And so it goes on...

[jenniferjean]

@Grahamstown @canary You can understand how outsiders are unable to realise just how things are and believe that we are exaggerating. @Grahamstown 's husband would have come across as perfectly normal on that phone call. As you say, it will be interesting when his friend arrives.

 

[Grahamstown]

How right you are @jenniferjean he really did sound quite on the ball on the phone. Today he says again that he hasn’t spoken to his friend for ages. I sent a message to his son and got a lucid reply saying that he thought it was totally crazy for his father trying to visit and that he will call him. It was wonderful to get a rational response in this world we live in. TP to the rescue again helping to sort out your thoughts when your brain gets scrambled.

 

[canary]

Lets hope the friend agrees and calls it off.

 

[Gladys1946]

I'm new to this Forum but it's so comforting to see other people going through what we are. My husband was diagnosed three weeks ago with Alzheimer's even though my daughter(a GP)and i knew it probably was. Today he's depressed and hardly spoken to me. It's very hard. I feel I've lost the man I married 50:years ago. Initial Consultant was useless and kept saying he was just anxious. After my daughter insisted he had a scan, the result showed Alzheimer's. Having no confidence in this consultant we've just seen another who was fantastic and was so wonderful to my husband. He also put him on Donepezil. Husband thinks this will cure him. We haven't told him otherwise. No point. As you say, and so it goes on.

 

[Shedrech]

hello @Gladys1946
just to say, a warm welcome to TP
I'm glad the new consultant has left you feeling more positive.
Do start a thread of your own whenever you have anything on your mind; it's often reassuring to share, as you say

 

[Grahamstown]

I'm new to this Forum but it's so comforting to see other people going through what we are. My husband was diagnosed three weeks ago with Alzheimer's even though my daughter(a GP)and i knew it probably was. Today he's depressed and hardly spoken to me. It's very hard. I feel I've lost the man I married 50:years ago. Initial Consultant was useless and kept saying he was just anxious. After my daughter insisted he had a scan, the result showed Alzheimer's. Having no confidence in this consultant we've just seen another who was fantastic and was so wonderful to my husband. He also put him on Donepezil. Husband thinks this will cure him. We haven't told him otherwise. No point. As you say, and so it goes on.

I feel for you and like you we have been married 54 years on Tuesday. He won’t remember but I cannot worry about that because I have lost something more important, him. I had a moment today when I remembered my loving husband. He is not the same man just a pale imitation with glimpses of the clever man he was. Talking point is a great source of support and informatio and I hope you find it so.

 

[jenniferjean]

I feel for you and like you we have been married 54 years on Tuesday. He won’t remember but I cannot worry about that because I have lost something more important, him.

We will have been married 50 years on March 29th. My husband knows the date and of course it is mentioned on the news constantly because of brexit. Every time it's mention he asks me how many years have we been married.

 

[Grahamstown]

I am having to be very firm/bossy with him these days over daily things like eating as well as the usual showering and changing clothes, so I always seem to be telling him what to do, put water in kettle, teabag in mug, pour water into mug, fetch mug, drink tea/coffee etc. It sounds completely crazy but even if I get him everything which I do a lot of the time, he needs reminding to drink or eat. He would never stir from his chair if I didn’t encourage him to do small things and I never seem to be nice to him because I am having to regulating his behaviour. It’s certainly getting worse. His forced heavy breathing is non stop these days and I have resorted to headphones to block out the sound which is relentless. He can’t help it but it’s still annoying to listen to all the time. Actually I think he gets on my nerves with everything these days. It’s all the traits of the disease which are so difficult to live with. He has been sleeping late recently and on his bed in the afternoons, going to bed earlier and earlier. The other thing is that when decisions have to be taken and administrative jobs done there is no one to talk to about it. The old easy way discussing and supporting each other has gone forever, difficult to come to terms with. Up to recently I could prattle away and he seemed to understand but that is fading.

 

[Maryland]

I am having to be very firm/bossy with him these days over daily things like eating as well as the usual showering and changing clothes, so I always seem to be telling him what to do, put water in kettle, teabag in mug, pour water into mug, fetch mug, drink tea/coffee etc. It sounds completely crazy but even if I get him everything which I do a lot of the time, he needs reminding to drink or eat. He would never stir from his chair if I didn’t encourage him to do small things and I never seem to be nice to him because I am having to regulating his behaviour. It’s certainly getting worse. His forced heavy breathing is non stop these days and I have resorted to headphones to block out the sound which is relentless. He can’t help it but it’s still annoying to listen to all the time. Actually I think he gets on my nerves with everything these days. It’s all the traits of the disease which are so difficult to live with. He has been sleeping late recently and on his bed in the afternoons, going to bed earlier and earlier. The other thing is that when decisions have to be taken and administrative jobs done there is no one to talk to about it. The old easy way discussing and supporting each other has gone forever, difficult to come to terms with. Up to recently I could prattle away and he seemed to understand but that is fading.

Hi grahamstown - when I read what kind of day you had, it sounded just like me. You are not alone.. I feel as though I am always arguing but he just forgets what I said a couple of minutes later. I like you do all the admin and the household jobs !! It you ever need a rant just drop me a note - it does you good to get it off your chest. The problem won’t go away but the frustration may for a while. You take care x

 

[Banabarama]

I am having to be very firm/bossy with him these days over daily things like eating as well as the usual showering and changing clothes, so I always seem to be telling him what to do, put water in kettle, teabag in mug, pour water into mug, fetch mug, drink tea/coffee etc. It sounds completely crazy but even if I get him everything which I do a lot of the time, he needs reminding to drink or eat. He would never stir from his chair if I didn’t encourage him to do small things and I never seem to be nice to him because I am having to regulating his behaviour. It’s certainly getting worse. His forced heavy breathing is non stop these days and I have resorted to headphones to block out the sound which is relentless. He can’t help it but it’s still annoying to listen to all the time. Actually I think he gets on my nerves with everything these days. It’s all the traits of the disease which are so difficult to live with. He has been sleeping late recently and on his bed in the afternoons, going to bed earlier and earlier. The other thing is that when decisions have to be taken and administrative jobs done there is no one to talk to about it. The old easy way discussing and supporting each other has gone forever, difficult to come to terms with. Up to recently I could prattle away and he seemed to understand but that is fading.

This resonates with me also. I feel bossy and OH said the other day that I treat him like a medieval servant! This is the instruction giving. Sometimes he doesn’t know how to get to another room, how to sit on a chair, how to find the food on his plate. Certainly can’t easily get trousers on, socks on. Shoes are a nightmare. Other days (fewer days) things not so bad. I guess the wires in the brain are less jumbled on some days. Evenings are by far the worst. The things he says are surreal. What he is seeing and experiencing is completely different from what I am seeing and experiencing. It’s as if we are living on two separate planes with an occasional, vague overlap. By about 11 o’clock I am exhausted and then have to face the dreaded bedtime routine of undressing, medication, eye drops, etc. Forget washing - it ain’t going to happen! The sense of relief when I get to my room! I just hope and pray I’m not going to heAr my name called ...

 

[jenniferjean]

This resonates with me also. I feel bossy and OH said the other day that I treat him like a medieval servant! This is the instruction giving. Sometimes he doesn’t know how to get to another room, how to sit on a chair, how to find the food on his plate. Certainly can’t easily get trousers on, socks on. Shoes are a nightmare. Other days (fewer days) things not so bad. I guess the wires in the brain are less jumbled on some days. Evenings are by far the worst. The things he says are surreal. What he is seeing and experiencing is completely different from what I am seeing and experiencing. It’s as if we are living on two separate planes with an occasional, vague overlap. By about 11 o’clock I am exhausted and then have to face the dreaded bedtime routine of undressing, medication, eye drops, etc. Forget washing - it ain’t going to happen! The sense of relief when I get to my room! I just hope and pray I’m not going to heAr my name called ...

Yes, same here. The shoes aren't a problem anymore thank goodness as I bought him velcro ones. But with everything else I feel like a school teacher most of the time, just issuing instructions. Simple things like "go and get your jumper, it's in the bedroom" and he looks at me as if to say where is the bedroom.
There's times when I wish I could disappear into my own bedroom but we only have the one. But I'm still counting my blessings.

 

[Grahamstown]

It is amazing and comforting to hear that you @Maryland @Banabarama and @jenniferjean feel the same way, when I felt that only I could be so unpleasant to a man I have loved for over 55 years. I find that I am ‘behaving badly’ towards him, caused by a normal functioning adult becoming like a child, and a child who cannot learn but actually regresses, forgetting more and more about everyday things such as which cupboard the cereals are kept in and you know that it is not going to stick when you show him something that was automatic a month or two ago. I am taking him out for lunch for our anniversary today, but it hardly registered when he opened the card from his sister, he said nothing. It’s a beautiful day so a drive into the country will be enjoyable. I have had a busy morning with electricians to fix the light and packing away my online shop, which I have started using more this winter because he is no longer good shopping.

P.S. He slept through the whole lot and has only just got up!

 

[canary]

Last year when we went out for lunch to celebrate my birthday OH had no idea and when we were coming home he thanked me for treating him

 

[Grahamstown]

Last year when we went out for lunch to celebrate my birthday OH had no idea and when we were coming home he thanked me for treating him

Yes it’s hard when these anniversaries come around and pass them by. He has declined so far and fast in one year, last year we went out for lunch and he knew what he was doing, it’s scary but I adapt as best I can I am trying to be kinder and it is heart breaking because he is so sweet, it’s easier to be cross, how awful is that?

 

[Grannie G]

I am trying to be kinder and it is heart breaking because he is so sweet, it’s easier to be cross, how awful is that?

We all know the right way to behave @Grahamstown. We also know it`s so much easier said than done.

When I think back to some of my reactions I cringe.

 

[AliceA]

I think it is a matter of survival, our survival of being able to continue to care. I suppose too, it depends on our personality whether we are quick or slow to react. How tired we are, whether we still expect certain things or realise the past is the past. Sometimes we can think we have a handle on a situation but fall apart when some small thing catches us out. As always it is the small things that trips us. It is not easy whatever the scenario.

I went to the hospital for what I thought was biopsies and a check. I was wrong the consultant decided on a treatment, this meant I was ill and he anxious, I had to dig deep. I was not as patient, I felt woozy and tired.
We do have to plan when we can and be kind to ourselves when we have too.
On a better day, I do try to soften instructions the royal 'we' comes in handy! I ask if he will do something for me, he can still make coffee and tea even though remembering to drink is another issue. The host comes into play.
I put ideas in his head such as saying it said it will rain, I think I will put my red waterproof on, do you want your long or short? All this takes so much effort, fine when I go into a lower gear and feel well.
I fail when it slips my mind that one instruction or idea at a time. It is tough isn't it, but for me it would be tougher without him. This is what helps me cope.

 

[Grahamstown]

the consultant decided on a treatment,

I am worried about you and hope you are bearing up with not too many bad consequences. For us carers to be ill is our greatest worry. Your words are beautiful and true.

 

[AliceA]

You have enough to be worried about, but thank you. It has been a rough few days since Friday. The session was long, the consultant insists on sedative, because it all took longer I had a second dose. I do not do well on opiates, heaven know why some take for pleasure. I am on a Halo research programme. The word Halo amuses me at least.
So I was not as patient with my husband but tried to reassure, anything else would not have helped. One night I warned a daughter just in case. This worried my husband as he walked in when I was on the phone.
Thinking it was a routine check I accepted an appointment for my husband on Monday so it all compounded the situation. What are we to do? I was not so ill I could not cope at all.
Next session is in three months on our wedding anniversary! I shall rearrange that.

Re. Forgetting where things are in cupboards, I do encourage a few clearing up jobs in the kitchen to get some movement in. So when I cook I often have to hunt for the dish or utensil but it is Catch 22. He needs to do something.
It is the day club tomorrow so four hours respite. I am just hoping I do not spend too much time of getting a volunteer car for the dentist on Friday. They seem very short of drivers. Fingers crossed.

You take care, do not burn out.

 

[Maryland]

It is amazing and comforting to hear that you @Maryland @Banabarama and @jenniferjean feel the same way, when I felt that only I could be so unpleasant to a man I have loved for over 55 years. I find that I am ‘behaving badly’ towards him, caused by a normal functioning adult becoming like a child, and a child who cannot learn but actually regresses, forgetting more and more about everyday things such as which cupboard the cereals are kept in and you know that it is not going to stick when you show him something that was automatic a month or two ago. I am taking him out for lunch for our anniversary today, but it hardly registered when he opened the card from his sister, he said nothing. It’s a beautiful day so a drive into the country will be enjoyable. I have had a busy morning with electricians to fix the light and packing away my online shop, which I have started using more this winter because he is no longer good shopping.

P.S. He slept through the whole lot and has only just got up!

Hi grahamstown you sound as though you had a day like me. I got up this morning with vertigo but had to do meals and I had an online shop as well which would have been left on th kitchen floor. He now looking for the tv to watch a football match !! Hope you had a good anniversary meal. It’s our sons birthday today but he is now living in the States but feel a bit better as I have just spoken to him . His dad not interested that it’s his birthday, take care tomorrow is another day. Xx

 

[Grahamstown]

It’s been a strange day @Maryland , but finally he had his breakfast and I managed to get us off at 12.30. It was busy at the restaurant but we had a good meal, then a short walk in the gardens before coming home when he went back to bed. No recollection of our anniversary but knew when I jogged his memory and said had I really been looking after him for 54 years, very touching. I have managed to find a solution to the problem of constantly wanting to go to bed every ad break when I fast forward through the ads, I just left them to run and he was absorbed by them, took them quite seriously and I really don’t think he always knew what they were. A simple solution to an annoying habit, usually up and down half a dozen times saying goodnight and then returning. I don’t know why I decided to try that, because I much prefer to fast forward. I also had a lovely chat with my daughter who is so supportive even though it’s hard for her too. A better day than I expected after an odd morning.