I've been avoiding this part of TP, but I think it's time to accept it...

Palerider

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Aug 9, 2015
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So here we are, another year of hot weather and well dreamy days when our lives are in order. My world is not the same as it was before, you know the ever doting son living with mixed feelings of grief and enormous guilt over the care home saga, well EMI placement and ensuing pandemic that no one saw coming and then a double whammy guilt trip over care home restrictions and even more guilt over what now have been unveiled as not exactly what we were led to believe dished down by politicians with no understanding of the impact their decision making had. Before all of that was the fight to get mum help and feelings of despair, tampered by services paid for by the taxpayer that just can't seem to deliver. In all of that we are still here battling an ever losing fight with Alzheimer's and the feeling I get is that no one actually cares or could give a flying toss from our health and social care system.

Mum fell yesterday and has an abnormal swelling on her leg, what has really pressed the wrong buttons with me is that mums CH nurse doing the right thing referred to her to the urgent care team (rather than call an ambulance) who by telephone triage and photo diagnosed cellulitis -SERIOUSLY? She fell and has an abnormal swelling post fall -would anyone like to try and come up with a better idea of what might be wrong, I bet members of TP are more likely to get it right. Besides having an explosive fit I have told the CH nurse that given they were so late (the urgent care team) in coming out to see mum not to worry about getting the antibiotics for an apparent rapid onset of cellulitis which by the urgent care team is more likely than an undisplaced fracture post fall or ruptured bakers cyst or haematoma. Clearly these days cellulitis is not hot touch, only swells at the top of the lower limb, is generally just not in keeping with cellulitis even though apparently it is.

This is the state of healthcare today, and after 35 years in it I have to say it seems no one seems to know what the history tells in terms of the most LIKELY diagnosis and frankly I give up. It is just not good enough and in my view the pay rise should not have been given at all -there are healthcare professionals out there getting good money for bad practice -come Monday I will be looking into this.
 
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Grannie G

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Apr 3, 2006
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I’m so sorry to hear this @Palerider

As a recent victim of a fall and suffering cellulitis I understand your mother is much more frail than I am and can only hope she gets the treatment she deserves
 

Palerider

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So the urgent care team had dispensed a nurse practitioner to visit mum, and even though she felt it was not cellulitis she still prescribed abx to cover just in case:rolleyes: -seriously? I think healthcare professionals sometimes feel they can't do right for doing wrong and I guess I can see why she felt the need to still prescribe abx. Anyway the likely cause was a ruptured Bakers cyst cause by her fall -though I am sceptical of medical telephone triages, there is a lot to be said for person to person visits, bu this is the state of our healthcare system unfortunately -not enough resources to do the job.

Anyway today I visited and there is mum wandering around the unit in her bare feet :mad: -you can imagine what immediately followed. I was polite but pointed out the unit floor is filthy with numerous people bringing in all kinds of bugs and dirt on their feet, not to mention mums slippers fit her even though she has swelling because they are a size bigger. The male carer didn't seem to have thought this through, but within ten minutes he realised my point -if she picks up an infection in her feet it will be another problem she just doesn't need that could have been prevented, not to mention mum is very compliant when it comes to getting dressed and she loves her slippers. I ended up putting them on her, I couldn't see any problems with them fitting still. Its moments like these where doubt creeps in and those old feelings of guilt stir up once more. I know this new carer means well, but there is more to caring than just getting basic tasks done, it's about meeting a person's needs.
 

Palerider

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The biggest pitfall for people with dementia is they can’t speak for themselves.
The downfall of this specific disease.

What doesn't help is the constant change in carers, mum's unit had a few good ones that had stayed on, but even they have moved onto new pastures, so the cycle begins over and over again -what was talked about six months ago or 3 months ago or even one months ago gets forgotten because the people who I had those conversations with have left -it's ironic that a dementia unit seems to have no memory of its own.
 
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Palerider

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Today I was looking at the photographs I took of mum when I took her to Malta in 2016 -her last ever holiday. I did get quite teary, maybe its not always a good thing to look back, but it did make me realize how much she has changed physically. I think if any of her old friends saw her now they probably wouldn't instantly recognize her. She remembered Valetta (mum and dad lived there in the 60's) and it was worth the effort taking her back to Malta and on reflection I am glad I did it. I had two old photographs printed and framed professionally which have arrived this weekend, I think I have shared one of them before, I haven't decided where to hang them yet or if they should be together -two of the most influential women in my life...my gran and my mum. The photo's are Circa 1946
20230723_152402.jpg
 

Palerider

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Today I visited my mum as I always do without fail. Today she was very different and for the first time I have to say even though she can’t tell me she seemed weary and lost, almost as if she was just going through the motions because that is what CH routine has taught her. Today she was different than before all the other times I have seen her on this journey from hell. Her eyes were distant, almost looking at something that no one could see, and her demeanour swallowed up, consumed by a disease that has tortured her now for years. I am thankful that even though this part of the journey is equally as bad as when there was awareness to what was before, that even though now in his moment my mum looks so far and distant, that she has persevered to be herself, but I also know when my mum is done and today I saw that look and sensed something about her that I had not sensed before. She is now crippled with spinal contracture and I know she is looking continuously to find her way home.
 

GillP

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Aug 11, 2021
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Today I visited my mum as I always do without fail. Today she was very different and for the first time I have to say even though she can’t tell me she seemed weary and lost, almost as if she was just going through the motions because that is what CH routine has taught her. Today she was different than before all the other times I have seen her on this journey from hell. Her eyes were distant, almost looking at something that no one could see, and her demeanour swallowed up, consumed by a disease that has tortured her now for years. I am thankful that even though this part of the journey is equally as bad as when there was awareness to what was before, that even though now in his moment my mum looks so far and distant, that she has persevered to be herself, but I also know when my mum is done and today I saw that look and sensed something about her that I had not sensed before. She is now crippled with spinal contracture and I know she is looking continuously to find her way home.
So sorry to read of your Mum’s decline. That look is so hard to witness. Thinking of you both.
 

Palerider

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Today I have uncorked an expensive bottle of Chablis Premier Cru fresh out of the fridge as I feel I deserve to spend Saturday afternoon mildly sloshed as the shopping is done and I am not going out again. I can never understand people who drink straight after work, I prefer to wait until a day off.

Anyway the constant state of limbo remains with mum. I love her so much but wish we weren't at this point in her journey. My visits now seldom have the meaning they once had, but now and again mum shines through. Today she was painfully shuffling round the unit and would not let me help her to stop and sit down, I wasn't a familiar face as I sometimes am. All I can see through the fancy flares I bought her (due to her lower legs being so swollen) is just a boney thigh moving, no muscle at all. I am in awe that she is managing to still mobilise. One of the carers who has known mum since she became a resident there said the day my mum stops walking will be the day she dies -I found myself agreeing.

Life outside of the EMI unit has also been tough. I have been on this dementia journey now for 8 years and I am almost alone, even once close friends no longer bother. I was supposed to be finally taking a holiday in October with someone who was a friend, but that has fell through not surprisingly. Part of me finds it difficult to leave while mum is as she now is, but another side of me is done with people who haven't bothered in years and suddenly out of the blue expect me to drop everything and when I don't I get attitude. I have a few friends all recent work colleagues that have made an effort even though we live a distance a part, but older friends have drifted by the way side as have mums family and friends -just simply no one bothers anymore.
 
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SeaSwallow

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Today I have uncorked an expensive bottle of Chablis Premier Cru fresh out of the fridge as I feel I deserve to spend Saturday afternoon mildly sloshed as the shopping is done and I am not going out again. I can never understand people who drink straight after work, I prefer to wait until a day off.

Anyway the constant state of limbo remains with mum. I love her so much but wish we weren't at this point in her journey. My visits now seldom have the meaning they once had, but now and again mum shines through. Today she was painfully shuffling round the unit and would not let me help her to stop and sit down, I wasn't a familiar face as I sometimes am. All I can see through the fancy flares I bought her (due to her lower legs being so swollen) is just a boney thigh moving, no muscle at all. I am in awe that she is managing to still mobilise. One of the carers who has known mum since she became a resident there said the day my mum stops walking will be the day she dies -I found myself agreeing.

Life outside of the EMI unit has also been tough. I have been on this dementia journey now for 8 years and I am almost alone, even once close friends no longer bother. I was supposed to be finally taking a holiday in October with someone who was a friend, but that has fell through not surprisingly. Part of me finds it difficult to leave while mum is as she now is, but another side of me is done with people who haven't bothered in years and suddenly out of the blue expect me to drop everything and when I don't I get attitude. I have a few friends all recent work colleagues that have made an effort even though we live a distance a part, but older friends have drifted by the way side as have mums family and friends -just simply no one bothers anymore.
That is so sad @Palerider but unfortunately very common. The life of a carer can be so lonely.
 

GillP

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Aug 11, 2021
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@Palerider , the isolation we endure as carers and that our loved ones with dementia encounter is unbearably sad. For us the situation was made worse by Covid but only improved a bit after it.

One neighbour was a rock throughout. He’d visit my husband and play dominoes. Then, when James went into residential care he’d invite me for coffee almost every day. A small group visited a few times but it wasn’t often enough in my opinion. Sadly others seemed to disappear, the odd phone call but that was it.

I do think it’s because people fear and don’t understand dementia. The neighbour, who was so supportive, is now in a nursing home. He has bowel cancer and is too weak for surgery. If the GP and hospital had acted sooner I think things would have been very different. The big difference I have noticed is that he has numerous visitors most days.

I am glad my neighbour has the visitors but it just highlights to me the problems surrounding dementia.

I hope that you enjoyed your day off and I also hope that you start to reconnect with friends. Thinking of you and your Mum.
 

Grannie G

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Apr 3, 2006
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just simply no one bothers anymore.

It`s the price so many carers pay @Palerider. Friendship can be quite fickle.

Most of us have or have had lots of friends but it is said you can count on the fingers of one hand the really true friends who will be there whatever is being asked of them, even when they are not asked.

The ones who are only there when life is good are fair weather friends.

I know this doesn`t help you in your disappointment but you are in good company.
 

Chaplin

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May 24, 2015
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@Palerider hope you enjoyed getting sloshed! Agree completely with how friends disappear! My mum has been in care almost 4 years and seems to be living in the very advanced stage of her dementia. Yet I can count on one hand how many of the huge extended family we have, have visited her!

People think being part of a big family is a comfort because of all the extra ‘support’ we must get! My dad, brother, sister and myself are the constant visitors to my mum.

Sadly we have 3 people in the wider family living with untreatable cancer for which I’m truly sorry. Each of them have quite a lot of visits or phone calls from the wider family.

I wouldn’t mind if they even took the time to visit my elderly dad who misses my mum so much, he’s deaf and struggles with the phone but just an occasional visit would mean so much to him. He recently said to me and my sister when we suggested visiting one of his poorly relatives, why should I, no one bothers with me! He’s one of the most generous people I know so we were surprised to hear his comments even though we thought the same ourselves!

I have a dear friend who I see every 6 weeks or so, but we stay in touch on the phone/email. Her mum also had dementia so she understands the isolation. Dementia has certainly helped sift true friends from acquaintances!

Hope you have a good visit next time you see your mum.
 

Palerider

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Aug 9, 2015
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Thanks all.

I only managed half a bottle of the Chablis and then famously crashed out in my chair downstairs -I just hope the neighbour didn't hear my snoring. I woke with a painfully stiff neck and though it's not a good idea to snooze in a chair with spinal issues, the snooze crept up on me -well that's my excuse!

I felt immediately sorry for my mum when her friends stopped plus all of her own immediate family are dead in terms of her side of the family. My dads side of the family have never bothered since my dad died which speaks volumes to me as well @Chaplin and then there is my brother who seems to have no conscience at all plus his family, which leaves just me. But it is OK, as hard as it may be sometimes I will stand by my mum whatever the cost until the bitter end as I promised. The people that have supported me and really become 'good friends' are not any of my old mates at all, but I guess thinking about it so much time has passed since I was with my old friends that maybe they were just 'fair weather friends' as you say @Grannie G.

I think dementia is only a partial answer @GillP it also permits a reason for people not to engage rather than see staying in touch as a vital part of friendship certainly in the early stages. I suppose as dementia advances to the middle stages it can become more difficult, but the end stage is very different again. Only one of mums friends has stayed in touch via Messenger and even she only messages' me once every 6 months despite the fact she lives closer than me to the EMI unit as do all her friends and my vile brother and his kin.
 

Palerider

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Aug 9, 2015
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Awful week, my back issues are playing up which means I am off work again and can barely walk. I have had to call the CH as I have been unable to physically visit but hoping this flare up settles down by the weekend so I can see my mum. On a more positive note the holiday to Greece is back on after another conversation with R who has realised she is not the only one dealing with the **** life throws at us. She said 'we can both be miserable together' -long way to travel for that :rolleyes:. I am worried that I now might not be able to travel due to my back problems, but as there are 4 weeks to go and I can't get a refund now anyway I will just have to see how things go. The other issue is that I have not been able to leave because if I do there will be no one visiting mum for a week or two and that fills me with dread and guilt up to my eyeballs.
 

Grannie G

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Apr 3, 2006
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Oh dear @Palerider I know how debilitating back problems are and the pain is so draining. Have you tried an osteopath? I was lucky to find someone really good who sorted me out even though I still take care and try not to bend.

It`s awful when you are prevented from visiting. Your mind can work overtime imagining all sorts while your dear mum will probably be unaware you haven’t visited.

As far as guilt is concerned. Take the advice I’m sure you would give others.

I hope your back gets sorted and you are able to make your holiday