Trying to appreciate good days

[Manc70]

Well today has been better than the rotten day we had yesterday. I feel a change in my husband though which is making me worried and oh so sad for him. I was incredibly sad before but I can almost not bare to see my lovely confident, intelligent husband look so scared that he may have done something wrong or said the wrong thing but is not sure what it is. Hope I’m not talking double Dutch. At the moment he is really interested in the garden which is a good thing and can strangely remember all the plans he has talked about In previous days and that we need to buy bird food and greenfly spray etc but can’t remember to make a sandwich while I visited our daughter today for a few hours, even though I left everything for him to put it together. I’m thinking that perhaps he can’t now figure out how.
Sorry for going on and when I read what some of you lovely people have to go through, my life sounds quite tame, but it helps to get my thoughts down and in some kind of order.

 

[FitMomma66]

Hi, I’m new to this and strangely nervous about what to write. I feel as though I am betraying my husband’s trust writing about him. Hi is having a nap and I was sat thinking what a lovely few days we have had and wishing I could just enjoy them without having a dread in my stomach about how quickly it can and often does change. I am getting better at, and feel as though I am learning all the time, how to keep things ‘sweet’. It’s like walking on eggshells sometimes when saying the wrong thing, however helpful you think you are being, can end up with a bad mood, shouting and then no talking. I know it’s his frustration at not being able to work things out. My husband is 70 and fairly newly diagnosed although I can pinpoint at least three years ago noticing a difference in him. LB has been mentioned but we are back at the neurologist on Monday and I dread but also want to know if they have a conclusion yet. I’m hoping for another good day tomorrow, plan to garden, take the dog a walk etc.

Hello! Yes, I often feel the same way. We just had a wonderful weekend, with my daughter in for a visit from out of town. She is a nursing student and so helpful and my husband. She knows how to talk to him, gives him time to respond, etc. He seemed to really enjoy her visit, we played lawn games, weather was great..... A few hours after she left, his delusions kicked in, and it was horrible. There is no reasoning with him or rationalizing. I try many things to calm him, or reassure him. I know it will pass and I try to focus on the wonderful time we were having earlier, but it is hard. I hope you have many more pleasant days. Making memories! I will continue to do the same! : )

 

[kindred]

Well today has been better than the rotten day we had yesterday. I feel a change in my husband though which is making me worried and oh so sad for him. I was incredibly sad before but I can almost not bare to see my lovely confident, intelligent husband look so scared that he may have done something wrong or said the wrong thing but is not sure what it is. Hope I’m not talking double Dutch. At the moment he is really interested in the garden which is a good thing and can strangely remember all the plans he has talked about In previous days and that we need to buy bird food and greenfly spray etc but can’t remember to make a sandwich while I visited our daughter today for a few hours, even though I left everything for him to put it together. I’m thinking that perhaps he can’t now figure out how.
Sorry for going on and when I read what some of you lovely people have to go through, my life sounds quite tame, but it helps to get my thoughts down and in some kind of order.

So good to read your posts, thank you. Just wanted to say that the first couple of years after my husband was diagnosed were full of wonderful times, it was like we were students together again. We would huddle in caffs doing little puzzle books together, and word searches etc. He lost ability to do noughts and crosses very early on, but other puzzles we could manage. He became very loving again in what he said, like I said it was like we were 18 again. Days can be good. Gxxaka kindred.

 

[Manc70]

Hello! Yes, I often feel the same way. We just had a wonderful weekend, with my daughter in for a visit from out of town. She is a nursing student and so helpful and my husband. She knows how to talk to him, gives him time to respond, etc. He seemed to really enjoy her visit, we played lawn games, weather was great..... A few hours after she left, his delusions kicked in, and it was horrible. There is no reasoning with him or rationalizing. I try many things to calm him, or reassure him. I know it will pass and I try to focus on the wonderful time we were having earlier, but it is hard. I hope you have many more pleasant days. Making memories! I will continue to do the same! : )

Hello there, I’m so pleased you had such a lovely weekend but rotten for you that it ended as it did. Don’t you just want to bottle the good times and figure out a way to carry it on and on. There have been times he has seemed so “back to normal” that I’ve thought it’s all a mistake and then wham! It all changes and you’re not sure if there was a trigger you can avoid next time.
I love that you have your wonderful weekend memories and also wish you many more. Take care.

 

[FitMomma66]

Hello there, I’m so pleased you had such a lovely weekend but rotten for you that it ended as it did. Don’t you just want to bottle the good times and figure out a way to carry it on and on. There have been times he has seemed so “back to normal” that I’ve thought it’s all a mistake and then wham! It all changes and you’re not sure if there was a trigger you can avoid next time.
I love that you have your wonderful weekend memories and also wish you many more. Take care.

Yes, thank you! Rarely does he even look like the person I first met. But the other day, he leaned across the couch, looked at me, and gave me a kiss. He seemed so "back to normal" for a moment. Makes me wonder where he is most of the time, and why he comes back for a few seconds.

 

[Manc70]

So good to read your posts, thank you. Just wanted to say that the first couple of years after my husband was diagnosed were full of wonderful times, it was like we were students together again. We would huddle in caffs doing little puzzle books together, and word searches etc. He lost ability to do noughts and crosses very early on, but other puzzles we could manage. He became very loving again in what he said, like I said it was like we were 18 again. Days can be good. Gxxaka kindred.

Thank you so much for your comments. I feel quite emotional at being able to relate to so many of the posts. You write so wonderfully about your relationship and I can see a bit of that with us. On good days my OH can be so thoughtful and loving also especially in the things he says, compliments galore.... Ashamed to say I felt a bit crowded by him at first. We were always close but we both had jobs, him sometimes working away, then suddenly he wanted to be with me all the time (his confidence was going) and I felt I couldn’t turn round without him being there and I felt I wanted a bit of space. Now I try and appreciate every time he is like that as I’m learning how quickly things change and I crave for him to be loving the times when he can be quite cold.

 

[Manc70]

Yes, thank you! Rarely does he even look like the person I first met. But the other day, he leaned across the couch, looked at me, and gave me a kiss. He seemed so "back to normal" for a moment. Makes me wonder where he is most of the time, and why he comes back for a few seconds.

That is so touching, i hope you don’t mind if I share with you that I shed a tear

 

[Grahamstown]

All these posts ring bells for me, the feelings of guilt and the endless yo-yoing of mood memory and fatigue, together with almost back to before happy times. I think that TP is our writing therapy instead of talking therapy, and I do believe that it is a safe space without betraying my dear husband. If I hadn’t had the help from the other members, I think I would cope much worse than I do, and I don’t find it easy now. It is asking a selflessness from me that I find hard to give. I can do all the physical caring but the psychological is more difficult. We all press on regardless with hugs from me.

 

[FitMomma66]

That is so touching, i hope you don’t mind if I share with you that I shed a tear

Thank you!

 

[Grahamstown]

Well today has been better than the rotten day we had yesterday. I feel a change in my husband though which is making me worried and oh so sad for him. I was incredibly sad before but I can almost not bare to see my lovely confident, intelligent husband look so scared that he may have done something wrong or said the wrong thing but is not sure what it is. Hope I’m not talking double Dutch. At the moment he is really interested in the garden which is a good thing and can strangely remember all the plans he has talked about In previous days and that we need to buy bird food and greenfly spray etc but can’t remember to make a sandwich while I visited our daughter today for a few hours, even though I left everything for him to put it together. I’m thinking that perhaps he can’t now figure out how.
Sorry for going on and when I read what some of you lovely people have to go through, my life sounds quite tame, but it helps to get my thoughts down and in some kind of order.

I have just seen your post and just wanted to say that it is exactly what TP is for, getting your thoughts down and making sense of them. I too feel that I have little to bear compared to some other members but it is what we experience that matters to us however ‘tame’ it may seem, it is simply horrible at whatever stage we are at and our internet friends on here keep us sane. What we would do without them doesn’t bear thinking about and how fortunate we are to live in the age of the internet.

 

[Manc70]

I have just seen your post and just wanted to say that it is exactly what TP is for, getting your thoughts down and making sense of them. I too feel that I have little to bear compared to some other members but it is what we experience that matters to us however ‘tame’ it may seem, it is simply horrible at whatever stage we are at and our internet friends on here keep us sane. What we would do without them doesn’t bear thinking about and how fortunate we are to live in the age of the internet.

Thank you, you are so right of course and it’s amazing to get such understanding just when you think you are alone and feel no one would fully understand what we are going through.

 

[Grahamstown]

My husband has been more than usually confused and forgetful yesterday and today, and I wonder if the hot weather has anything to do with it. I was very despondent this morning and wondered who I could talk to but immediately realised that this is where TP functions because I always feel better when I have got out my frustration. There good moments too like enjoying last night x

 

[Manc70]

After a few fairly good days and feeling quite positive about coping with things (well ok, a little bit positive, with great effort!) I took the bull by the horns and, encouraged by friends we are going with, I booked a holiday in September. It’s in the Scilly Isles and a long journey but I’ve booked a half way hotel, and feeling pleased with myself over the plans, holiday insurance sorted (I was dreading my OH’s list of ailments) etc and then wham! Just a few days later and he is having such a bad day I’m starting to stress that it will all be ok. He is having what I can only describe as episodes (4 so far today) of feeling off balance, feeling strange in the head, headache, tight band round his head, fatigue etc etc. that can last just a few minutes or sometimes longer and then having no memory of anything having happening even half an hour later but feeling drained of energy. I feel so so sorry for him. These episodes have been ongoing every now and then for a few years and tests came up with possible epilepsy which they blamed his failing memory on at first, and he is on medication. After more tests including an MRI and psychological ones he was diagnosed with Alzheimer’s.

I know the holiday is a gamble, it could be great or an absolute disaster and I’m feeling very cowardly at the moment. I admire lots of the posts I read where you carry on with holidays. I’m not even sure what it is that I am worried will happen, just the unknown I suppose but I do want to go on making memories while we can.

We do go on short breaks not more than an hour away from home but I had thought I may even stop going on those. I so want to go on this holiday, it’s only 6 days. Maybe I’m just tired and tomorrow I’ll feel positive again, hope so. x

 

[Manc70]

Hi again, my husband has just got up after a 2 hour sleep feeling fine and has said he is going out to cut the hedge, involving an electric cutter and a ladder, before we watch football. I won’t repeat what I said but it involved choice language I didn’t even realise I knew! I just visualised A&E and fingers in ice and missing the game. Hey ho! Come on England........

 

[Grahamstown]

After a few fairly good days and feeling quite positive about coping with things (well ok, a little bit positive, with great effort!) I took the bull by the horns and, encouraged by friends we are going with, I booked a holiday in September. It’s in the Scilly Isles and a long journey but I’ve booked a half way hotel, and feeling pleased with myself over the plans, holiday insurance sorted (I was dreading my OH’s list of ailments) etc and then wham! Just a few days later and he is having such a bad day I’m starting to stress that it will all be ok. He is having what I can only describe as episodes (4 so far today) of feeling off balance, feeling strange in the head, headache, tight band round his head, fatigue etc etc. that can last just a few minutes or sometimes longer and then having no memory of anything having happening even half an hour later but feeling drained of energy. I feel so so sorry for him. These episodes have been ongoing every now and then for a few years and tests came up with possible epilepsy which they blamed his failing memory on at first, and he is on medication. After more tests including an MRI and psychological ones he was diagnosed with Alzheimer’s.

I know the holiday is a gamble, it could be great or an absolute disaster and I’m feeling very cowardly at the moment. I admire lots of the posts I read where you carry on with holidays. I’m not even sure what it is that I am worried will happen, just the unknown I suppose but I do want to go on making memories while we can.

We do go on short breaks not more than an hour away from home but I had thought I may even stop going on those. I so want to go on this holiday, it’s only 6 days. Maybe I’m just tired and tomorrow I’ll feel positive again, hope so. x

My husband has the same diagnosis and has also had some fainting episodes. I have been taking my him on both short breaks and one two week cruise in May. I organised the insurance and it was not a problem with his diagnosis. I had to cancel one short break in Devon before I got the insurance because he had just had an episode of collapsing and hospital, but I have persevered with the others. We are going again next week for another cruise because it did him a lot of good and he is enthusiastic which is encouraging, even though he can’t remember what the arrangements are from one day to the next. I have had the same problems away as at home but think that I might as well struggle in a nice place as battle on at home. At least away he has something to interest him and he can rest as much as he wants, and he wants to rest a lot, and it’s good for me too. But I wouldn’t minimise the effort required, I just have to be very vigilant. He is on donepezil now and I think it has helped a bit. I feel that I must go now because who knows what may happen. So I would encourage you to keep going unless it is obviously wrong, and I do hope you have your holiday.

 

[member74974]

Just seen @Grahamstown last post. How did I miss it?

 

[Manc70]

I’ve just read this whole thread for the first time, @Manc70. I agree so much with your description of the good and bad days. And how hot weather can make it worse. And the putting on a good front when with other people and being exhausted afterwards. Both my OH and I appreciate the good days so much. Mustn’t waste the good days worrying about what’s coming! And a dog does help. They understand our moods and try to comfort us. And walking them calms one down (or calms me down anyway). I took previous dogs into residential homes, as a Therapy Dog, and they were wonderful with my mother-in-law when she had dementia.

Hi, how fabulous you have used therapy dogs, I always think how important they can be. Our little dog is amazing and has saved my sanity so many times and my OH loves him being on his lap enjoying lots of cuddles. I am trying hard with taking the days as they come and enjoying good days. Yesterday we actually sat and talked about what is wrong with him and he said he accepts it and knows we will get through it together. We are hopefully going to sign on to a Memory Walk if we can find one where the place and date suit us. I don’t want to add a ‘downer’ so I will leave it there. X

 

[member74974]

Glad your little dog helps you and your OH. Our (very big dog) certainly helps us both. I’ll have to look up what a memory walk is.

 

[Manc70]

Glad your little dog helps you and your OH. Our (very big dog) certainly helps us both. I’ll have to look up what a memory walk is.

Hi, I saw the Memory Walks advertised through Alzheimer’s UK and also on TV. Walks of different distances and venues around the country. You can put your post code in on their website to find the nearest ones to you and they look good fun and of course raise money. The grandkids are hopefully doing it with us and hope for lots of sponsors.

 

[Manc70]

Had to share a lovely funny moment - they don’t often happen. We are just watching Traffic Cops on Channel 5, the police put a drug dealer in the back of one of their vans and my OH burst out laughing. When I asked why he said there was a Dementia Friendly sticker at the bottom of the van door so he reckons he will be ok if he ever gets arrested!!