sicut animam suam : 'it's just life'

[Sarasa]

@Palerider, If you have concerns about any information other people have posted or have suffered any abuse from other posters use the Report button at the bottom of each post. That way the post will come to the quick attention of a moderator.

I too appreciate your posts and your in depth knowledge of things medical relating to dementia, and I'd miss you if you didn't post.

 

[canary]

Simon, I value your posts and your reservoir of knowledge and would be sorry if you left
I have hesitated in posting, though, in case I am one of the ones that you have an issue with. I know that I am a pretty prolific poster, can be quite a maverick at times and although my mum certainly had Alzheimers and I went the whole journey with her right up to the end, my OH has no diagnosis, so sometimes I feel I dont belong here either. I post from prior knowledge and stuff I have learned along the way (Ive learned a lot about various neurological disorders lol!) and only google stuff to check spelling etc, or try and find helpful links and try and make plain that stuff I post is my own opinion, so I hope I am not spreading disinformation.

 

[northumbrian_k]

There is no substitute for lived experience and that is what @Palerider and so many others bring to DTP. That is what makes it a special resource like no other. Just my opinion but one I feel sure that others share.

 

[Bikerbeth]

I have not been on here for a while but saw your post. Whatever you decide to do and whether you remain on here or not I just wanted to say Thank You.
Sharing your journey with your Mum (along with 2 others who used to post on here) really helped my understanding and knowledge. In someways you gave me strength and made me a better Carer than I otherwise would have been. Your writing made me smile and at other times I had tears in my eyes.
Thank you

 

[Palerider]

@Palerider . I’m sorry but I don’t quite understand your post.
In the time I have been on TP I have never felt that anyone was trying to peddle misinformation.
I have always found it to be very helpful and supportive and certainly never thought that anyone was trying to force their own theories upon me.

Hello @CAL Y

You probably won't get to see many inappropriate posts on TP becuase the moderators are a very effective team at taking them down PDQ -thankfully.

There is a very very small minority -and I mean very small, minute even who post often what I would describe as misinformation. I feel that its important to remember that there are very few places for PWD and also their carers to turn for help and support, TP is one of those places that shines a light often for whom many are just passing through, and some of us stay here for a while. Not everyone has the luxury of large family support networks or groups of friends to seek help from, so they turn to TP. On that basis how we respond is important in order to be of help rather than confound someones situation.

Or put another way there is what we know we don't know and there is also what we don't know what we don't know, misinformation comes from responding but not knowing what we don't know and not bothering to keep ourselves in check. No one is perfect, myself included, but having that insight is I would say a benefit in adding to the content of TP.

 

[Palerider]

@canary and @Bikerbeth

Thanks for the replies, and to say I have been grateful for all of the words you write on TP -certainly supported me over what has been a very difficult three years -from crisis point till now.

We all do our best, so lets move on and I still need my TP friends ?

 

[Sarasa]

That is so good to hear @Palerider, we need you too.

 

[Palerider]

Anyway this week has been doubly hard as the care home mum is paying for sent a very late letter which of course I reacted to -the rest of the world now has fairly limited qaurantine measures but mums care home still holds out 14 days from the last infection recorded -so now we are into over one month of no visiting for what is now deemed less risk for those vaccinated -mums care home are all vaccineted twice and bossted but clearly that does not count and for that matter I am also double vaccinated and boosted so I am not quite sure now who is saying what is entirely useful accurate or constructive. There is one problem post Francis report and more recently executive officers of care facilities are now (but not before Francis) culpable for any harm whether that be NHS or care homes...ironically since this new law got passed we now have to appeal to people that only have one concern and that is to protect themselves regardless of the instituional harm our loved ones have to suffer. Ther is no balance or reasonable compromise in what has become essentially a very difficult legal minefield to navigate. I hope in the future that these complex and unintegrated laws will be combined into one single and useul and reproachable law because otherwise we the ordinary public have no right of redress no matter the harm we feel is being done.

 

[Palerider]

On the top of my shelving in my living room lives a wooden box, in it are many photographs and keepsakes my gran left me when she passed. There is one postcard from the 1940's of the Rock of Ages and on the back written in my grans hand is 'me, Jean, Phyllis and Lucy' -mum never forgot the trip they took to see the Rock of Ages nor the music. I miss the memory sharing and what makes me who I am.

Mum is now described as a miracle resident to which I agree with increasing heart failure, blindness from bilateral cataracts and the reduced function of her walking ability she continues to wander round and round the unit. Visiting is still not open as covid continues to be problematic, and I wonder if will ever get the chance again to see my mum before its too late. I guess many of us are in the same boat lately.

Interview for the new post is in two weeks -a bold step and we shall see what comes if successful.

A golden oldie for many of mums generation and those before:

 

[Palerider]

Today I have started to contemplate its time to move closer to my work. I feel terrible when I think of it as it means kind of leaving mum behind, but sooner or later I have to make the decision as the commute after 6 years is beginning to take its toll -seems daft I know, but its just how I feel.

 

[Baker17]

On the top of my shelving in my living room lives a wooden box, in it are many photographs and keepsakes my gran left me when she passed. There is one postcard from the 1940's of the Rock of Ages and on the back written in my grans hand is 'me, Jean, Phyllis and Lucy' -mum never forgot the trip they took to see the Rock of Ages nor the music. I miss the memory sharing and what makes me who I am.

Mum is now described as a miracle resident to which I agree with increasing heart failure, blindness from bilateral cataracts and the reduced function of her walking ability she continues to wander round and round the unit. Visiting is still not open as covid continues to be problematic, and I wonder if will ever get the chance again to see my mum before its too late. I guess many of us are in the same boat lately.

Interview for the new post is in two weeks -a bold step and we shall see what comes if successful.

A golden oldie for many of mums generation and those before:

Can I ask why are not an ECG for your mum? Even though there are continuing covid issues where my PWD is I can still visit as often as I like, I just make an appointment and can can stay as long as I like x

 

[JanBWiltshire]

Can I ask why are not an ECG for your mum? Even though there are continuing covid issues where my PWD is I can still visit as often as I like, I just make an appointment and can can stay as long as I like x

If the home is like the one my mother is in, it is because no one thought to mention ECG. It is a scandal on a massive scale and there is a FB group called Roghts for Residents set up to raise awareness of this travesty. You can request to visit as an ECG even when a home is locked down awareness of this needs to be enhanced as it is like the best kept secret at the moment.

 

[Baker17]

If the home is like the one my mother is in, it is because no one thought to mention ECG. It is a scandal on a massive scale and there is a FB group called Roghts for Residents set up to raise awareness of this travesty. You can request to visit as an ECG even when a home is locked down awareness of this needs to be enhanced as it is like the best kept secret at the moment.

@JanBWiltshire Yes that’s where I first heard about ECG, I’ve been a member of rights for residents since it was set up. In my case I didn’t have to ask they just said I was an ECG, my PWD is at a Barchester home.

 

[Palerider]

Can I ask why are not an ECG for your mum? Even though there are continuing covid issues where my PWD is I can still visit as often as I like, I just make an appointment and can can stay as long as I like x

Hello @Baker17

Mums care home have been very reluctant to give ECG status and to be frank I had given up asking. But I also had to balance that with where mum is and the fact that she is in a better place than many in other care homes -so we become subdued into acceptance of the situation. The residents on mums unit have never been confined to their rooms throughout the pandemic as it would be inhumane and also impossible to do that and the care home had realised this plus many other aspects of care that in other situations in other homes have been contentious.

Sometimes we just have to accept the situation for what it is and realise it could all be much worse.

 

[Palerider]

Another week and now it's almost February, time seems to be slipping by quicker than ever, though I am glad as this weekend is payday ? -its been 6 weeks since the last one.

Anyway I have got feedback on my PhD proposal and thumbs up a strong proposal so now having finally brought it up to a polished standard onto the next stage and hopefully some funding.

I am finally going to get see mum on Monday and again on Thursday next week after having missed her birthday and Christmas, not that the times of the year matter that much anymore, just being able to see her and know myself she is ok is what matters. I have been shopping as always for the usual toiletries but also two new tops, one of which is another Peanuts theme with Snoopy and Woodstock and some new bedding with bees on -I know she will like it if she can see the bees on it. Of course its a moment of dread after not seeing her for so long there will be more noticable change but there is nothing I can do.

Next week is the job interview, it will be part-time split between what i do now, but hoping I get through the interview.

In the meantime the last two weeks have been hell at work so today is glass of fizzy Italian wine -or two and do absolutely nothing day, oh apart from music??

 

[Palerider]

Few people these days know the Cremmond, I used to play it and sing it in its original melody as taught by my gran, and she knew every word of the psalm which it is. I am a humanist and costantly find myself bouncing between different styles and meanings of music and also the words if sung. I think the cremmond is a wonderful set of words which describes our life meaning in what we will be our own eternity, but me being me here is my fave version on a day that sparked some very vivid memories of my life gone by by some very special people:

 

[Palerider]

Last but not least a tune that was very close to my mum and dads heart as a couple, I find it hard to share this becuase of the emotions they both felt with this song. Mum and dads original version was by Jimmy Young, but here is a version they both shared as a constant melody between them from young love to later life, it was played at my dads funeral and to my mum this tune means everything even in her dementia -I can no longer play it to her because she gets so upset -illicit memory is a powerful thing, but this is what is left:

 

[Palerider]

I recently switched energy suppliers and got a shock this weekend with an estimated bill of £1017.00. I can't enter up to date readings to correct it and have paid this now, does anyone know how to sort this out as I can't seem to match my usage with their estimated bill??

 

[Moggymad]

Last but not least a tune that was very close to my mum and dads heart as a couple, I find it hard to share this becuase of the emotions they both felt with this song. Mum and dads original version was by Jimmy Young, but here is a version they both shared as a constant melody between them from young love to later life, it was played at my dads funeral and to my mum this tune means everything even in her dementia -I can no longer play it to her because she gets so upset -illicit memory is a powerful thing, but this is what is left:

It’s wonderful. I do love hearing bagpipes. One year when on holiday in Ilfracombe a man was playing the bagpipes standing on the cliff edge across the bay & it resonated around the whole area. I’ve loved the sound since then.

 

[chapwoman]

Hi, sorry to hear about your health problems’
There was a lady on 24 hours in A @E tonight who also had heart problems caused by anxiety. It was initially thought the lady had a heart attack. I dont think people realise how severely things can affect the body.
Hope you recover fully soon.

I look after my 80 year old mother who has dementia. She is a bloody nightmare but then she was a nightmare before she had dementia!
I was recently taken into hospital with what seemed like psychosis. However it has now been found to have been a mini stroke caused probably by severe stress. I am trying to be kinder to myself but it definitely doesn't come easy to me. Guilt is my middle name and I never feel like I'm doing enough. Sadly the people around me never make me feel like I'm doing enough even though I give everything I have to keep everyone happy. My mum lives with my dad who is really struggling with all the psychological changes. I take mum out every day and try to give dad a break but it's never enough. I sort out their appointments, medication, etc, etc. I was living with them and have had to temporarily move out but will be going back soon. During the time I have been away ( approx 2 months ) my father has suddenly started treating me with respect whereas before he took me so much for granted. I think my emergency hospital visit has shaken him into realising that I am not invincible. Hopefully when I get back to living with them he will be kinder to me.