Good morning. Seven hours sleep can't be bad. Just woken up to the sounds of the dawn chorus heralding the start of another new day. Except in this case the dawn chorus consists of several flushes of the toilet followed by what sounds like a Greek wedding party downstairs as she empties the dishwasher. She does try. Anyway, it's gone quiet, so I'll get up now, find a cup with a handle attached and have my first cup of tea of a new day of a new week. Al.
Two years to get this bad. What now?
- Thread starter AL60
- Start date
Al, how I empathise with you in your plight. I am in my mid 70s as is my partner, Pauline, and she was diagnosed with Alzheimer's just over 12 months ago but like others it started for me a couple of years earlier with the changes.
In my employment I had lots of pressure and stress but mostly of the good sort mixed with stimulating conversation and, as I do to this day, a love of news and current affairs programmes on TV.
Now life has very different stresses and pressures, no effective conversation and constant repetion of of many old TV programmes such as, The Bill, being her only choice of viewing, all making life lonely. Thankfully there are good days and she still comes caravanning with me although most holidays don't appeal to her, well they don't if she can't access her TV programmes, good luch mate.
This really is a brilliant forum to get advice, share experience and yes, to vent our feelings.
I share the feelings of many other carers, like AL60 and Agzy, as watching your loved one slowly disappear into their own world is indescribably hard. So to, is turning from spouse to carer.
I am in some aspects, quite fortunate in that my dear wife has passed through the earlier stages, where she would get frustrated and tetchy. She's now in a fairly happy place, always laughing and seems to sleep through most nights without any drama (touch wood I don't tempt fate?).
She'll happily watch anything on TV, as she finds almost everything amusing. People in our local pub think she's great because of her manor - though none have yet taken her of my hands for a week or two - lol.
I would, however, trade this to see her back to her old independent, chatty, argumentative self! To not having to plan your days around dressing, toileting, cooking and hunting down all those items she's "tidied" away during the day. I miss getting her advice and opinion on all sorts of things.
I never realised that living with someone could be this lonely!!
At least the weather is improving?
Phil
I share the feelings of many other carers, like AL60 and Agzy, as watching your loved one slowly disappear into their own world is indescribably hard. So to, is turning from spouse to carer.
I am in some aspects, quite fortunate in that my dear wife has passed through the earlier stages, where she would get frustrated and tetchy. She's now in a fairly happy place, always laughing and seems to sleep through most nights without any drama (touch wood I don't tempt fate?).
She'll happily watch anything on TV, as she finds almost everything amusing. People in our local pub think she's great because of her manor - though none have yet taken her of my hands for a week or two - lol.
I would, however, trade this to see her back to her old independent, chatty, argumentative self! To not having to plan your days around dressing, toileting, cooking and hunting down all those items she's "tidied" away during the day. I miss getting her advice and opinion on all sorts of things.
I never realised that living with someone could be this lonely!!
At least the weather is improving?
Phil
Hi. I had no intention of posting on here tonight. I may not post yet , I'm only a click away from deleting. Yet, strangely drawn, like a moth to the flame here last am, once again. I'm having trouble making the transition from everyday normal, to becoming full time carer. As if that wasn't bad enough my wife is having even more trouble coming to terms with being everyday cared for. After all , she's fine, there's nothing she can't do, at least, thinks she can't do. While on the subject of beige a carer, I think I could cope better if I was just left to do it without the added stress of form filling and visitors from the council social services etc. I know they mean well and are only concerned for our health and wellbeing but it stresses the he'll out of my wife. She absolutely hates it. Oh well, roll on Monday morning, there's another visitor from the welfare office to assist in filling a benefit claim form. More stress, it simply isn't worth it. Oh fill the forms in, claim what you can, you've paid in all your life, you deserve it. It still isn't worth the stress and upset it will cause for her. Sadly there are no friends or family available to assist and sit with us as a distraction.
I've mentioned in other, earlier posts about those bombshell moments, there's so much deterioration taken place over the last several months it's hard to pick any out. But yesterday, while going through some old photos, she came across one of her parents, she asked me if they were still alive. Sadly I told her , no, if they were, we would certainly visit. Dementia, got to be the work of the devil hasn't it.
Oh well, it's my birthday next week, but I'll always be Al60, so a family get together this weekend should brighten things up a bit, quite looking forward to it. Look at the time! Dawn chorus soon, best get some sleepgoodnight, Al60 (forever)
I've mentioned in other, earlier posts about those bombshell moments, there's so much deterioration taken place over the last several months it's hard to pick any out. But yesterday, while going through some old photos, she came across one of her parents, she asked me if they were still alive. Sadly I told her , no, if they were, we would certainly visit. Dementia, got to be the work of the devil hasn't it.
Oh well, it's my birthday next week, but I'll always be Al60, so a family get together this weekend should brighten things up a bit, quite looking forward to it. Look at the time! Dawn chorus soon, best get some sleepgoodnight, Al60 (forever)
Leave the delete button alone and keep posting AL60, we all need each other. Like you I have no family or friends close who can occupy my husband when I have my first form coming shortly. I'm not looking forward to it.
I hope you have a good time on your birthday.
I hope you have a good time on your birthday.
Try to keep your patience, love, kindness, understanding and gentleness at home and bring your emotions, anger, confusion & questions here.
Hi.Here we go again. Another day, another year older but certainly no wiser. If my evenings and nights are the best times of my day. Then mornings, usually about now, must be the worst. Every time I wake, within seconds, reality hits. Then thoughts of how to get through another day. But get through it, I will. I always do. But I'm finding it harder to keep patience with her. I'll post again later, just to say how the day has been, and to prove I'm still here. Al.
Hi:
Holidays & special days are the worst. It brings tears to my eyes just thinking about them.
The only thing that gets me through the day sometimes is my belief that everything happens for a reason. The reason behind this illness must be a real dozzi.
Hope you had/are having a nice day.
Holidays & special days are the worst. It brings tears to my eyes just thinking about them.
The only thing that gets me through the day sometimes is my belief that everything happens for a reason. The reason behind this illness must be a real dozzi.
Hope you had/are having a nice day.
Hi again. Once again I find I've been stressing over nothing. At eight this morning I posted here and said how much I was dreading another day. At least that's how it felt. Well, here I am again. And it wasn't that bad. Not perfect, things never are. But, whether it was the excellent spring weather or the fact that I managed to achieve something out in the garden, I now feel fully recharged, ready for another day tomorrow. I'm not going to lie, today did have its moments and yes, there were times I felt like screaming but I'm pleased to say I managed to keep it together. Now that really was an achievement. I want another day like today, sorry if that makes me sound greedy, but, hey come on, surely two good days back to back isn't too much to ask. No plans for tomorrow, just going to take what comes my way and enjoy. So, signing off for now, Al.
Hi there AL60. I hope your day tomorrow goes well. I dread every morning going in to wake him and knowing that he will smile and be lovely until I say Ok" lets get you up my love". And so the day begins. Look out eggshells here I come.xx
Hi. I so know that feeling. The soles of my feet have toughened up considerably during the last couple of years. And it's all down to those eggshells. I'm sure tomorrow will be OK, I'm going to do my damndest to make it go well, told you before, I'm an optimist Al
Hi again. I thought I was hoping for too much. Two good days, back to back. Not a chance. And it was all down to one word. Last Monday we had a visit from a woman from the welfare office. She came out to help us/me to fill one of those benefit claim forms. I wasn't looking forward to it, I was dreading it, in fact, I needn't have worried, she was excellent, she really put my wife at ease and was extremely tactful with the various questions. Once again worrying about something needlessly. On Tuesday morning, another visitor, this time to assess our needs for a sitting service, four hours a week, what could possibly be wrong with that. Well, on the face of it, nothing, the visit went well. Two days later we received a copy of the letter documenting what was discussed at the meeting. Still no problem, the letter was addressed to my wife, she read it and seemed quite happy with it. So, when I came downstairs this morning I was surprised to find her reading the same letter over and over again, that same letter, which was fine yesterday, what could possibly have upset her. One word. I'm not having that. They can have the letter back, it isn't right, its disgusting what they've put, and so on and so on. Of course, this lead to other things, like, I don't need anyone looking after me, I can do perfectly fine on my own etc, I've heard it many times. The word, it was to be found under sexual orientation, heterosexual, it's now been crossed out and a rather obvious NO written in black pen next to it. She then spent an hour trying to delete the word from the Internet. That seems to be the way she tries to cope with many of her problems, if there's something she doesn't like or want, just delete it. No amount of explanation can convince her people can't just be deleted. Anyway the day started badly and never quite recovered. At least the sun shone so I was able to lose myself in the garden once again.
By the way, as I was trying to explain to her about, that word, I told her I too was heterosexual, she was shocked, forty years married and never knew. Dementia is more than memory loss, power to reason, common sense, whole personality changes. It really is starting to feel like I'm living with a stranger in the house. Not to worry, let's see what tomorrow brings. Al.
By the way, as I was trying to explain to her about, that word, I told her I too was heterosexual, she was shocked, forty years married and never knew. Dementia is more than memory loss, power to reason, common sense, whole personality changes. It really is starting to feel like I'm living with a stranger in the house. Not to worry, let's see what tomorrow brings. Al.
Alice nutter
Just saw your 'name' and your location, and wondered how you knew about Alice Nutter? Are you English by chance??
Just saw your 'name' and your location, and wondered how you knew about Alice Nutter? Are you English by chance??
Is caring for someone with dementia the loneliest place to be?
My partner is quite happy, he is self contained, he does not worry, he is totally unconcerned with his diagnosis ( 2 months ago) of vascular dementia. He is home all day recovering from major surgery which made the dementia so much worse. He does a few puzzles and watches dvd's, and will come with me for a short walk around our village.
Me? Well, I cook, I clean, I do all the housework, I garden, most importantly, I care for himself, I also am trying to salvage the remnants of my business which I had to close recently - and trying now to work from home - I am a genealogist. I deal with the mountains of forms and all the people that keep coming in connection with the diagnosis, social services etc etc.
The only thing I am complaining about, really, is that even though my dearest partner lives in the house with me, it is like living alone. There is nothing, no conversation, no affection, no nothing - yet it's only 2 months since he was diagnosed - why does it all seem to be moving so quickly?
I find it really rather scary
rant over
My partner is quite happy, he is self contained, he does not worry, he is totally unconcerned with his diagnosis ( 2 months ago) of vascular dementia. He is home all day recovering from major surgery which made the dementia so much worse. He does a few puzzles and watches dvd's, and will come with me for a short walk around our village.
Me? Well, I cook, I clean, I do all the housework, I garden, most importantly, I care for himself, I also am trying to salvage the remnants of my business which I had to close recently - and trying now to work from home - I am a genealogist. I deal with the mountains of forms and all the people that keep coming in connection with the diagnosis, social services etc etc.
The only thing I am complaining about, really, is that even though my dearest partner lives in the house with me, it is like living alone. There is nothing, no conversation, no affection, no nothing - yet it's only 2 months since he was diagnosed - why does it all seem to be moving so quickly?
I find it really rather scary
rant over
My partner is quite happy, he is self contained, he does not worry, he is totally unconcerned with his diagnosis ( 2 months ago) of vascular dementia. He is home all day recovering from major surgery which made the dementia so much worse. He does a few puzzles and watches dvd's, and will come with me for a short walk around our village.
Me? Well, I cook, I clean, I do all the housework, I garden, most importantly, I care for himself, I also am trying to salvage the remnants of my business which I had to close recently - and trying now to work from home - I am a genealogist. I deal with the mountains of forms and all the people that keep coming in connection with the diagnosis, social services etc etc.
The only thing I am complaining about, really, is that even though my dearest partner lives in the house with me, it is like living alone. There is nothing, no conversation, no affection, no nothing - yet it's only 2 months since he was diagnosed - why does it all seem to be moving so quickly?
I find it really rather scary
rant over
Hi maryjoan:
First of welcome to TP (otherwise known by me as the Information Circle & Beef & Rant Box). Yes it is a lonely place to be. My husband was diagnosed with FTD 5/6 years ago and he laughs about everything. If the roof of the house fell on my head he would think it was funny. It seems to me he doesn't appreciate all I do for him, he says he does but it doesn't do anything to make me feel better. He says why do I worry about little things, well I do - he doesn't that's for sure.
It is a lonely, scary & confusing place, but has good moments too. The other day I couldn't stop crying, he came over, gave me a hug and said I Love You and I didn't even ask him to - that was a good moment. Cherish the good moments.
Again welcome.
Hi Maryjoan. You find it scary, that's because it is, I feel the same, for me, it's not knowing what's next. And feel free to rant too, this is a good place to download at the end of another long day. It certainly works for me.
My wife has also been diagnosed with vascular dementia, it too seems to be progressing quite quickly. Sometimes I find it hard to keep up with the changes. We do manage to have conversations but they do seem to go round in circles and are forgotten almost immediately. It can often seem I'm alone even when we're together. I also had to finish work after forty something years, so many changes and what thanks do you get? You know the answer to that onethen because you've made so many changes, given up so much, bring on the resentment sharply followed by guilt. So, feel free to complain on here, I do. Hang on, I think I just have. Thats it for now, the hour goes on tonight, that can only mean one thing, she'll be up nice and early tomorrow. Should've changed her clock earlier, too late now. Oh well, that's it for another day. Al.
My wife has also been diagnosed with vascular dementia, it too seems to be progressing quite quickly. Sometimes I find it hard to keep up with the changes. We do manage to have conversations but they do seem to go round in circles and are forgotten almost immediately. It can often seem I'm alone even when we're together. I also had to finish work after forty something years, so many changes and what thanks do you get? You know the answer to that onethen because you've made so many changes, given up so much, bring on the resentment sharply followed by guilt. So, feel free to complain on here, I do. Hang on, I think I just have. Thats it for now, the hour goes on tonight, that can only mean one thing, she'll be up nice and early tomorrow. Should've changed her clock earlier, too late now. Oh well, that's it for another day. Al.
Hi maryjoan:
First of welcome to TP (otherwise known by me as the Information Circle & Beef & Rant Box). Yes it is a lonely place to be. My husband was diagnosed with FTD 5/6 years ago and he laughs about everything. If the roof of the house fell on my head he would think it was funny. It seems to me he doesn't appreciate all I do for him, he says he does but it doesn't do anything to make me feel better. He says why do I worry about little things, well I do - he doesn't that's for sure.
It is a lonely, scary & confusing place, but has good moments too. The other day I couldn't stop crying, he came over, gave me a hug and said I Love You and I didn't even ask him to - that was a good moment. Cherish the good moments.
Again welcome.
Hi dancer12
Not sure if it's common with TFD but like your husband, my wife laughs virtually from opening her eyes to going to bed at night. Compared to the aggressive behaviour and mood swings that others on this forum have to cope with, it is something of a blessing. However, like you, I can feel very alone, especially in the evenings, when she tends to keep wandering around the house, rearranging everything not nailed down!
Weekends are a bit better, as we are still able to get down to our local pub on most Fridays, Saturdays and on Sunday afternoons. We've a great bunch of understanding friends there, where I can get to have some more meaningful conversations.
As her incontinence get gradually worse though, I dread the time when such outings are no longer possible.
Keep smiling.
Phil
Just saw your 'name' and your location, and wondered how you knew about Alice Nutter? Are you English by chance??
I am, Mary, I am. My father's family were from Read, near Clitheroe. I haven't lived in the UK for....oh my goodness, nearly thirty years. France for 27 years, running a business and raising children there, and now Massachusetts, my husband's home state. He was diagnosed with FTD last year and is now in a Memory Care residence.
Sent from my iPhone using Talking Point
Just saw your 'name' and your location, and wondered how you knew about Alice Nutter? Are you English by chance??
Second reply: what about you? How do YOU know about Alice Nutter? You're the first person ever to pick up on 'y forum name...I'm intrigued.
Sent from my iPhone using Talking Point
