APPROACHING END WITH MUM : EVERY DAY IS DIFFERENT

[Lindy50]

Thank You @Carmar. Just home from visiting mum. Sadly no recognition or chat today and all food has been refused. Drinks continue to be wanted. Oh, I feel very low now even though I know this is to be expected. The only positive was mum showed no distress nor signs of experiencing pain.. Strange atmosphere at the Home today. I think the changes the new Manger is putting in place have not been well received.

Though not "officially" nor intentionally a veggie, I am 95% one I think. I have just gradually wanted to eat meat less and less and If I were to be told I could never eat meat again, it would not concern me in the slightest. With Love to all xxx

ps not sure what I've touched to change the margins!​

Dear Jan @Jezzer
I'm sorry you had a sadder visit today, difficult especially when you'd had some better ones when you had such lovely communication with your mum. Glad though that there were no signs of pain, that's something to hold on to. Here's hoping That Smile returns soon xx
Re your diet, do you eat fish? I find I like it more and more lately, and it's light, and good for us! I think I'm the reverse to you at the moment, in that an interest in cooking and eating is one of the things that keeps me going. I've lived on cereal bars, boiled eggs, cheese on toast etc at various times in the past, but I know the lack of variety didn't do me any good.
I hope once you've had your transfusion you'll begin to have more of an appetite and find a diet that suits you.
Love
Lindy xx

 

[Jezzer]

Dear Jan @Jezzer
I'm sorry you had a sadder visit today, difficult especially when you'd had some better ones when you had such lovely communication with your mum. Glad though that there were no signs of pain, that's something to hold on to. Here's hoping That Smile returns soon xx
Re your diet, do you eat fish? I find I like it more and more lately, and it's light, and good for us! I think I'm the reverse to you at the moment, in that an interest in cooking and eating is one of the things that keeps me going. I've lived on cereal bars, boiled eggs, cheese on toast etc at various times in the past, but I know the lack of variety didn't do me any good.
I hope once you've had your transfusion you'll begin to have more of an appetite and find a diet that suits you.
Love
Lindy xx

Man y Thanks Lindy xxxxx

 

[Duggies-girl]

Man y Thanks Lindy xxxxx

Don't forget. Take it easy.

 

[Jezzer]

Don't forget. Take it easy.

Will do my best! Thanks so much. Take care xxx

 

[Kikki21]

@Jezzer Jan - I am so pleased you have got to the bottom of your episodes. You can become anaemic for many reasons. Get your thyroid checked out as well. A blood transfusion will help but check whether you need iron tablets or ferritin as well. You can get liquid iron for better absorption in health food stores but you will also need vitamin C too to help absorb the iron.

I had lots of investigation some years back when I had low iron & felt so much better on liquid iron within 2 weeks! I still think I have a dodgy thyroid but then so many thyroid symptoms are the same as menopause that it is hard to know what is what. I didn’t have much faith in drs then as had a job getting bloods done & seeing an endocrinologist who thdn poo pooed everything! Grrr! Xxxx

 

[Jezzer]

@Jezzer Jan - I am so pleased you have got to the bottom of your episodes. You can become anaemic for many reasons. Get your thyroid checked out as well. A blood transfusion will help but check whether you need iron tablets or ferritin as well. You can get liquid iron for better absorption in health food stores but you will also need vitamin C too to help absorb the iron.

I had lots of investigation some years back when I had low iron & felt so much better on liquid iron within 2 weeks! I still think I have a dodgy thyroid but then so many thyroid symptoms are the same as menopause that it is hard to know what is what. I didn’t have much faith in drs then as had a job getting bloods done & seeing an endocrinologist who thdn poo pooed everything! Grrr! Xxxx

Thanks Monika. The GP did say I would be on iron tablets after the transfusion. He is a good doctor but I'm afraid don't generally have much faith in them. I believe my partner would still be here today but for negligence on the part of the doctor concerned. Very hard to fight them. They join ranks and I had neither the wherewithal nor the money at that time.

 

[Jezzer]

My brother and I just home from seeing mum. Though we were treated on arrival to The Smile, it was all a bit downhill thereafter. Mum was agitated and as well as calling out her own name, was calling out to another of her late sisters which is new. She looked even frailer today and as if she'd been crying although the staff said not. As I can't visit tomorrow, I will be desperate to see her on Tuesday. Love to all J xxxx

 

[kindred]

My brother and I just home from seeing mum. Though we were treated on arrival to The Smile, it was all a bit downhill thereafter. Mum was agitated and as well as calling out her own name, was calling out to another of her late sisters which is new. She looked even frailer today and as if she'd been crying although the staff said not. As I can't visit tomorrow, I will be desperate to see her on Tuesday. Love to all J xxxx

Oh thank you for keeping us up to date. I am so glad you got the smile but this agitation is so sad, and the frailty. I know you will be desperate to see her on Tuesday darling. I do hope tomorrow goes well. All love and thoughts, Geraldinexxxx

 

[Jezzer]

Thank you. I'm getting quite anxious about it for some reason; don't really know why. Just that horrid feeling that something bad is about to happen. I've had this before and often my fears have been realised. Mum's agitation is playing on my mind. Could it be that in the fog of dementia, she senses something too? Time will tell. I'll post on TP again once tomorrow is out of the way. Thanks for all your support guys. Bye for now xxxxxx

 

[Jezzer]

@Jezzer, just wanted to say hope all goes well for you tomorrow. In my previous job, there was an elrderly resident on one of the estates I managed who used to go for regular blood transfusions due to a chronic disease (not connected with anaemia as such). She would go out to the taxi in a wheelchair, and come back a few hours later walking and as feisty and 'up and at 'em' as it was possible for her to be. I hope this will be you tomorrow after receiving your infusion of iron! xx

Ah Thank You Carmar. I hope to be up and at 'em too!! I will be in touch when I get home. I appreciate the good wishes I've had. With love to you and your dear mum J xxxxx

 

[Kikki21]

Thank you. I'm getting quite anxious about it for some reason; don't really know why. Just that horrid feeling that something bad is about to happen. I've had this before and often my fears have been realised. Mum's agitation is playing on my mind. Could it be that in the fog of dementia, she senses something too? Time will tell. I'll post on TP again once tomorrow is out of the way. Thanks for all your support guys. Bye for now xxxxxx

Bless you @Jezzer - I too have not had a satisfactory visit today so I know how that feels. I hope everything goes well for you tomorrow & Tuesday will come quickly for you xxxxxx

 

[Jezzer]

Bless you @Jezzer - I too have not had a satisfactory visit today so I know how that feels. I hope everything goes well for you tomorrow & Tuesday will come quickly for you xxxxxx

Thanks Monika. Sorry to hear you've also had a not-so-good visit. It does affect us doesn't it even though we expect it? I'll be back on TP as soon as I can. Take care xxxxxx

 

[Toony Oony]

Hi @Jezzer - me again, just popping in to send you a hug and wish you well!

I too have visited Mum this afternoon - not too bad a visit, but despite Mum having bumper visits over the weekend (me Friday, my daughter Saturday and me again today) another relative told me she was very distressed yesterday afternoon . If only she could remember the visits she's had.

Just wanted to say that when you are all 'transfused' a really good way to keep your blood good is a tonic called 'Fl*radix'. There is a specific iron one. I used to do platelet donation every couple of weeks, and the hospital looked after you like a prize specimen! A couple of times I could not donate as I was anaemic or borderline. The consultant advised me to take this stuff (it was less easily available then). When I returned the next time, the nurse in charge was amazed at how my iron levels had soared so dramatically. We all reckoned the consultant had shares in the company, but it's amazing stuff. I;ve given it to my Mum, my daughter and always get myself some if I'm a bit under par. Doesn't taste that great - but it does the job.
Take care
X

 

[Lindy50]

Hi @Jezzer
Hope I’ve caught you in time to wish you well tomorrow xx
Looking forward to an update when you can.
Love
Lindy xx

 

[Jezzer]

Hi @Jezzer - me again, just popping in to send you a hug and wish you well!

I too have visited Mum this afternoon - not too bad a visit, but despite Mum having bumper visits over the weekend (me Friday, my daughter Saturday and me again today) another relative told me she was very distressed yesterday afternoon . If only she could remember the visits she's had.

Just wanted to say that when you are all 'transfused' a really good way to keep your blood good is a tonic called 'Fl*radix'. There is a specific iron one. I used to do platelet donation every couple of weeks, and the hospital looked after you like a prize specimen! A couple of times I could not donate as I was anaemic or borderline. The consultant advised me to take this stuff (it was less easily available then). When I returned the next time, the nurse in charge was amazed at how my iron levels had soared so dramatically. We all reckoned the consultant had shares in the company, but it's amazing stuff. I;ve given it to my Mum, my daughter and always get myself some if I'm a bit under par. Doesn't taste that great - but it does the job.
Take care
X

Thanks for the info Toony, that could be useful. Sad your mum can't recall the visits but I' sure she'd

 

[Jezzer]

Sorry ... have appreciated them at the time.
thanks so much for your best wishes.
Love Jan xxxx

 

[Jezzer]

Hi @Jezzer
Hope I’ve caught you in time to wish you well tomorrow xx
Looking forward to an update when you can.
Love
Lindy xx

Bless you Lindy. I'll update you as soon as I can.
Take good care of you!
Much Love
Jan xxx

 

[BothParents]

Hi Jezzer. First off ... YOU DO DESERVE PEOPLE's KIND WORDS. we are all equal. I am sure you'd be supportive of others in your situation and certainly wodnt want other people to be critical of themselves.
I totally relate to your situation. I have been through something similar with my father. Actually both my parents ave end stage dementia & yet they are affected differently. It has been months now since my father said my name or directly acknowledged (in some way) that "it is me" (& he recognises me).
There is no way of knowing whether he does now know who I am but what I do know is, he still responds favourably to touch & to the tone of my voice. I can't be sure if he does know I am his daughter anymore but I "feel" that he does. Actually, before I experienced any of this for myself, I used to think people were kidding themselves when they "believed" that someone still knew who they were if they couldn't firmly communicate that.
It is entirely different with my mother. She definitely still recognises me & my partner as well. You can see the recognition in her face & she says our names too. If she's in one of her "sleepy, I'm not going to open my eyes" modes, She recognises our voices as well. Despite this, She is often highly critical of me. Tells me to shut up. To get off her. But other days she's delighted to see/hear me & couldn't be more loving.
So I get two very different with my mother & the unknown with my father.
What I will say to you is that regardless of "what you get" each day and no matter how many times you get "kicked back" (by your mother not recognising you), even if you are greeted by frowns &/or frustration, that reaction or perhaps lack of reaction is a product of your mothers disease & it is not the "real her".
The relationship you have had with her before doesn't change & the pleasure you have given her by being there for her also will not change.
It might be that by physical touch you can still becalm your mother? You can also still talk to her even if you cannot be sure she can hear you. This is what I do with both my parents on days I am unable to be sure they know it's me there or even if they know anyone is there. I have been told that even if someone cannot communicate with you, or if they appear to be tally unresponsive, that they can often still hear you.
I spoke to my father last week & gave him many reassurances. About his care. About my mother's care. And to tell him that no matter what, I will always visit. I will always be there. Even though he couldn't respond, I was amazed that he seems to become very calm. He isn't often like that so it has reinforced my belief that he is still in there.
My belief is that you mother is still in there too but she is just unable to demonstrate this to you.
You have demonstrated your love for her and selflessly so. I believe she knows that too.

 

[Jezzer]

Hi Jezzer. First off ... YOU DO DESERVE PEOPLE's KIND WORDS. we are all equal. I am sure you'd be supportive of others in your situation and certainly wodnt want other people to be critical of themselves.
I totally relate to your situation. I have been through something similar with my father. Actually both my parents ave end stage dementia & yet they are affected differently. It has been months now since my father said my name or directly acknowledged (in some way) that "it is me" (& he recognises me).
There is no way of knowing whether he does now know who I am but what I do know is, he still responds favourably to touch & to the tone of my voice. I can't be sure if he does know I am his daughter anymore but I "feel" that he does. Actually, before I experienced any of this for myself, I used to think people were kidding themselves when they "believed" that someone still knew who they were if they couldn't firmly communicate that.
It is entirely different with my mother. She definitely still recognises me & my partner as well. You can see the recognition in her face & she says our names too. If she's in one of her "sleepy, I'm not going to open my eyes" modes, She recognises our voices as well. Despite this, She is often highly critical of me. Tells me to shut up. To get off her. But other days she's delighted to see/hear me & couldn't be more loving.
So I get two very different with my mother & the unknown with my father.
What I will say to you is that regardless of "what you get" each day and no matter how many times you get "kicked back" (by your mother not recognising you), even if you are greeted by frowns &/or frustration, that reaction or perhaps lack of reaction is a product of your mothers disease & it is not the "real her".
The relationship you have had with her before doesn't change & the pleasure you have given her by being there for her also will not change.
It might be that by physical touch you can still becalm your mother? You can also still talk to her even if you cannot be sure she can hear you. This is what I do with both my parents on days I am unable to be sure they know it's me there or even if they know anyone is there. I have been told that even if someone cannot communicate with you, or if they appear to be tally unresponsive, that they can often still hear you.
I spoke to my father last week & gave him many reassurances. About his care. About my mother's care. And to tell him that no matter what, I will always visit. I will always be there. Even though he couldn't respond, I was amazed that he seems to become very calm. He isn't often like that so it has reinforced my belief that he is still in there.
My belief is that you mother is still in there too but she is just unable to demonstrate this to you.
You have demonstrated your love for her and selflessly so. I believe she knows that too.

Thank you for your kind post and I am sorry to learn both your parents have Dementia. I have found many friends here on TP and we support each other.
My mother and I have a close, loving relationship which continues. I love her and she knows this just as I know she loves me. That love will never end. It is her illness which causes the confusion, periods of non-communication, lack of response and the need to sleep. Such is the progression of this disease in her case. It is not a problem for me when she is unable to communicate verbally and this will, of course, worsen as thus cruel illness progresses. On such days it is enough to sit holding her hand, stroking her forehead - which she loves - and which often results in a smile, and talk to her. I know she is fully aware I am there. I have to say I have never felt "kicked back" when there is no response, just sad. The deep bond of love will never be broken. I wish you strength in the times ahead and thank you again for your message.

 

[Jezzer]

Hi all
Am home from hospital. Transfusion went OK but I just felt a bit giddy afterwards so had to stay a little longer until it passed. Arrived home to the telephone ringing. It was CH to say they called GP out to mum today, really due to concerns over her noticeable drop in weight. Doctor stayed half an hour during which she didn't wake up. He has taken her off two of her meds as they will not help her now and declined the home's suggestion of supplement drinks as her appetite has gone. He said all they can do for her now is give her lots of TLC. I wish Ide been there as I have questions I would have asked. I knew this was coming but I can't stop crying. I will post again tomorrow when Ive got myself together. Thanks everyone. With love J xx