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It’s all so strange

Pots and Pans

Registered User
Jan 13, 2020
249
0
If you find that button, please post details! Not flippant all🤪.

And at the moment, he is not showing any signs of reversing so I am enjoying it for as long as it lasts. He asked about five times today what the date was and because he is being so nice, it didn’t bother me a bit. It is much easier to be patient with him while he is in his present frame of mind.

Wouldn’t it be nice if the PET scan showed a little button I could press to keep him as he is?
If you find that button, please post details! I am sure I would not be alone in wanting to try such a reset ....😀😀
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
Stranger and stranger as we continue in our present phase.

Everything has stayed the same and life is still being pleasant. I haven’t been able to find out why yet but he is playing much less bridge and is still being cooperative and helpful.

I have had to put the brakes on the money as he has not only bought me some lovely Christmas gifts but has ordered a gorgeous little something to put away for my birthday (April).

I admit that I wondered for a while if he thought he was dying but yesterday, he started making plans for what I might like for Christmas 2022. So he seems to be quite happy to be thinking about the future so I think I got that wrong.

A few months ago, I had a ring of his repaired, costly but it was such a beautiful thing and he hadn’t worn it for years. It needed a diamond replacing and a major repair to the gold setting. It sat in my room since I collected it but because he was being so challenging that I couldn’t bring myself to give it to him. I know longer had any reason to keep it so I gave it to him this morning and he was quite overwhelmed.

How I wish I knew where all this was going.
 

canary

Registered User
Feb 25, 2014
18,195
0
South coast
It does seem very strange, doesnt it?
I think we are all baffled. I guess its best not to try and look too far ahead and just enjoy what you have, although I realise that that is difficult when you are constantly on edge wondering when it will all change again.
 

Cedaroflebannon

Registered User
Sep 6, 2020
51
0
So glad you’re having a good spell with your OH. Similarly my OH has turned from Alpha male to “boy like” - helping with chores (rarely experienced in 45 years of marriage!) and making sure I am “pleased“ with him. I think at some level they know that without us they would not be able to manage. I too am making the best of this phase and for me I can cope better with all the questions if he is doing small tasks to help me. I try and laugh each day about something with him bu t of course there are also days when I feel desperate and the hypersexuality is very challenging but that’s another story! May there be opportunity for you to say the important things to each other and family whilst this “window” is still open and get the legal stuff done if needed. Very best wishes.
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
It does seem very strange, doesnt it?
I think we are all baffled. I guess its best not to try and look too far ahead and just enjoy what you have, although I realise that that is difficult when you are constantly on edge wondering when it will all change again.
Actually, I am not feeling too much on edge about it. I think I am resigned to the fact that it’s not going to stay this way and honestly, I feel the best I have felt for ages. I am refusing to be stressed and life is so much easier. I will take it for what it is and enjoy it.
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
So glad you’re having a good spell with your OH. Similarly my OH has turned from Alpha male to “boy like” - helping with chores (rarely experienced in 45 years of marriage!) and making sure I am “pleased“ with him. I think at some level they know that without us they would not be able to manage. I too am making the best of this phase and for me I can cope better with all the questions if he is doing small tasks to help me. I try and laugh each day about something with him bu t of course there are also days when I feel desperate and the hypersexuality is very challenging but that’s another story! May there be opportunity for you to say the important things to each other and family whilst this “window” is still open and get the legal stuff done if needed. Very best wishes.
My husband was just plain paranoid and it’s that aspect that has been the most dramatic change. I guess it will return one day but it was interesting to read your post about your husband being so helpful.

Maybe my husband has realised that life is much easier for him when he cooperates. This big change did come after a he had a huge hissy fit that lasted weeks. We haven’t had a bad day since all this started and I find it easy to go with the flow at the moment.
 

Suesue.G.

Registered User
Aug 9, 2020
62
0
I have been reading this thread, this morning, nodding like one of those "nodding dogs" people had in their cars. My OH has always been the Alpha male in our marriage and has often been very difficult to live with. Quick tempered and sometimes very paranoid. Since he has been diagnosed with Vascular Dementia/Alzheimers/Parkinsons, he has been completely different! His mobility and cognitive skills worsen by the day and I am more a carer than a wife, but, he has found an hilarious sense of humour , eventho his spee h is barely coherent. He giggles at the situations we find ourselves in and tries to cooperate as much as he is able. He has, occasional, flashbacks to his old confrontational self, telling me to F. Off and being unpleasant, and, I react as I used to by leaving the room and avoiding him for a couple of hours. When I return he looks confused and hurt and has no recollection of his outbirst. So when people say to me, O it must be so hard for you to look after him, I have to admit, that sometimes, it is much easier and we actually laugh more than we ever did. I wonder if the sweet personality, he now presents, is the real him that was buried derp inside for all those years.
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
I have been reading this thread, this morning, nodding like one of those "nodding dogs" people had in their cars. My OH has always been the Alpha male in our marriage and has often been very difficult to live with. Quick tempered and sometimes very paranoid. Since he has been diagnosed with Vascular Dementia/Alzheimers/Parkinsons, he has been completely different! His mobility and cognitive skills worsen by the day and I am more a carer than a wife, but, he has found an hilarious sense of humour , eventho his spee h is barely coherent. He giggles at the situations we find ourselves in and tries to cooperate as much as he is able. He has, occasional, flashbacks to his old confrontational self, telling me to F. Off and being unpleasant, and, I react as I used to by leaving the room and avoiding him for a couple of hours. When I return he looks confused and hurt and has no recollection of his outbirst. So when people say to me, O it must be so hard for you to look after him, I have to admit, that sometimes, it is much easier and we actually laugh more than we ever did. I wonder if the sweet personality, he now presents, is the real him that was buried derp inside for all those years.
I can honestly say that my husband was never an alpha male type. Before symptoms of dementia appeared, he was amiable and easy to get along with and had a quirky sense of humour. He was very stubborn as am I and we had to find our way through it. Three years prior to his diagnosis, that man started to disappear and at times, the paranoia was very difficult to cope with and was quite destructive.

So when this switch came along a few weeks ago, I saw a lot of his former self surfacing and though his cognitive functioning is still on a slow downward slide, life has certainly been much nicer. We too have had some laughs and certainly it has been pleasant to spend time together again.

I am sure that there are those on TP who are struggling a lot more than we are now. And that’s something to be grateful for.
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
Just a little update and I am really pleased that OH is continuing to be his old pleasant self. We are going to the consultant on Tuesday for his PET scan results and today we had our third COVID shot which was a relief though a bit of a marathon to get it organised.

We got a letter from the government last week telling us that we were due for our boosters in January then they promptly announced that we should get them NOW and that Australia is swimming vaccine so no problem. Humpffff! I immediately phoned our GP but they were all booked up as were all our local pharmacies. Tried booking online without success so tried phoning the government vaccination hub only to be told to hold on as there was high demand. Gave up! But my daughter said she had hers at a clinic across town so I called them and got an appointment for this morning.

So it’s now three weeks to my daughter’s wedding which is the fifth attempt but COVID may be interfering again. Her partner’s parents are well into their eighties and his dad is in hospital with COVID and his mum is positive and at home alone. His dad has been unwell with bleeding ulcers and failing kidneys for some time and his mum has never been on her own this long ever so totally miserable. They have both been double vaccinated.

So we have to wait and see what happens with them and that will dictate what happens with the wedding. I would have to assume that they won’t be able to join us for Christmas and of course with the dad’s health issues he may be in hospital for some time or indeed it could even prove fatal.

Obviously I am concerned about everyone’s welfare but as it is all totally beyond my control, I am determined to enjoy our present situation as it could all go into reverse tomorrow. OH is still making plans, about where we might go for lunch, is there anything he can do for me and he has an idea of what he might buy me for Christmas in 2022. It is amazing how relaxed I am. Fingers crossed that we make it through this way till after Christma.
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
Yesterday was such a beautiful day, we went to a nearby beach and had a lovely walk along the beach and followed up with lunch. He asked me what I had ordered and when I said a slice of quiche, he asked what it was, and I explained that it was an egg tart. I was surprised by the question because I buy them for him quite often. He said he had never heard of them.

He got lost after going to the toilet and I could tell by the look on his face that he was very relieved to see me.

This morning we saw the consultant about the results of the PET scan. He compared the results with those that OH had done in 2014 and whatever showed up then is no longer present. Even though the neuropsychological tests done on two different sessions three years apart revealed significant deficits and the conclusion was both times that OH had some form of Alzheimer’s, the consultant has now said that he is to be considered as undiagnosed.

He is to stop using the rivastigamine patches and see what happens. So we are now none the wiser but he is very happy with the news.

I asked the consultant about how this would affect my carer’s allowance and he said that with my husband’s heart condition and other problems, he wouldn’t tell Centrelink that the situation had changed. Nothing is different really. I still have a husband who has demonstrated incredible mood swings, and has some considerable cognitive deficits as well as health issues.

So I go on as usual. make no plans, and have no expectations, except to be disappointed sometimes but enjoy things when they are good and cross my bridges when and if I get to them.
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
Im glad that the consultant isnt going to change anything.
You must feel so confused.
xxx
Yes I do feel confused, partly because I didn’t think that one PET scan could negate seven years of my husband’s history and the in depth testing done at the memory clinic.

But then, I always understood that they really didn’t have any idea of what was going on and I guess the time has come to say undiagnosed rather than that haven’t had a clue for years.

This all came from the consultant but our GP believes that there is some sort of mixed dementia taking into account the cardiac arrest.

The consultant talked around issues such as he been going downhill so slowly and stable and then the one that really ran up flags for me that much of what he was seeing could be aging. Episodes of raging paranoia, total obsession about a game, loss of memory of thirty years of his life - none of it adds up to simple aging.
 

canary

Registered User
Feb 25, 2014
18,195
0
South coast
The consultant talked around issues such as he been going downhill so slowly and stable and then the one that really ran up flags for me that much of what he was seeing could be aging. Episodes of raging paranoia, total obsession about a game, loss of memory of thirty years of his life - none of it adds up to simple aging.
I had OHs consultant saying exactly the same to me - and OH was only in his early 60s.
He too was saying that OH was deteriorating so slowly and everything seemed stable, (plus the scans were normal) so it couldnt be dementia.

OH has no memory of his early life either. His obsession is his android tablet - he spends all day sitting on the sofa scrolling through it. He is losing ability to do tasks right left and centre, but he can still work his tablet. When he dropped it and it broke, I thought the end of the world had arrived! He too got episodes of raging anger and accusations, although these have now mostly passed, which is bittersweet because it has left a sort of emptiness.

Undiagnosed is tough
xxx
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
I had OHs consultant saying exactly the same to me - and OH was only in his early 60s.
He too was saying that OH was deteriorating so slowly and everything seemed stable, (plus the scans were normal) so it couldnt be dementia.

OH has no memory of his early life either. His obsession is his android tablet - he spends all day sitting on the sofa scrolling through it. He is losing ability to do tasks right left and centre, but he can still work his tablet. When he dropped it and it broke, I thought the end of the world had arrived! He too got episodes of raging anger and accusations, although these have now mostly passed, which is bittersweet because it has left a sort of emptiness.

Undiagnosed is tough
xxx
I think it is a whole lot tougher for you than me though. This isn’t going to change our lives at all and our financial benefits will continue as will the little bit of care we get.

My husband was diagnosed in July 2014 and after all this time I know this is more than ageing as you know with your husband. So maybe it’s not Alzheimer’s but he certainly ticks all the boxes for some form of dementia.

We live in regional Victoria and with COVID it is not easy to get a second opinion and for us probably not worth the effort. I know what you have been through trying to get answers. OH wouldn’t be cooperative and right at this very moment while he is being so nice, I would have to think twice about rocking that particular boat.

There have been times in the past when it would have been wonderful to have had some respite. He would have resisted it but now it is no longer really going to be an option. And right now, I don’t need it but then we have no idea of what the future will bring. With his heart failure, maybe the gods will be kind and give him a peaceful end without the need to go into care.

The one great blessing we have is that our GP and the clinic are very supportive. While our GP was away recently, I saw a younger doctor, new to the practice but who I suspect has had some personal experience with AD and that is nice to know.

I hope that Christmas is a peaceful time for you and that somehow you find the strength to continue with your commitmen.
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
I have been reading so many posts today about people’s struggles at Christmas and remember how awful those celebrations were in the last few years for us too.

But we had a lovely day at my daughter’s home, not only with my family but with her partner’s family too. His parents are both recovering from COVID and couldn’t come but the weather was lovely so we spent much of the day outside in the garden, watching our dinner being cooked on the spit.

Three dogs came to visit my daughter’s dog so we were entertained by their play as they frolicked around everybody, playing fetch or chasing each other in the shrubbery. Bit of a happy madhouse really.

My husband continues to be in a great place, got dressed up and made the effort to mix with everybody. After a couple of glasses of wine with lunch, he had a little snooze in an armchair, sleeping through all the chaos of two little children opening lots of presents.

I am still confused by the events of recent weeks but just taking it all on board for as long as it lasts.
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
This morning I had an appointment with my GP and as always he was happy to listen and have a little side chat about my husband’s health.

I told him everything that had gone on and he said that he too couldn’t understand why the sudden and dramatic change in OH’s behaviour. He also said that the geriatrician had sent a report that said in his opinion the behavioural and cognitive problems were caused by brain damage that occurred at the time of my husband’s cardiac arrest.

Unfortunately, that doesn’t explain why I had sought an assessment for my husband prior to the cardiac arrest. He had been displaying severe paranoia for three years prior so none of it adds up and that makes feel more than a little grumpy. I hate it when someone lies to me and thinks I am so dumb I will go along with it.

But OH is still being so nice and I will take that one any day. We haven’t had a cross word since the switch in his personality.
 

canary

Registered User
Feb 25, 2014
18,195
0
South coast
I understand your confusion and frustration, but I have no advice or wise words for you. Im just glad that your GP will listen to you.
xx
 

Lawson58

Registered User
Aug 1, 2014
2,797
0
Victoria, Australia
I understand your confusion and frustration, but I have no advice or wise words for you. Im just glad that your GP will listen to you.
xx
Thank you.

I feel that we have been let down very badly, that just perhaps further investigation was warranted. Not dementia according to the geriatrician and I KNOW that this all started before the cardiac arrest so for me the brain damage diagnosis doesn’t cut it.

I have been considering whether or not we should get a second opinion as friends have suggested but even though a part of me is screaming that I should, I have decided not to go down that road. Firstly, we live in a regional town and the only other geriatrician is the next door office to the one we have been seeing all these years and if nothing is to be achieved, then not worth the discomfort.

Secondly, OH has always said that he didn’t want any more of the memory testing and I understand that.

Thirdly, his cardiac condition is slowly worsening so I can’t see any point in it all really.

We went out for lunch today at a nice little restaurant on the waterfront. We were supposed to go on Monday but he forgot (!!!) and had an early snack at home because he was hungry.