Two years to get this bad. What now?

[Grahamstown]

If I had dementia or any other incurable illness, I would like others to let me do what makes me happy, no matter how bad it is for my health.
What would happen if you let your husband drink as much as he likes?

What you say is exactly what I wonder, it gives him pleasure, but is probably twice as much as recommended and I fear he would have another episode like the one that put him in hospital six weeks ago. I don’t know exactly what happened but I have no doubt alcohol played a part even though he has suffered from simple fainting in the past. He has a tendency to keep pouring in a social situation and doesn’t seem to be aware of what he is doing as he drinks away as if it’s water. He is running into trouble using his laptop now, something he has used for years so his memory loss is continuing.[/USER]

 

[AL60]

Hi Al and thanks for your response.

I feel that it is me who's the lucky one, as I don't have to deal with any anger issues (other than my own, of course).

Despite the snow (we've thankfully only had a light dusting here in East Kent) we managed to get down to the pub Friday and Saturday night and had a good time with friends. All good things come in threes so it's off down there again this afternoon (old adage being "make the most of it while you can" ).

Wishing you all well and roll on Summer.

Phil

Hi, you're not kidding, make the best of anything, you just have to. As for summer, still seems a long way off. Five or six weeks from now and our Apple trees should be covered in blossom, no sign of any life yet, lot of catching up to do. Hardly any snow here either, it's a rare event in our little corner of the world. I'd best go, people will think they're on the wrong forum's reading this☺Al.

 

[AL60]

@AL60 So true and I feel the same that my troubles are small compared to yours, @Philbo and many other people. I have just been looking back to see when I first posted and I am a bit shocked to see how much has changed in 2 months, from a poor memory and odd behaviour at times to a diagnosis of AD and being forced to change my behaviour in order to survive without constantly being angry. This is a very steep decline and two months later, we have reached a small plateau, I have been the one to adapt to all his little quirks, he has managed to continue with all his odd behaviours with a few of my interventions. The only thing I control is alcohol intake which I have managed to restrict this week for the first time to 14 units at great cost to myself in terms of persistence. So he leads a relatively normal life, looks after himself and can get about, shop, draw money because he remembers his PIN number and does exactly as he pleases himself, other than the above. I feel so angry and exasperated that this man has no insight nor can have ever again. I have just spoken to his cousin who definitely has some cognitive impairment and when I told OH, he said that this cousin drinks like a fish, the implication being that he should be able to do so too. I said that’s him not you but it’s useless to do so because he cannot reason, just feels aggrieved. I got quite angry with him. So I can’t look two years down the line. At the moment I can continue my life in the mornings but already I have had to curtail later in the day and not leave him. I just hope that this continues as long as possible. At times I just wonder if I should stop struggling and let him drink as much as he likes every night. I didn’t mean to write as much as this but once you get going it’s difficult to stop and is a relief.

Hi. I started posting on this thread at the end of November 2016, can't believe it's been that long, it should soon be four years to get this bad, what now! And Al62! No, i draw the line there, Al 60 forever . When I look back at some earlier posts I'm surprised at what used to bother me compared to now. I sometimes feel like I should have appreciated those not quite so bad as I thought times. It's not easy but perhaps I should be more appreciative of now, as I'm sure things can only get worse , much worse. Having said that she certainly doesn't make it easy for me to appreciate anything. It's sad but I really look forward to her saying , I think I'll go to bed now. If on the odd occasion she stays up late I feel cheated, and a bit guilty about it too. We all have different experiences in caring for someone with dementia and we all have different coping strategies, we all feel anger then guilt from time to time and I don't know where I'm going with this post, it's nearly midnight again and I don't know where I'm going to stop.... how about now. Al 60 .

 

[MarHef48]

I appreciate that in these enlightened days we all feel the need to have a balanced diet - and I certainly agree that it's important for YOU to eat well so that you keep healthy - for your wife, right now, it's more about making sure she keeps energy levels up so eating junk is better than not eating - definitely keep trying to slip in fruit and 'healthy' stuff, maybe add in some of the balanced drinks that are on the market, your wife might take to milkshakes made with these, or make your own with fruit, maybe smoothies
dad loved trifles and jellies so I made those with massive amounts of fruit in, and he was happy with that - I cut up fruit so it was bite sized and he ate that more readily than just giving him and apple - at breakfast he had porridge with berries added and a banana
he did move back to eating meals - and then I realised he was also unsure of exactly what to do with cutlery etc - so I ate with him and sat so he could watch what I did and copy (we always had meals at the table so the plate was on a solid surface) - and I sneakily cut up his food before I presented it to him (sometimes I also cut up mine as he was quick to spot differences!)
I found too that dad was just not drinking, so I made sure we had a drink every 2 hours (roughly) so that I knew he had drunk enough during the day - I'm afraid I also 'nagged' him to drink, just gentle prompts eg this is lovely juice, have a few more slurps dad - and I always drank with him so he saw I was doing the same
I did find that if I got tense, dad got tense - so I learned to keep a calm front up whatever was going on, and reassured him that he was doing well/right when he did eg this meal is going down well, dad, must make it again soon; that glass of juice disappeared quickly, dad, must buy some more - I know it may sound patronising but dad did seem to like being praised and included in choices (though I quickly stopped actually offering him choices as that just confused him and led to a refusal - so I handed him whatever as though he was, of course, going to accept it)
sorry - didn't mean to go on
best wishes to you both[/QUOTE]

I have a slow cook pot but I am not the most inventive of cooks so where do you find nutritional values of foods please. I think the taste buds must be affected as she says everything is salty and I have to make sure that the temperatures are just right. My family are vegan so can't help much as they consume loads of food that have to be chewed up and take too much time to eat.

I have a slow cook pot but I am not the most inventive of cooks so where do you find nutritional values of foods please. I think the taste buds must be affected as she says everything is salty and I have to make sure that the temperatures are just right. My family are vegan so can't help much as they consume loads of food that have to be chewed up and take too much time to eat.

I have a slow cook pot but I am not the most inventive of cooks so where do you find nutritional values of foods please. I think the taste buds must be affected as she says everything is salty and I have to make sure that the temperatures are just right. My family are vegan so can't help much as they consume loads of food that have to be chewed up and take too much time to eat.

EdgsonW, post: 1501421,
Hi, It can be very stressful indeed trying to prepare food for your OH since it would appear that many with this condition appear to change their previous needs, wants, likes and dislikes.

Good nutrition is a goal we would all love to achieve, but sometimes too it is a case of giving them food you know they can eat. My OH used to eat anything and I could be as creative as I wanted but now my creativity has been sorely tested to the limit since any meat that requires chewing is pushed to the side, usually after he has asked if this is donkey meat.

If you want to check on nutritional values, try entering those words in the 'search engine of your computer'. You should get the Nutritional Pyramid which shows the breakdown of foods and their proportions which can be a useful guide. However, maybe you are giving yourself a hard time.

Perhaps the best you can do is to try to include meat or fish, and vegetables with something starchy like potatoes or rice, followed by fruit and yogurt or stewed fruit and custard. Fresh fruit chopped up into jelly is tasty and easy to eat.

But at the end of the day, if they eat at all then it is a bonus. That is why 3-4 times a week I serve homemade soup which I have blended - blending hides a multitude of contents and is easy for him to eat - no chewing. Because the soups have meat and veg or pulses and veg then they are fairly nutritionally balanced. I usually follow the soup with a very small dinner as too much food on the plate overwhelms him.

At the moment I am down to about 5-6 dinner choices that I know he enjoys. Sausages cooked slowly in onion gravy with potatoes and mixed vegetables (about as exciting as cold rice pudding) but he eats and enjoys and eats the lot. Likewise with steakburgers - same treatment. Roast Chicken dinner. Homemade chicken and leak pies (or pile chopped cooked chicken, peas, mushrooms into a white sauce and serve with vegetables. Cooked bacon joint and vegetables. Fish in batter and chips.

Curry, I can no longer make the curries I used to as according to himself they are 'very messy' -yep nature of the beast. So I chop onions, carrots, parsnips up small cook them down in the curry sauce and then blend. I then pour the curry sauce onto chicken strips or prawns and serve with rice...avoiding the messy look but again providing him something that is tasty and that he can easily eat.

Yes tmy OH tends to eat 'rubbish' with relish - sweets or chocolates, doughnuts and the latest craze is the Irish Cream drink.... probably about a bottle a week ...but at this stage I am not going to worry unduly.

Guess what I am saying is you have enough stress to cope with, try not to let food be one more. Keep it simple and yes if like me you have to come down to a very limited choice, then so be it... My OH is getting food, there is a reasonable variety, he eats the meals without trouble so we are all happy....at the moment at least.
Hope it works out well for you.
Mx

 

[AL60]

If I had dementia or any other incurable illness, I would like others to let me do what makes me happy, no matter how bad it is for my health.
What would happen if you let your husband drink as much as he likes?

Hi. I often wonder if it was me who had dementia, would I know? My wife certainly thinks she's fine. It's a nightmare. Al.

 

[carolynp]

Hi. I often wonder if it was me who had dementia, would I know? My wife certainly thinks she's fine. It's a nightmare. Al.

Yes @AL60 this question is so scary. I believe it’s one of the reasons why the carer’s role is so harsh and confronting. The self- questioning never ceases.
After a step down before Xmas, my OH seems at last to have levelled off again. There have been moments of humour and flashes of his old self, some lasting for hours. So there I am with a recurrence of the question that used to plague me in the years before diagnosis: Am I imagining all this? All in my head, of course ... but with us, what isn’t?!

 

[margherita]

Hi. I often wonder if it was me who had dementia, would I know? My wife certainly thinks she's fine. It's a nightmare. Al.

In my opinion, at the early stages of dementia the awareness of one's condition depends on the attitude to reality the person had before falling ill.
I have never tried to see life through rose tinted spectacles. I think reality, as bad as it may be, is the only base I can build my life on.
My husband had a sort of selective view of reality also when he was not ill. He preferred not to see what was disturbing to him..and, anyway, anything unpleasant might have happened, it was always someone else's fault.

 

[Mornish]

Hi
My husband does not have a diagnosis but so many of the difficulties I read here ring true with him though maybe not as bad in some cases.
On top of his memory problems, difficulties with concentration and organisation he has regular outbursts of anger, usually caused by me asking him something or saying something he doesn't like. During these he becomes very tearful and accuses me of not caring, showing no sympathy, not helping and not loving him. I now know the format they take. I choose to walk away which he doesn't like and on more recent occasions have left the house for a while in order to diffuse the situation. It doesn't always work! I don't think he understands how much it hurts and upsets me. The next day is absolutely fine and you would never believe the difference.
I was also interested in the food issues. I'm having similar problems though again not as bad as some. He doesn't like anything new. Things we've had numerous times taste different, doesn't believe its the same. Finds it difficult to eat a lot of things I used to produce partly due to lack of teeth but also lack of perseverance! Generally he prefers pre prepared meals or those we have delivered by a private delivery service. I have to confess I get bored with the same stuff but life's too short. Memory clinic next month for fourth time, though he thinks its only second! See what happens this time!

Hi Yorkie 46
My sympathy for.you, my husband is just the same.with the outbursts but not the food issues. I'm not sure if you are in the uk? If you are, do get a diagnosis....And apply for attendance allowance. Also a rebate for council tax due to having a severe mental impairment.
Hope this helps
Mornish.

 

[yorkie46]

Hi Mornish
Thanks for your comments. I've just received a major setback in my efforts to get a diagnosis. We had a memory clinic appointment just over a week ago, we saw a nurse who did all the usual tests. Of course he couldn't make a diagnosis, he had to discuss with the consultant. I took a phone call next day to say they wanted my husband to increase his antidepressants. He wasn't happy but eventually agreed, in his head these tablets were only to help him sleep. He didn't tolerate the higher dose so I phoned back and was told to reduce again! Yesterday I took a call from the consultant. He wanted to ask me about my concerns and what areas of his difficulties worried me, I had sent him a lot of written information. He told me my husband does not have a dementia or depression but he doesn't know what is causing his difficulties and recognised I hadn't been happy with previous contact with memory clinic. This absolutely stunned me because he has never met my husband, how can he make all these decisions based on testing done by someone else and telephone conversation!! He says he's going to arrange a CT scan and a Spect scan but I feel this is just to placate me because I'd been extremely angry that we had been discharged three times before yet the problems continue and increase. I was beside myself last night with anger and disappointment. There has to be a reason for all these problems. When I told my husband about the scans he said why, its just my age! He's 82 and fluctuates between 'I'm an old man' and 'I'm quite good for my age'. I'm going to speak to the GP again because I'm so confused.

 

[dancer12]

Hi. I often wonder if it was me who had dementia, would I know? My wife certainly thinks she's fine. It's a nightmare. Al.

Hi:

I'm going to see if I can find a 2 for 1 deal.

 

[dancer12]

Hi Mornish
Thanks for your comments. I've just received a major setback in my efforts to get a diagnosis. We had a memory clinic appointment just over a week ago, we saw a nurse who did all the usual tests. Of course he couldn't make a diagnosis, he had to discuss with the consultant. I took a phone call next day to say they wanted my husband to increase his antidepressants. He wasn't happy but eventually agreed, in his head these tablets were only to help him sleep. He didn't tolerate the higher dose so I phoned back and was told to reduce again! Yesterday I took a call from the consultant. He wanted to ask me about my concerns and what areas of his difficulties worried me, I had sent him a lot of written information. He told me my husband does not have a dementia or depression but he doesn't know what is causing his difficulties and recognised I hadn't been happy with previous contact with memory clinic. This absolutely stunned me because he has never met my husband, how can he make all these decisions based on testing done by someone else and telephone conversation!! He says he's going to arrange a CT scan and a Spect scan but I feel this is just to placate me because I'd been extremely angry that we had been discharged three times before yet the problems continue and increase. I was beside myself last night with anger and disappointment. There has to be a reason for all these problems. When I told my husband about the scans he said why, its just my age! He's 82 and fluctuates between 'I'm an old man' and 'I'm quite good for my age'. I'm going to speak to the GP again because I'm so confused.

Hi Yorkie46:

Too many chiefs, not enough Indians. No offense intended.

 

[yorkie46]

Hi dancer12
I tend to agree but I also feel its a dreadful failure in the system. Sadly older peoples mental health services seems to be very patchy even within the same city. I know of other people who have attended different memory clinic in a different part of the city who have had a very different experience and outcomes. I have never been happy with the one we have to attend because of the way they work. I have never had an opportunity to speak to a member of this team on my own other than by telephone which I don't feel is the best way of being able to explain concerns properly. I know that at a different clinic this opportunity is offered and carers are given a questionnaire to complete. I don't understand why all these provisions do not work in the same way.

 

[dancer12]

Hi dancer12
I tend to agree but I also feel its a dreadful failure in the system. Sadly older peoples mental health services seems to be very patchy even within the same city. I know of other people who have attended different memory clinic in a different part of the city who have had a very different experience and outcomes. I have never been happy with the one we have to attend because of the way they work. I have never had an opportunity to speak to a member of this team on my own other than by telephone which I don't feel is the best way of being able to explain concerns properly. I know that at a different clinic this opportunity is offered and carers are given a questionnaire to complete. I don't understand why all these provisions do not work in the same way.

Hi Yorkie46:

Yes I agree they do treat older people differently. When my husband went to Memory Clinic they had us fill out forms before we went there, saw us both separately and then together with other junior doctor present. She (psychiatrist) sent a thorough letter to his neurologist and also to his doctor. But many don't go to these lengths. Unfortuneately they just write old people off or prescribe unnecessary medication which makes them confused. There is no follow-up & rely to much on the caregiver to contact them if something is wrong. Oftentimes we don't know & the patient is too confused and we (carers) don't understand them. Can you not ask to see a different Memory Clinic or is that the only one in your area? The doctors that perform the tests do make a difference on the results.

They (Memory Clinics) don't work the same way because different doctors have different bedside manners and different feelings about older people. A shame really.

 

[yorkie46]

Hi dancer12
I'm so pleased you confirm what I say about the patchiness of services. Unfortunately this is the only clinic we seem to be able to attend for our part of the city, we live in Southampton. I know there is definitely another clinic in the other part of the city and I've been told by people I know that they work differently. I've looked again at the signs of vascular dementia and I still maintain that my husband has so many of these I don't understand why they won't make a diagnosis. The more I think about it the more angry and upset I become. I've been struggling with this since his heart surgery in 2010. I have always maintained that a large amount of damage was done at this time by the difficulties they had maintaining his oxygen levels in the post op period. He has gone progressively downhill since then. Following the surgery he has never been able to manage his own medication. He also has high blood pressure and type 2 diabetes, all these make him predisposed to vascular dementia. I know I'm not an expert in mental disorders in older people but I am an expert in my husband! That is something nobody else can be. I feel so exasperated. the trouble is its always the carers who are left to pick up the pieces!

 

[carolynp]

D

Hi dancer12
I'm so pleased you confirm what I say about the patchiness of services. Unfortunately this is the only clinic we seem to be able to attend for our part of the city, we live in Southampton. I know there is definitely another clinic in the other part of the city and I've been told by people I know that they work differently. I've looked again at the signs of vascular dementia and I still maintain that my husband has so many of these I don't understand why they won't make a diagnosis. The more I think about it the more angry and upset I become. I've been struggling with this since his heart surgery in 2010. I have always maintained that a large amount of damage was done at this time by the difficulties they had maintaining his oxygen levels in the post op period. He has gone progressively downhill since then. Following the surgery he has never been able to manage his own medication. He also has high blood pressure and type 2 diabetes, all these make him predisposed to vascular dementia. I know I'm not an expert in mental disorders in older people but I am an expert in my husband! That is something nobody else can be. I feel so exasperated. the trouble is its always the carers who are left to pick up the pieces!

Dear Yorkie46 I have started so many messages to you in my head! But really there’s nothing I can contribute that would be any help except to say that you are actually sounding a little more on top of things under the most trying circumstances imaginable. And I’m thinking of you. Carolyn.

 

[dancer12]

Hi dancer12
I'm so pleased you confirm what I say about the patchiness of services. Unfortunately this is the only clinic we seem to be able to attend for our part of the city, we live in Southampton. I know there is definitely another clinic in the other part of the city and I've been told by people I know that they work differently. I've looked again at the signs of vascular dementia and I still maintain that my husband has so many of these I don't understand why they won't make a diagnosis. The more I think about it the more angry and upset I become. I've been struggling with this since his heart surgery in 2010. I have always maintained that a large amount of damage was done at this time by the difficulties they had maintaining his oxygen levels in the post op period. He has gone progressively downhill since then. Following the surgery he has never been able to manage his own medication. He also has high blood pressure and type 2 diabetes, all these make him predisposed to vascular dementia. I know I'm not an expert in mental disorders in older people but I am an expert in my husband! That is something nobody else can be. I feel so exasperated. the trouble is its always the carers who are left to pick up the pieces!

Hi Yorkie46:

I live in Canada so it's a bit different. I'm finding that doctors that take care of their parents seem to be more compassionate than those that don't. My husband was diagnosed with FTD @5 years ago. He was only 63 when diagnosed, now he is in the middle stage and he seems to be getting angrier & angrier all the time. I put in so much effort choosing a day program for him with younger adults and now he says he won't go, there's nothing wrong with him, it's everybody else. He can't seem to find the correct words and it is so frustrating at times.

Anyway thanks for listening or reading. Much appreciated. I hope you find the answers you are looking for pertaining to your husband, a compassionate doctor and a Memory Clinic that fits both your needs. Don't give up & keep asking questions. Like you said you know your husband better than anybody.

 

[AL60]

Hi. Another post, another late night, another blank screen, another year older and still no wiser. Went out together today to buy a birthday card, on arriving home she happily handed over the card, still in the cellophane, then wished me happy birthday. It was hard not to smile as I wrote the card to myself. Thinking of the changes since my last birthday until now I couldn't help but think what changes my next birthday will bring. It really doesn't do to think too much about it. I'm off to bed now, no plans for tomorrow, just going to see what happens. I think she's finally tired of national trust shops now, just after renewing membership, I'm sure it's just a temporary blip. I really am off to bed now, it's nearly tomorrow so for now goodnight, Al(62) .

 

[margherita]

Happy birthday, Al.
I wish you strength, patience, and a bit of freedom

 

[PalSal]

Happy birthday, Al.
I wish you strength, patience, and a bit of freedom

Hi. Another post, another late night, another blank screen, another year older and still no wiser. Went out together today to buy a birthday card, on arriving home she happily handed over the card, still in the cellophane, then wished me happy birthday. It was hard not to smile as I wrote the card to myself. Thinking of the changes since my last birthday until now I couldn't help but think what changes my next birthday will bring. It really doesn't do to think too much about it. I'm off to bed now, no plans for tomorrow, just going to see what happens. I think she's finally tired of national trust shops now, just after renewing membership, I'm sure it's just a temporary blip. I really am off to bed now, it's nearly tomorrow so for now goodnight, Al(62) .

Happy Birthday Al, you sound pretty down.

My birthday was March 17th and my wedding anniversary was March 4th. I do not expect anything and I do not buy myself a card. My one sister in law remembered my wedding anniversary which was sweet...but there is nothing to celebrate any more. I went to my daughters for pizza on the night of my birthday (there was a big snow here) and I went to Geneva on Sunday to meet my cousin from Texas. We spent the night at a good hotel on the lake, did a little siteseeing and ate two great meals. Then took the train home late on Monday. I do my best to find things to do and enjoy. And I do not project into what my life will be like in the future. For today I must try to find the good things wherever and whenever possible. The projection into next year is too scary, I pray to stay in today. Hope you are getting out more these days now that you have someone to come in for a few hours each week.

 

[Amethyst59]

Sorry we missed your Birthday, Al. All good wishes for yesterday! (We missed yours too, @PalSal, Happy Birthday to you, nice to see you here again x ). Thankfully Birthdays are not so important as we get older. Mine this year, was right up there with the year my late husband had just died. In fact, I think this years was worse. Hey Ho, we move on!
I hope National Teust regains your wife’s interest...the weather is at last getting better! Mind you, our two for one card arrived...and I cannot see us using it. I think a day at a NT property might be too much for Martin now.