinking of going in myself in advance to go through the figures so that I know and am ready to deal with it. Hopefully things will go smoothly. At least we have progressed from his first suggestion when my hands started causing problems. He said then that I'd have to have my thumb numbed, when I said I wasn't sure I wanted a numb thumb eve if they could do that he told me it was that or pain so I could take my choice but we couldn't afford to change the car!! Such sympathy. I'm having another sleepless night, not worrying about anything in particular but this often happens these days. If he has a sleepless night he sleeps during the day (and when he doesn't too!) but I don't have that luxury. I know he'll be devastated if they diagnose dementia but I still feel that overall a diagnosis would be so much better than this limbo. Good luck Pipeth with the house situation, it certainly seems you're in a catch 22 situation. I still wish we'd moved into the flat but there's no going back now, my only chance will be if he gets much worse and I can make the decision. What am I saying 'if' for, I know he'll get much worse, the only question now is when!

Yorkie46 Pleased to hear you have had a good result over a new car. Good luck with the finances, for the first time I have seen my hubby totally confused over finance, he was always so on top of everything before. Will be interested to hear about you thumb op, its my thumb joints that are causing me the most pain at the moment.

 

[Pipeth]

Hi @Pipeth it may be worth getting in touch with Age Uk Northamptonshire to see what support is available where you live. As a carer & with your family some distance away, there may be times when you will need help & I know they have a number of services that could be useful for yourself & your husband. Telephone 01604 611200. Don't think the diagnosis will be that necessary to access their services, it's the need that's important. Best wishes.

Thank you Moggymad, Age uk could be a help, I hadn't thought of them. I guess from your name you love cats, we have a Persian, who is proving to be worth her weight in gold. My hubby has become more and more attached to her, he is now constantly checking up on her where shouts. She has been a good distraction I only have to say where is Charlie and any problem is overtaken by him looking for her, thanks to being on here I have learnt some tactics.

 

[PJ]

Terrible day, Husband took himself off to look at the bungalow we wanted to move to to 'make up his mind'. Came back saying he was going to the estate agents to tell them we want to move there... rest of the day spent listening to him saying he was sorry he changed his mind, will the estate agents take us back, can we go tomorrow to see the estate agents, I love that place, I want to move there... I know now thanks to your replies on here that this is the way it's going to be. He seems quite lucid today and determined that is what he wants, so I guess its watch this space tomorrow. i know I need to take control, but I'm an exhausted and as confused as he is now. He asleep now! So expecting another sleepless night tonight.

I hope tonight is peaceful for both of you. You sound completely worn out with it all. Night night

 

[Pipeth]

Morning! Inability to read maps was OHs first sign, in retrospect. 1983,we were in Southampton, I was driving. I missed a turning, said to him, look at the map and tell me where to turn. He just stared blankly ahead. His inability to read a map ‘on the go’ became a family joke. No more than that.
It appeared that he could read maps at home, spread out on the table, but I think, now, he was taking his cues from me!
When we moved here, I drive an odd way, when asked why, I said, cos OH already knows half that route. I don’t think they understood!
After we moved he started getting lost on the way home from golf. He knew he had to get to W. One signpost said K. Even though he knew K, he never realised that it was on the way to W! So he got lost in the lanes until he came across the A road, which pointed to W!
But back in 1983, dementia never occurred to us. But he functioned normally for many years after that.I see there’s lots of answers for you, plus some sound advice!
Keep in touch!

Spamar, Once again your words help. It was while we moved here that navigation problems started, his confidence driving around the new county has never improved in the three year we have been here. I tried to navigate with maps but being a non driver it usually turned out to be quite stressful . Then we used gps on my mobile which worked well for a while. He is not enjoying driving long distant now but wants to keep driving locally. Such a shame as driving was one thing he enjoyed, plus he loves his car. Still going in a loop about moving, he is all for it again today...I have just stuck to my guns...but I am expecting a disturbed night... With hindsight I wish we never saw the bungalow now, to save him from
this anxiety, I am not going to say anything about it in the morning, hoping he won't either. Thank you for the chat.