Two years to get this bad. What now?

margherita

Registered User
May 30, 2017
3,280
0
Italy, Milan and Acqui Terme
This time of day has got to be one of my favourite times. The washing done, dishwasher on, all quiet in my wife's room, classic fm on a sixty minute sleep timer, lights out and sleep not far away. Such simple pleasures.:)
The only pleasures..:(
I see the half empty glass, I'm afraid. Anyway I too like the time I can spend in my room downstairs, while my husband is sleeping upstairs. I need all this.
Hope you are having a peaceful night, Al
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
I also look forward to the evening without him there now especially when he has been secretly been drinking. I send him up to bed then because I can’t stand the repentance and self pity.
 

dancer12

Registered User
Jan 9, 2017
498
0
Mississauga
So many of us have similar stories - I wonder why, and it is not just the dementia aspects.

I too am 69, I too supported my husbands career at the expense of my own. I too, worked from home to boost the family income, whilst he had holidays abroad and furthered himself.

I, too, lost a child. This lovely lad was fostered by us from the age of 4 months and died aged 13 - he had cerebral palsy. I brought up, also, two sons of our own and an adopted daughter.

I, however, ended the marriage after 26 years thinking I could get my life on track.

It was then my dear boy died, and completely muddled I made a second, horrible marriage. I am not saying any more - I brought up his two children who have autistic spectrum problems.

I am now a widow from that marriage, thankfully.

Roll on 'me time' - met a lovely fellow, fell in love, moved in together and after 3 or 4 years it was obvious that he had problems.

My career has again been dumped ( I was a very successful genealogist) I am now 24/7 carer and he has all kinds of problems mental and physical.

My life has completely gone down hill along with his....... I have spent all last year being furious as everything imploded around me - lack of income being a huge factor - would you believe my State Pension is 49p - yes 49p - a week too much to get Pension Credit....

But do we get past the anger? I think we most likely do, but I don't think we ever get past the sheer disappointment.

Hi MaryJoan:
So many of us have similar stories - I wonder why, and it is not just the dementia aspects.

I too am 69, I too supported my husbands career at the expense of my own. I too, worked from home to boost the family income, whilst he had holidays abroad and furthered himself.

I, too, lost a child. This lovely lad was fostered by us from the age of 4 months and died aged 13 - he had cerebral palsy. I brought up, also, two sons of our own and an adopted daughter.

I, however, ended the marriage after 26 years thinking I could get my life on track.

It was then my dear boy died, and completely muddled I made a second, horrible marriage. I am not saying any more - I brought up his two children who have autistic spectrum problems.

I am now a widow from that marriage, thankfully.

Roll on 'me time' - met a lovely fellow, fell in love, moved in together and after 3 or 4 years it was obvious that he had problems.

My career has again been dumped ( I was a very successful genealogist) I am now 24/7 carer and he has all kinds of problems mental and physical.

My life has completely gone down hill along with his....... I have spent all last year being furious as everything imploded around me - lack of income being a huge factor - would you believe my State Pension is 49p - yes 49p - a week too much to get Pension Credit....

But do we get past the anger? I think we most likely do, but I don't think we ever get past the sheer disappointment.

Hi Mary-Joan:

I don't believe we ever get over the anger, it just fades and eventually re-appears as resentment. I know mine has big time .So sorry for the loss of your child and all the turmoil you have been through in your life.
 

Quenelise

Registered User
Oct 7, 2017
151
0
So many of us have similar stories - I wonder why, and it is not just the dementia aspects.

I too am 69, I too supported my husbands career at the expense of my own. I too, worked from home to boost the family income, whilst he had holidays abroad and furthered himself.

I, too, lost a child. This lovely lad was fostered by us from the age of 4 months and died aged 13 - he had cerebral palsy. I brought up, also, two sons of our own and an adopted daughter.

I, however, ended the marriage after 26 years thinking I could get my life on track.

It was then my dear boy died, and completely muddled I made a second, horrible marriage. I am not saying any more - I brought up his two children who have autistic spectrum problems.

I am now a widow from that marriage, thankfully.

Roll on 'me time' - met a lovely fellow, fell in love, moved in together and after 3 or 4 years it was obvious that he had problems.

My career has again been dumped ( I was a very successful genealogist) I am now 24/7 carer and he has all kinds of problems mental and physical.

My life has completely gone down hill along with his....... I have spent all last year being furious as everything imploded around me - lack of income being a huge factor - would you believe my State Pension is 49p - yes 49p - a week too much to get Pension Credit....

But do we get past the anger? I think we most likely do, but I don't think we ever get past the sheer disappointment.
Hi maryjoan. You have been through so much, so much heartache as well. My OH and I are in the early stages of the pathway, and the giving up of work does scare me.
49p is an appalling amount and to stop Pension Credit as a result? Leaves me speechless.
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi again. Me time starts here. Woo hooo_O I've just put her to bed, the bedding is now clean again, for now. The last few days have seen several bedding changes. It gets me how she always tries to blame someone else, usually our youngest daughter, she got the blame even though she was away. Today I invested in a mattress protector, horses bolting and stable doors and all that. Clean sheets at five o'clock , half past five said sheet soiled with blood. She has a scratching habit. I've just read the post so far and I've realised it sounds like I'm whingeing, well I am and it's allowed. ;) I'm not quite out of the woods yet, , I'm drying her favourite blue pyjamas. Until I take her those there's always a chance she'll come back downstairs.
Earlier on today we went to our usual visit to asda, it's like a second home :) while there I bought some flowers , they do brighten a room, we got a few other things too, including that mattress protector. When we got home we had a light lunch and then like many other afternoons, yours truly here , fell asleep. I just can't stay awake! I'm sleeping fine at night, but if we're not going anywhere I'm usually out cold by mid afternoon.:eek:. Anyway, on waking my wife said she'd put the flowers in vases . She tried, but I was left with the task of putting it right . Those little sachets of that liquid plant food, I didn't know how far it could be spread:)every surface in the kitchen is now coated with the sticky substance , a bit like the other night but that was a different substance, I'll not go into detail. Anyway I'm already feeling better, you can't beat a good download on here. I know things aren't getting any better, but I also know there are plenty worse off than we are.
I'm now feeling so much better, so much in fact I'm going to get something to eat:)So, long live me time :)til next post, goodnight. Al.o_O
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi. An afternoon post for a change. All thanks to Paddington 2, ninety minutes peace. Children's books and films fascinate her now. The peteŕ rabbit movie will be the next big thing. While these things keep her occupied and happy, she won't be shouting at anyone else while it's on the tv. The tablet battery is down to 5% and I'm struggling to keep my eyes open, it's a toss up which is going to give up first. I really enjoy these quiet times, much better than when she's shouting and raving about ,, well , just about anything. No one is safe. So on this quiet Sunday afternoon I'll sit quietly and watch the film with her and for a short while forget about everything and just enjoy her company. A good time to put the kettle on, mmm, no sugar, just a splash of milk :):) tea, best drink of the day. Al.
 

dancer12

Registered User
Jan 9, 2017
498
0
Mississauga
Hi. An afternoon post for a change. All thanks to Paddington 2, ninety minutes peace. Children's books and films fascinate her now. The peteŕ rabbit movie will be the next big thing. While these things keep her occupied and happy, she won't be shouting at anyone else while it's on the tv. The tablet battery is down to 5% and I'm struggling to keep my eyes open, it's a toss up which is going to give up first. I really enjoy these quiet times, much better than when she's shouting and raving about ,, well , just about anything. No one is safe. So on this quiet Sunday afternoon I'll sit quietly and watch the film with her and for a short while forget about everything and just enjoy her company. A good time to put the kettle on, mmm, no sugar, just a splash of milk :):) tea, best drink of the day. Al.

Hi:

What did our forefathers & foremothers ever do without Tv? You sound so much more relaxed now. :) Let the quiet times roll.
 

Rolypoly

Registered User
Jan 15, 2018
2,319
0
Lovely to hear you so upbeat @AL60. Long may it continue.

Just a thought but could you get another pair of her favourite pjs to have on standby?
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi. Normal service resumed shortly after the last post but don't worry, it was good while it lasted.o_Othink I'll change my name to frazzled alo_O. For a time today the weather was almost springlike, it gave me the opportunity to wash the bedding again. You can't beat the smell of line dried washing when you're curled up in bed. Sadly it's wasted on my wife, i think it is anyway. I think I might have to buy a third mattress protector, then I'll have a bit longer to get them washed and dry. And, Rolypoly, yes another pair of her favourite pj's would definitely be a good idea. This morning she thought it a good idea to pull the mattress protector to one side and dirty the mattress. Sorry to go on about this subject but this is a new development for me. There's been the occasional incident but now it's happening all the time. Both me and the washing machine are struggling to keep up.:(However, we are keeping up, just about :)
The dietician is due to call tomorrow afternoon. Luckily I've managed to keep the date on my calendar. I say luckily because shortly after receiving the letter my wife tore it up in temper. That's how she is nowadays, temper tantrums that come from nowhere interspersed with quieter moments. I'm sure she uses the quieter times to charge her batteries for the next rage. At least I got some time to myself tonight, which is fine but sometimes you just wish things were like they used to be:rolleyes:oh well, I've had enough for today so lights out and goodnight from Al. o_O
 

margherita

Registered User
May 30, 2017
3,280
0
Italy, Milan and Acqui Terme
Hi. Normal service resumed shortly after the last post but don't worry, it was good while it lasted.o_Othink I'll change my name to frazzled alo_O. For a time today the weather was almost springlike, it gave me the opportunity to wash the bedding again. You can't beat the smell of line dried washing when you're curled up in bed. Sadly it's wasted on my wife, i think it is anyway. I think I might have to buy a third mattress protector, then I'll have a bit longer to get them washed and dry. And, Rolypoly, yes another pair of her favourite pj's would definitely be a good idea. This morning she thought it a good idea to pull the mattress protector to one side and dirty the mattress. Sorry to go on about this subject but this is a new development for me. There's been the occasional incident but now it's happening all the time. Both me and the washing machine are struggling to keep up.:(However, we are keeping up, just about :)
The dietician is due to call tomorrow afternoon. Luckily I've managed to keep the date on my calendar. I say luckily because shortly after receiving the letter my wife tore it up in temper. That's how she is nowadays, temper tantrums that come from nowhere interspersed with quieter moments. I'm sure she uses the quieter times to charge her batteries for the next rage. At least I got some time to myself tonight, which is fine but sometimes you just wish things were like they used to be:rolleyes:oh well, I've had enough for today so lights out and goodnight from Al. o_O
Hope you are sound asleep now.
Despite the light tone you use and your sense of humour, it is clear how tired you are.
 

MAMMYGRANNY

Registered User
Jan 26, 2016
69
0
Hi Al,
I really enjoy reading your humorous posts about your situation you have a great attitude!:)
When my husband still slept in our bed
( sadly he's in a hospital bed now)
I bought online a really good mattress protector (stable doors too!) its like those used in hotels. It completely encloses the mattress and has a zip. Over that I put a fitted sheet.
On top of that I put a pink/blue mattress protector I think they're called a Kylie. Over that I put another fitted sheet. Never had a wet mattress again although he wet the bed twice a night even with pads on, :eek: and only needed to change the top sheet and Kylie usually.
I copied this cunning plan from another poster on this site God bless them (I've forgotten who exactly:oops:)
I had four mattress protectors by the way and needed every one of them!
If you use a fitted sheet on top your wife might be less likely to investigate what's under it!
Hope you don't get any more verbal goings over from your wife that must be very hard to take.
 

Rolypoly

Registered User
Jan 15, 2018
2,319
0
@MAMMYGRANNY beat me to it. I was going to suggest getting a similar mattress protector. Trouble is I can’t remember where I saw it, sorry :oops:.

Mum isn’t as bad as Mrs AL60 but I am gradually going to build up bed protection so that hopefully she won’t notice but it will be in place when the time comes. I’m usually in a stable door position so it will make a change (providing I actually get round to doing it!).

I too love the smell of line dried washing which has been possible lately.

Hope you can soon enjoy some quieter time.
 

kindred

Registered User
Apr 8, 2018
2,937
0
I have read all the posts on this strand. Thank you all. I am new to this forum because I have been frozen with fear at the thought of reading how much worse life could get ... I have been sole carer for OH with az for nearly five years. I am quite tiny and he is well over six feet tall. It has been hard and I see I could have had your amazing comradeship. My experience of social support such as it wasn't was that it was demeaning and pointless. In the middle of one of the worst weeks ever, they offered me a hot stone massage. So, I cracked on, every night writing an hundred lines, I must endure ... Now, being a mental health professional, even I can see I was broken. My OH deteriorated so quickly that I faced all kind of trauma in short order, not to mention the endless destructiveness of the house - pulled radiator off wall, flood, ruined all the electrics, mucked up the gas, stuffed towels down the toilet etc etc etc.
I begged social services for assurance that if I was too ill to manage, there would be some way OHcould be cared for. But at the dreaded hint that I might mean care home, they lectured me on deprivation of liberty, and even told me that if I phoned Care direct, I would be, and I quote ASTONISHED AT HOW LITTLE HELP I WOULD GET. They said this twice, just so I could hear it fully. They said all they could do was send me a list of local care homes, so I said, good. The list came with the contact details blanked out. I would need to be a self-funder as OH has savings of £60K. And I accept this completely, was never trying to get anything for free.

So I continued to write my hundred lines and kept going, trying to make life as valuable as poss for beloved OH (we have been together since University in the sixties). I was getting iller and iller and then of course, the train crash. He had a dreadful fall, had to go to A and E and was admitted to hospital. This is where things changed. The doctors assured me they would not be admitting him home, I could not manage. It took two or three of them to manage what I had been doing alone for years. The wonderful social worker signed a best interest statement saying he needed residential care and even helped me find a suitable vacancy.
That was a month ago. OH is now happily settled in a very loving specialist dementia nursing home and I am there every day for as long as I can be.

Did we have to go through that? Was there any other way? I am becoming less frozen, still wake every hour thinking I hear OH calling. For three years had hardly any sleep, kept going on professionalism and caffeine.

This is my question again, did we have to go through that?

Yet I read what you wonderful guys post and I see that yes, we did. Thank you all with all my heart. I wish I had had the courage to go online before.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
With apologies to Al for the tangent, and how did the dietician's visit go yesterday?

@kindred, if nobody has said, hello and welcome to Talking Point. I am very sorry to hear about your husband and that you have needed to find your way here, but I hope you will feel welcome and that TP will be helpful for you. I also found it difficult to go online but TP has been a kind and welcome place for me, a life saver, in fact.

Please do feel free to post comments and questions. If you have any difficulty navigating, or would like to start your own thread, or anything at all technical on the site, please do not hesitate to speak up as there are people here to help.

I am especially sorry to hear of the dreadful and draining experience you had caring on your own for your OH, and the lack of help from SS and the authorities, and that you had to wait for the crisis to occur, as sadly so many do. I am sure just the physical strain alone must have been burdensome. (I am also petite and my OH is also over six feet and I don't know how I would ever be able to physically manage caring for him, so I can only imagine.)

I should think you would need some time to recover from the physical and emotional burden and that you must be tired as well as stressed, and even perhaps having something like PTSD (post traumatic dementia caring disorder, if that were a diagnosis). I hope you will allow yourself to rest and recover and look after yourself, physically and otherwise, so that you can continue to care for your OH. Very best wishes to you.
 

kindred

Registered User
Apr 8, 2018
2,937
0
Oh thank you so very much for your kindness. I will continue to post, I am so glad I have found you all.
 

AL60

Registered User
Oct 14, 2016
509
0
Cheshire
Hi @AL60,
How are you?
I hoped I would find your usual late night post.
I wish you a good day, as far as possible
Hi. I have been meaning to post several times since Monday but for some reason I haven't somehow had the will or the energy to do it. It's been a long week with lots of washing to get through. She's really been getting into some awful states. A couple of days ago she went into the downstairs toilet and called out to ask who had made such a mess on the floor. Then came out absolutely covered, i had to get her undressed and into the shower and all she could do was complain about the mess our daughter had made. Always someone else. I don't think we're talking of incontinence, it's more of a coordination thing. Whatever it is it isn't easy. I don't feel as though I've anything positive to post tonight. I just keep thinking it can only get worse :( I sometimes think what a strange and alien world she must feel she's living in.:( What next I wonder. I know it's unhealthy to think what the coming weeks , months and years will bring but weeks like this you can't help but worry. I should be more appreciative of the 'now', I've said it often enough but sometimes you just feel like you've had enough. I can promise this though . I will bounce back, this is only a temporary dip on this rollercoaster ride on the dementia journey. I'm going to switch off now, time to sleep, one long blink away from morning and it starts all over, perhaps tomorrow will bring a good day. Here's hoping ,, goodnight , Al:).