My Memory Pot and other moments.

[Grahamstown]

Thank you guys, Pauline is probably at Stage3/4 so not too bad and as I say really looking forward to the cruise, which is on a small ship, The Magellan, a ship recommended to us. I have upgraded to an Ocean View room so that she doesn't get claustrophobic and will bear all your words in Mind and feeling a little less nervous knowing others seem to have done it before but each can be so different with this pestilence.

I have written about my cruising experience on another thread but I have just seen your post. We did 4 cruises up until March but by May he wasn’t able to go because he had gone downhill again, so he went for respite and I went alone. On the cruise in March I didn’t leave him alone on the ship because he would go looking for me and hadn’t a clue where he was or what our cabin number was much less find it. The staff are good and I always told the cabin steward so that he was aware and watch out if necessary. Ashore we did the hop on hop off buses often right near the port, but didn’t get off, very successful. It’s a mixed pleasure but since the food, accommodation and general pleasure of cruising are good, it is worth it because you are in the same boat (forgive pun) at home.

 

[Agzy]

Good morning @Agzy

It seems I have a similar hearing loss to you. My husband was given a sensor which could be worn as a bracelet or clipped to his waistband and was connected to my care line. If he fell it would trigger the alarm.

It didn`t work for us because he `found` it and played with it but is there the slimmest chance it would work for your wife.

I have one to be worn by her as a lanyard and bought for when she is in the shower but she absolutely refuses to have anything to do with it as, she says, it marks her as disabled! If she could see what I can see.......

 

[Agzy]

I have written about my cruising experience on another thread but I have just seen your post. We did 4 cruises up until March but by May he wasn’t able to go because he had gone downhill again, so he went for respite and I went alone. On the cruise in March I didn’t leave him alone on the ship because he would go looking for me and hadn’t a clue where he was or what our cabin number was much less find it. The staff are good and I always told the cabin steward so that he was aware and watch out if necessary. Ashore we did the hop on hop off buses often right near the port, but didn’t get off, very successful. It’s a mixed pleasure but since the food, accommodation and general pleasure of cruising are good, it is worth it because you are in the same boat (forgive pun) at home.

Thank you @Grahamstown, I am really looking forward to the cruise as I had given up hope of doing another and, as for the pun - it is what I am looking forward to, food, accommodation, entertainment as well as Iceland and the Faro Isles themselves.

 

[Grannie G]

it marks her as disabled!

Do you think she might wear it if you told her you are the one who is disabled and it would give you peace of mind to know you could hear if she fell.

I always used the excuse , my hearing, my poor vision, my bad back etc.etc. and most times my husband agreed.

 

[northumbrian_k]

I don't have a single long-running thread @Agzy but the many posts that I have made since joining Dementia Talking Point chart in a roughly sequential way my experience of my wife's struggles with dementia. I read advice on the forum about starting some kind of journal or diary and started doing so in April 2017 with the objective of making a record:

"as far as I can remember it of my wife's journey into and through Alzheimer’s disease as seen by me as her partner, lover and carer. It records significant events and feelings from my perspective and attempts to show how this has affected me as an individual and us as a couple. It cannot hope to capture all of the daily challenges that we have faced together nor give any insight into how this terrible disease feels from her point of view."

I looked retrospectively for signs of the onset of dementia and found them as far back as 2010, 6 years before diagnosis.

My journal has grown to a ridiculous 63,000+ words. At one point, frustrated with the lack of empathy and understanding shown by my wife's son, I shared part of it with him. I doubt if he ever read any of it. But members of DTP have, as some of my posts are taken from - or have found a place in - my journal.

Who is it for? Just me, of course. Like any piece of work or academic study I have ever completed, it is destined to become "proud words on a dusty shelf", never read and eventually forgotten about and thrown away.

 

[Agzy]

Do you think she might wear it if you told her you are the one who is disabled and it would give you peace of mind to know you could hear if she fell.

I always used the excuse , my hearing, my poor vision, my bad back etc.etc. and most times my husband agreed.

Be tried that @Grannie G but she just laughs and says that I am not disabled but there again she has been as dismissive of my hearing loss as her sons have been about her diagnosis. I am advised that instead of the pendant type I should go for a make were the button is on a wrist watch type strap and looks like a nice faceless wristwatch and am researching it now, thank you.

 

[Agzy]

I don't have a single long-running thread @Agzy but the many posts that I have made since joining Dementia Talking Point chart in a roughly sequential way my experience of my wife's struggles with dementia. I read advice on the forum about starting some kind of journal or diary and started doing so in April 2017 with the objective of making a record:

"as far as I can remember it of my wife's journey into and through Alzheimer’s disease as seen by me as her partner, lover and carer. It records significant events and feelings from my perspective and attempts to show how this has affected me as an individual and us as a couple. It cannot hope to capture all of the daily challenges that we have faced together nor give any insight into how this terrible disease feels from her point of view."

I looked retrospectively for signs of the onset of dementia and found them as far back as 2010, 6 years before diagnosis.

My journal has grown to a ridiculous 63,000+ words. At one point, frustrated with the lack of empathy and understanding shown by my wife's son, I shared part of it with him. I doubt if he ever read any of it. But members of DTP have, as some of my posts are taken from - or have found a place in - my journal.

Who is it for? Just me, of course. Like any piece of work or academic study I have ever completed, it is destined to become "proud words on a dusty shelf", never read and eventually forgotten about and thrown away.

Ah, @northumbrian_k , your post could be mine in that we have both done similar things and I am 6 months into my journal which I started after diagnosis but had another diary that I had started before that as I was convinced that she had Alzheimer’s at least 18 months before doctors etc got involved. I read back the first two years and as amazed what I had been through during that time. Initially I wrote a lot about how it was affecting me, my feelings and fears but I am more likely to write about her and changes including good days and bad days. I say days but now only return to it every 4/5 days or when something even out of the ordinary or extraordinary happens. In my case no one other than I have read it and only my children know of it and have not told ears as they are in denial and I can imagine the accusations they would throw my way if it went public. Our stories and all those on TP would, if collated, be equivalent to a Stephen King horror story and totally unbelievable. Sorry for rambling.

 

[Grahamstown]

@Agzy The other thing I do is use lanyards for both of us to hold the cruise card without which you cannot function on a cruise. Cheap from a stationers with a little plastic card holder. Since we both wore them, and lots of people do anyway, he had no problem wearing it. Behind the card I put a note with our names and cabin number on it because the number is not on the card for privacy reasons. I just had to make sure he had it on every morning when we got dressed.

 

[Agzy]

@Agzy The other thing I do is use lanyards for both of us to hold the cruise card without which you cannot function on a cruise. Cheap from a stationers with a little plastic card holder. Since we both wore them, and lots of people do anyway, he had no problem wearing it. Behind the card I put a note with our names and cabin number on it because the number is not on the card for privacy reasons. I just had to make sure he had it on every morning when we got dressed.

Brilliant idea and I have a number of them lying round from conferences etc I have attended what a simple solution, thank you.

 

[Agzy]

well I blew it today! This morning as usual on most Tuesdays I took her to visit her in laws, that is two sisters of her late husband. They went fine although a bit of upsetting news about a niece being evicted from property for non payment of rent that non knew was an issue. Other than that all went well me with me being told not to fuss as i guide her up and down garden steps she was calm and placid. So too with lunch back at home and then the rain really started outside. This meant us sitting here, her watching repeats on TV (Soldier Soldier right now) and me reading or doing Sudoku puzzles and little conversation. Then, out of the blue I am getting shouted at for not collecting my prescription from chemists. I tried to explain that it won’t be ready until tomorrow but her agitation and shouting just increased and I blew and just shouted straight back. It has been an hour now of sullen silence and dirty looks and atmosphere horrible. How I wish I could take it back but too late for that and feel terribly guilty. Sorry for rambling but lack of conversation is a bit wearing.

 

[nitram]

Then, out of the blue I am getting shouted at for not collecting my prescription from chemists. I tried to explain that it won’t be ready until tomorrow but her agitation and shouting just increased and I blew and just shouted straight back.

Attempting to explain is pointless, you have to employ love lies, e.g., in this case 'the last prescription was extended because of the bank holiday'.
You are agreeing that normally it would be ready but the bank holiday has changed the date.

 

[Agzy]

Daily Highlight.

Living with dementia and the weight of many years,
Means each day no matter what, there will be some tears.
A carers lot is not a happy one but the burden must be borne,
Though age and health have taken their toll, life is not too forlorn,
As each day I have my dose, of pleasure, admiration and even fun,
I open my iPad, log on to Taking Point and browse this brilliant forum.

Thank you one and all.

 

[Grahamstown]

Brilliant piece @Agzy and agree totally. I do wonder how I would have coped without it, especially in the face of ‘helpful’ suggestions from others who actually have very little knowledge of how to cope with this disease. As things get worse I find that others simply can’t cope with the idea that there is not much you can do to make things better. So TP is a dose of reality in this disturbed world.

 

[Agzy]

Brilliant piece @Agzy and agree totally. I do wonder how I would have coped without it, especially in the face of ‘helpful’ suggestions from others who actually have very little knowledge of how to cope with this disease. As things get worse I find that others simply can’t cope with the idea that there is not much you can do to make things better. So TP is a dose of reality in this disturbed world.

Thank you and couldnt agree more. Nice to see a comment by you in the magazine too.

 

[Grahamstown]

Thank you and couldnt agree more. Nice to see a comment by you in the magazine too.

I was a bit surprised by this magazine reference and then remembered being asked if they might use it. Do you know I can’t even remember what the incident was now? The power of sharing is real. That was before my respite break and I realise even more how much better I feel. I have been able to be a bit more patient too.

 

[PalSal]

I am delighted to hear you are going on a cruise. I do not want to travel anywhere with my husband. He would agree to go but it is too much for me not to have my time off and team of carers. it is really 24/7 if I take him away from home and I am not willing. So, I guess it is not him but me. Selfish but true. We thought about going to our new grandbabie's christianing on June 23 in Oslo. But it would be a stressful time for our daughter (actually my husband's daughter) lots of people big party and another language which neither of us speaks. So, after much thought we declined. She would not really have had time for us anyway, busy with the big party and all the arrangements so I suggested that she come to us when she can.
But we did go to England to see my mother in law in Feb. She is 92 and was not doing too well at the time. But we stayed with my husband's sister who did everything for us and it was relaxing. And of course, I think he enjoyed it but he immediately forgets. I think he thought his sister was his mother but I am not sure as he never calls anyone by their names Our.neuropsychriatrist recommends no grand gestures, routine routine routine. And for the most part I have complied. But I feel quite guilty when I read about all of you taking our partners and spouses on holidays and cruises. I just cannot see doing it any more.

 

[Agzy]

I was a bit surprised by this magazine reference and then remembered being asked if they might use it. Do you know I can’t even remember what the incident was now? The power of sharing is real. That was before my respite break and I realise even more how much better I feel. I have been able to be a bit more patient too.

I am delighted to hear you are going on a cruise. I do not want to travel anywhere with my husband. He would agree to go but it is too much for me not to have my time off and team of carers. it is really 24/7 if I take him away from home and I am not willing. So, I guess it is not him but me. Selfish but true. We thought about going to our new grandbabie's christianing on June 23 in Oslo. But it would be a stressful time for our daughter (actually my husband's daughter) lots of people big party and another language which neither of us speaks. So, after much thought we declined. She would not really have had time for us anyway, busy with the big party and all the arrangements so I suggested that she come to us when she can.
But we did go to England to see my mother in law in Feb. She is 92 and was not doing too well at the time. But we stayed with my husband's sister who did everything for us and it was relaxing. And of course, I think he enjoyed it but he immediately forgets. I think he thought his sister was his mother but I am not sure as he never calls anyone by their names Our.neuropsychriatrist recommends no grand gestures, routine routine routine. And for the most part I have complied. But I feel quite guilty when I read about all of you taking our partners and spouses on holidays and cruises. I just cannot see doing it any more.

@PalSal at present I am lucky in that decline is slow and Pauline still determined to be as independent as possible so she actively urges me to travel etc while I can although my guilt is a horrible thing. Although she is, in the main, antisocial now it was her idea for the Icelandic cruise as, being a small ship, she can remain on board throughout if she wishes and, as we have informed the company of Alzheimer’s issue we hope the crew will be helpful. I am mor nervous about it than she is.

 

[Grahamstown]

But I feel quite guilty when I read about all of you taking our partners and spouses on holidays and cruises. I just cannot see doing it any more.

We went on our last cruise together in March so one has to seize the moment and go when it is still possible so @Agzy and enjoy it. I too felt guilty going on a cruise without him this May but he couldn’t possibly have come. I don’t think anyone should feel guilty for being realistic about whether their partner, parent, relative is in a sufficiently good state to be able to make a holiday. My adage has always been you have to be fit to travel, and suffer any setbacks along the way. If your man was fit to fly back in February I count that as a great success because I don’t think I could take him flying any more.

 

[Agzy]

Big mistake today as I decided to wash the garden ornaments as, being white they get dirty fron the rain even though on flagstones. I answered her question about how can rain make them dirty and did it as though she would understand. Now I am a f****** idiot as rain is clearly clean and washes away muck not causes it and who am I trying to kid? Silly me tried, very patiently to explain about it and she blew. Ah well back to white lies and diplomacy school. lol.

 

[Agzy]

Have to say, this weather doesn’t help much in that I haven’t been able to go for my walks, which give me both excersize and some respite, albeit maximum time is about an hour out of the house. Neither has she been able to go on her daily bus rides to local shopping centre and back. All means added strain and blame game indoors as the smallest thing can lead to inquisitions and disagreements although no meltdowns (from either of us) up to now. So, today I break the pattern as I will drive her to the shopping centre, park myself in a cafe and wait for her to walk the circle of shops she visits every time. Anything for even a tiny escape as I am just not an indoor person.