APPROACHING END WITH MUM : EVERY DAY IS DIFFERENT

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Jezzer

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Jun 12, 2016
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Lincoln, UK
Calm and settled and you able to have a little me-time, that's good xxxx
Thank you so much. Yes today has been quite peaceful. Met an elderly lady in the hair salon who had been a nurse & trained in London teaching hospital. She told me she had been in theatre when the first heart and lung transplant took place. What an amazing career she had and it was fascinating to listen to her. I think we can get so engulfed by this illness that we become detached from other people - that's definitely happened to me - and I'm realising I need to re-connect with so many things I've - not intentionally - become distanced from. I hope this makes sense! Apologies for my overlong reply. Thanks again. How are things with you? Love Jan xx
 

YorkshireLass

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Feb 15, 2017
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Ilkley
Thank you so much. Yes today has been quite peaceful. Met an elderly lady in the hair salon who had been a nurse & trained in London teaching hospital. She told me she had been in theatre when the first heart and lung transplant took place. What an amazing career she had and it was fascinating to listen to her. I think we can get so engulfed by this illness that we become detached from other people - that's definitely happened to me - and I'm realising I need to re-connect with so many things I've - not intentionally - become distanced from. I hope this makes sense! Apologies for my overlong reply. Thanks again. How are things with you? Love Jan xx
Hi Jan, it all makes perfect sense.The realisation that everyone else is getting on with their lives is sometimes a difficult thought. It's easier to disconnect and just deal with the caring. If other things crop up I just find it's another thing to add to the to do list so I tend to avoid. We are doing our best that's for sure. I've not had a good week with mum and my afternoon visits. At the beginning of the week mum was very awake. Always tricky. She was frightened, crying and wanting to "get out". She wouldn't settle even with every distraction imaginable so I just had to be there for her. Yesterday and today she has been asleep, a bit restless but otherwise calm. It seems to be one extreme to the other and I sometimes think the sleeping mode is preferable and gives me hope that maybe it might all be over soon, Sad as that is. We can't change it I know that and sometimes I cope really well and other times plenty of tears. I hope tomorrow is a peaceful day for us both - love Julie xxxx
 

Jezzer

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Jun 12, 2016
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Lincoln, UK
Hi Jan, it all makes perfect sense.The realisation that everyone else is getting on with their lives is sometimes a difficult thought. It's easier to disconnect and just deal with the caring. If other things crop up I just find it's another thing to add to the to do list so I tend to avoid. We are doing our best that's for sure. I've not had a good week with mum and my afternoon visits. At the beginning of the week mum was very awake. Always tricky. She was frightened, crying and wanting to "get out". She wouldn't settle even with every distraction imaginable so I just had to be there for her. Yesterday and today she has been asleep, a bit restless but otherwise calm. It seems to be one extreme to the other and I sometimes think the sleeping mode is preferable and gives me hope that maybe it might all be over soon, Sad as that is. We can't change it I know that and sometimes I cope really well and other times plenty of tears. I hope tomorrow is a peaceful day for us both - love Julie xxxx
Hi again Julie. I'm so sorry you are having such a difficult time right now. We certainly are doing our best - there's no training manual for this is there? Yes let us hope for a peaceful day tomorrow. Look after yourself. With love Jan xxxxx
 

Jezzer

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Jun 12, 2016
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Lincoln, UK
Hard to believe it's a fortnight since that awful experience with the paramedics. Time seems to be flying by.

Lovely surprise this morning. Couldn't hear Mum calling out so thought she would be sleeping. Nope! She was wide awake and I got that beautiful smile and she said, very clearly, "my little girl" when I walked into her room. She never ceases to amaze me. I always make sure she has fresh roses in her room. These past few weeks she's not noticed but this morning she definitely saw them & said "Ah, lovely". I said lovely flowers for a lovely lady which brought another broad smile. She even had a sherry and it's been a long time since she's said yes please when offered one. It was just lovely to see her smiling and engaged for a while. Then she went back to that other place in her mind and drifted into sleep. A precious few hours to be treasured and that warm feeling of love in the room. I know we were not alone. Sending love and hugs especially to my friends who are in such emotional pain right now. Jan xxx
 

YorkshireLass

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Feb 15, 2017
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Ilkley
Hard to believe it's a fortnight since that awful experience with the paramedics. Time seems to be flying by.

Lovely surprise this morning. Couldn't hear Mum calling out so thought she would be sleeping. Nope! She was wide awake and I got that beautiful smile and she said, very clearly, "my little girl" when I walked into her room. She never ceases to amaze me. I always make sure she has fresh roses in her room. These past few weeks she's not noticed but this morning she definitely saw them & said "Ah, lovely". I said lovely flowers for a lovely lady which brought another broad smile. She even had a sherry and it's been a long time since she's said yes please when offered one. It was just lovely to see her smiling and engaged for a while. Then she went back to that other place in her mind and drifted into sleep. A precious few hours to be treasured and that warm feeling of love in the room. I know we were not alone. Sending love and hugs especially to my friends who are in such emotional pain right now. Jan xxx
All good Jan, well as good as it can be and much better than expected. So pleased for you both. I'm off to see mum in a few minutes, fingers crossed Julie xxx
 

Jezzer

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Jun 12, 2016
984
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Lincoln, UK
All good Jan, well as good as it can be and much better than expected. So pleased for you both. I'm off to see mum in a few minutes, fingers crossed Julie xxx
Thank you Julie. I am thinking about you and, yes, fingers very much crossed. Please let me know, when you can, how things are? With Love. Jan xxxx
 

YorkshireLass

Registered User
Feb 15, 2017
222
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Ilkley
Thank you Julie. I am thinking about you and, yes, fingers very much crossed. Please let me know, when you can, how things are? With Love. Jan xxxx
Hi Jan, not good this afternoon I'm afraid. Mum had undressed herself five times this morning and when I arrived she was crying and calling her own name. It was impossible to communicate through "the wall" that is Alzheimer's so I put my arms around her and kept repeating that we were alright and I was with her. It's like hugging your child when they've had a bad dream. So very sad. Anyway she drifted off to sleep and I held her until my arms and fingers were so numb I had to try and move and thankfully she was still dozing and just needed to grip my hand. I left about 20 minutes ago as she was going into the dining room for tea and as I waited to be "let out" of the front door I could hear her calling her own name yet again. What can be done to make the situation any better I just don't know. One of the other residents was taking his clothes off too and although he is much more connected with the world the carers couldn't get him to understand that he needed to keep his clothes on. I wonder if in this world of confusion the only thing left that the person can actually do is unbutton a dress or a shirt and take them off. Now I just keep fastening each of mum's buttons as she undoes another. I stopped questioning or explaining there's no need a long time ago.Thanks for asking, it really does help to tell the story love Julie xxx
 

Jezzer

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Jun 12, 2016
984
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Lincoln, UK
Hi Jan, not good this afternoon I'm afraid. Mum had undressed herself five times this morning and when I arrived she was crying and calling her own name. It was impossible to communicate through "the wall" that is Alzheimer's so I put my arms around her and kept repeating that we were alright and I was with her. It's like hugging your child when they've had a bad dream. So very sad. Anyway she drifted off to sleep and I held her until my arms and fingers were so numb I had to try and move and thankfully she was still dozing and just needed to grip my hand. I left about 20 minutes ago as she was going into the dining room for tea and as I waited to be "let out" of the front door I could hear her calling her own name yet again. What can be done to make the situation any better I just don't know. One of the other residents was taking his clothes off too and although he is much more connected with the world the carers couldn't get him to understand that he needed to keep his clothes on. I wonder if in this world of confusion the only thing left that the person can actually do is unbutton a dress or a shirt and take them off. Now I just keep fastening each of mum's buttons as she undoes another. I stopped questioning or explaining there's no need a long time ago.Thanks for asking, it really does help to tell the story love Julie xxx
Oh Julie, I'm really sorry. It's strange, mum calls out her own name too and seems to have "conversations" with herself. Today was lovely but a rare thing; mostly I cannot penetrate " the wall" either. She also calls out "somebody help me" and that's hard to hear when you're leaving. My heart goes out to you. When mum asks for help I ask what she needs and she inevitably says "nothing". It really is like reassuring a child. I dont think anything can be done sadly. I'm told years ago, before they had more knowledge of this wretched illness, it was common practice to "sedate" folk and to be honest I think that was really to benefit staff. I gather that heavy-duty anti-psychotic drugs were used used and, in many cases, over-administered which was barbaric. I wonder if a low dose anti-anxiety drug would help. The trouble is, of course, they come with side effects. I agree, it is sad. I think all we can do is what we are already doing. So many sufferers are "abandoned" by families. My brother has a colleague whose father is in a NH with dementia and he never visits "because he doesnt know me". I am appalled. You and I could never do that. We continue to spend time with our mums because we love them. I think perhaps Love is all there is now, it's all we can give but that love is precious and I feel, even through the fog of this disease, our mums can still feel that love. And I'm sending love to you together with hugs. Thank God for TP and lovely people like you who share their experience because we understand and it really helps. Take care dear Julie xxxx
 

YorkshireLass

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Feb 15, 2017
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Ilkley
Oh Julie, I'm really sorry. It's strange, mum calls out her own name too and seems to have "conversations" with herself. Today was lovely but a rare thing; mostly I cannot penetrate " the wall" either. She also calls out "somebody help me" and that's hard to hear when you're leaving. My heart goes out to you. When mum asks for help I ask what she needs and she inevitably says "nothing". It really is like reassuring a child. I dont think anything can be done sadly. I'm told years ago, before they had more knowledge of this wretched illness, it was common practice to "sedate" folk and to be honest I think that was really to benefit staff. I gather that heavy-duty anti-psychotic drugs were used used and, in many cases, over-administered which was barbaric. I wonder if a low dose anti-anxiety drug would help. The trouble is, of course, they come with side effects. I agree, it is sad. I think all we can do is what we are already doing. So many sufferers are "abandoned" by families. My brother has a colleague whose father is in a NH with dementia and he never visits "because he doesnt know me". I am appalled. You and I could never do that. We continue to spend time with our mums because we love them. I think perhaps Love is all there is now, it's all we can give but that love is precious and I feel, even through the fog of this disease, our mums can still feel that love. And I'm sending love to you together with hugs. Thank God for TP and lovely people like you who share their experience because we understand and it really helps. Take care dear Julie xxxx
Hi Jan, so many similarities. My mum has two way conversations too which I find much better than when she calls out her own name or says she is frightened.. They seem to keep her occupied and haven't escalated as yet anyway! We do love our mum's as they love us too. I've had the question from a family member "Why do you go everyday when she doesn't remember you've been?" He stopped visiting a while ago as, in his words, "I feel so depressed when I go". Really!!! I did go down the route of medication with mum after a real struggle with the Elderly Care Mental Health Team. It's a long story without a successful ending. Mum's been discharged back to the GP who is lovely and couldn't understand the drug mum had been prescribed and suggested it was stopped. Difficult times but as you say we continue to love xx Thanks again, without Talking Point and such caring folks we would be lost. Sending love and a hug right back to you xxxxx
 

Jezzer

Registered User
Jun 12, 2016
984
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Lincoln, UK
Had to visit earlier than I would really have wished this morning and Mum fast asleep so I didn't attempt to wake her. Staff said how much she's been making them laugh; she calls out such random things. They are not being unkind, she does come out with the strangest things and some are very funny. If it cheers up the hard-working staff then that's fine with me. She looked rested and snuggly. We will visit tomorrow afternoon so I hope she'll be awake. Love & Best to all Jan xxxxxz
 

Kikki21

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Feb 27, 2016
2,270
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East Midlands
Hi Jan @Jezzer I’m glad that you mum has been awake for some of the time you have visited.
The calling out thing is pretty common saying help me etc that is common too. My mum’s care home has residents that do exactly that. I don’t know maybe their brains have got to that stage that they don’t know what is going on around them & they do simply need reassurance.
I plan on visiting my mum later today as we have been working this weekend as per usual at this time of year.
Wishing you much love xxxxxx
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Hello my friend! How did Sunday go? Hope business was brisk?
Thank you for your message; staff tell me they like to hear mum call out (obviously not if she's in real distress) but what she says is so random and funny at times. She came out with a remark yesterday that caused my brother and I to do a double-take and then we just had to laugh. She was clearly telling someone off and called them a name we've never heard her use before. Nothing obscene but quite rude. I gather that's quite common too. I'm visiting this afternoon, like you, and I hope you have a positive visit. Take care and sending you love and hugs xxxxxxxx
 

YorkshireLass

Registered User
Feb 15, 2017
222
0
Ilkley
Hello my friend! How did Sunday go? Hope business was brisk?
Thank you for your message; staff tell me they like to hear mum call out (obviously not if she's in real distress) but what she says is so random and funny at times. She came out with a remark yesterday that caused my brother and I to do a double-take and then we just had to laugh. She was clearly telling someone off and called them a name we've never heard her use before. Nothing obscene but quite rude. I gather that's quite common too. I'm visiting this afternoon, like you, and I hope you have a positive visit. Take care and sending you love and hugs xxxxxxxx
Hope this afternoon goes well Jan. Same for me this aft - fingers crossed for us all xxxx
 

Jezzer

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Jun 12, 2016
984
0
Lincoln, UK
Hope this afternoon goes well Jan. Same for me this aft - fingers crossed for us all xxxx
Hi Julie - how are things with you? I hope your visit also goes well this afternoon. So good to have lovely folk like you to share this difficult experience with. The support means so much. We'll catch up later? With much love, Jan xx
 

YorkshireLass

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Feb 15, 2017
222
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Ilkley
Hi Julie - how are things with you? I hope your visit also goes well this afternoon. So good to have lovely folk like you to share this difficult experience with. The support means so much. We'll catch up later? With much love, Jan xx
Hi Jan, there was a concert on this afternoon but as mum has now gets agitated when there is something happening she was in the conservatory when I arrived. Calm at least but very mixed up. She greeted me as if I hadn't been with her for months, then cried. Words were few and far between and she was very vacant. She asked when Harry was coming (her brother who died in 2011) then called for her mum followed by calling her own name. I nearly cried myself at one point but fought it off thankfully. There seems to be no end to this torture. Hope you had a better afternoon love Julie xxx
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Hi Jan, there was a concert on this afternoon but as mum has now gets agitated when there is something happening she was in the conservatory when I arrived. Calm at least but very mixed up. She greeted me as if I hadn't been with her for months, then cried. Words were few and far between and she was very vacant. She asked when Harry was coming (her brother who died in 2011) then called for her mum followed by calling her own name. I nearly cried myself at one point but fought it off thankfully. There seems to be no end to this torture. Hope you had a better afternoon love Julie xxx
So sorry you had a distressing visit Julie. It leaves us feeling emotionally drained but also very sad doesn't it? Seeing her cry is so distressing too. I'm not surprised you almost broke down too. Mum slept soundly throughout my visit. She was so vocal yesterday that I expected this. Mum calls out for her "mam", two of her sisters who passed away several years ago and, like your Mum, her own name. Ive not seen her cry for about 5 years. That's a blessing really. I would find that awful which is why I feel for you. It's such a cruel and far-reaching disease. Sending you love and hugs my friend. We are here for each other. Jan xxxxxx
 

YorkshireLass

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Feb 15, 2017
222
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Ilkley
So sorry you had a distressing visit Julie. It leaves us feeling emotionally drained but also very sad doesn't it? Seeing her cry is so distressing too. I'm not surprised you almost broke down too. Mum slept soundly throughout my visit. She was so vocal yesterday that I expected this. Mum calls out for her "mam", two of her sisters who passed away several years ago and, like your Mum, her own name. Ive not seen her cry for about 5 years. That's a blessing really. I would find that awful which is why I feel for you. It's such a cruel and far-reaching disease. Sending you love and hugs my friend. We are here for each other. Jan xxxxxx
Thank you Jan xx I'm so pleased your mum was settled in bed. I used to feel sad if mum was asleep but now I am grateful. My mum never used to cry before Alzheimer's took over. She was a calm, level headed and loving mum who oozed security and would face anything. It certainly is a dreadful disease that seems to go on forever. I have to be positive about today.....mum was calm and loving. Thank you for being there my friend with love Julie xxxxx
 

Scared1

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Sep 8, 2018
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Hi Monika. Yes I'm sure we all get down visits; sorry yours was so today. Thanks so much for your good wishes. Love Jan xxxx
My poor mum age 65 to 76 dentia now my husband past experience is pick a residential place for respite.... we are allowed it every 4 to 6 months....then when its time for full time residential its easier to get a lovely place of your choice.... funding is then normally granted .. hope this helps...
 

Scared1

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Sep 8, 2018
14
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So sorry you had a distressing visit Julie. It leaves us feeling emotionally drained but also very sad doesn't it? Seeing her cry is so distressing too. I'm not surprised you almost broke down too. Mum slept soundly throughout my visit. She was so vocal yesterday that I expected this. Mum calls out for her "mam", two of her sisters who passed away several years ago and, like your Mum, her own name. Ive not seen her cry for about 5 years. That's a blessing really. I would find that awful which is why I feel for you. It's such a cruel and far-reaching disease. Sending you love and hugs my friend. We are here for each other. Jan xxxxxx
My mum always cried out for her mum...its late stage....my kum passed away peacefully...no pain ...believe me stick to your guns THERE IS ABSOLUTLY NO REASON WHY THEY SHOULD SUFFER...JUST STAY WITH THEM AND FIGHT THEIR CORNER...TILL THE BITTER END..... XX
 

Scared1

Registered User
Sep 8, 2018
14
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My mum always cried out for her mum...its late stage....my kum passed away peacefully...no pain ...believe me stick to your guns THERE IS ABSOLUTLY NO REASON WHY THEY SHOULD SUFFER...JUST STAY WITH THEM AND FIGHT THEIR CORNER...TILL THE BITTER END..... XX
I did it with my mum now i will do iit for my husband....
 
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