Hope you have a good time with the coffee and cake @Palerider. Glad you are getting things sorted with the DN and the care home. Also hope you can get the equity release horror sorted. I hate the way elderly people get ripped off.
A lifelong friend and me
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Before visiting mum I went to the cafe to have breakfast and sat reading a clinical book as I now have a mentee to train up and thought it best to refesh my memory of clinical examination and assessment (the detailed stuff). As I sat my mind wandered and I found myself reading the papers and trying to find the weekend horoscope (don't ask!) and then I looked up and around me were a few families with their older relatives, sitting down, eating together, talking and laughing. As I looked I got quite jealous and I am fair to admit this, I felt robbed of a chance to have the same thing with my mum -why isn't that me just taking life as it should be instead of dealing with this **** disease??? I feel very cheated and so fed up with all of the **** this ****** disease brings 
Hi @Palerider I think your patience and compassion you show for your mum is amazing. And as for the jealousy, I’m only 6 months in and I find myself getting jealous at the obituaries, at the people who’ve passed away “after a short illness” and I think you lucky b*****d. my mum passed away from bowel cancer and used to say she was glad she had that and not dementia. And now I know what she means.,
Hmm I think my dad had the better end to his life from cancer although it was short, but then we are faced with making value judgements about all of this and to be honest I am confused on what is 'the best'. I am off to bed and taking my sorrows with me, work tomorrow and another day and to be fair if I am honest I feel weary and fed up
Hi @Palerider - my apologies that it's been a while, the last few weeks have been a bit full on! I have been following though!
So sorry that you have all this **** to deal with the Equity Release. I hate those adverts too and my OH thinks that it will be the next big financial disaster ( like PPI etc etc). I also know just how difficult it is not to feel a bit envious of those that can have a good time with their elderly parents/relations. Sadly we have membership to the club that has lost all that. My Mum's birthday is a couple of days before Christmas and it really bangs it home how much she deteriorates each year. This year she hadn't a clue about cards, presents or gifts, or that it was a special day.
Mum was really not good before Xmas, 2 falls out of bed and a black and blue face. She now has cot sides, a mattress and a pressure mat by the bed. The GP has raised the subject of end of life care - we are not quite there, but I have had to make all the relevant decisions and will be doing all the liaison with the relevant people soon. Then I got the cold/cough lurgy - I was petrified I'd give it to Mum, but somehow managed not to. Phew!
I know how sad this can make you feel. All the 'if only's' and lost opportunities, both for you and your Mum. As for me, I just try to squeeze whatever enjoyment I can out of my time with Mum, enjoy it and then store it up for the really bad days.
Take care of yourself, and love to you both.
So sorry that you have all this **** to deal with the Equity Release. I hate those adverts too and my OH thinks that it will be the next big financial disaster ( like PPI etc etc). I also know just how difficult it is not to feel a bit envious of those that can have a good time with their elderly parents/relations. Sadly we have membership to the club that has lost all that. My Mum's birthday is a couple of days before Christmas and it really bangs it home how much she deteriorates each year. This year she hadn't a clue about cards, presents or gifts, or that it was a special day.
Mum was really not good before Xmas, 2 falls out of bed and a black and blue face. She now has cot sides, a mattress and a pressure mat by the bed. The GP has raised the subject of end of life care - we are not quite there, but I have had to make all the relevant decisions and will be doing all the liaison with the relevant people soon. Then I got the cold/cough lurgy - I was petrified I'd give it to Mum, but somehow managed not to. Phew!
I know how sad this can make you feel. All the 'if only's' and lost opportunities, both for you and your Mum. As for me, I just try to squeeze whatever enjoyment I can out of my time with Mum, enjoy it and then store it up for the really bad days.
Take care of yourself, and love to you both.
Once mum got settled in her care home I was able to take her out for a few hours, including lunch. By this time her paranoia and anxiety had gone and most of her old personality came back, so she became a whole lot of fun to take out. Im sure you will be able to take your mum out again too.
Hi Palerider,
I am new to the TP and have recently added a post, I am sorry for jumping in to one of your older posts but wanted to ask why you were reluctant to manage direct payments, I have POA for both health and finances and have been asked by SS about direct payments, should I also be apprehensive, dad is in respite with a view to more permanent, the funding and top up information is not forthcoming from SS. I am not in a position to offer any top up and wondered if accepting direct payments would be a bad decision?? I hope this makes sense,
Many thanks from yet another heartbroken member, I can't tell you how much I have appreciate reading all your heartfelt and honest accounts thus far.
Hello @Anmarg
Try not to worry too much about direct payment (DP), you cannot be forced to undertake this if you feel you don't want the resposnibility. I declined purely because I already had a lot going on and at the end of the day it makes no difference to how much the local authority will pay as they will have fixed rates for care homes whether they manage it or you do. After that you may wish to top-up (if you want to move to a care home with a higher rate), but this is something you have control over, you can't be forced to top-up either, but not being able to top-up will limit the choice you have on which care home your dad resides in.
You might find this useful as a starter https://www.ageuk.org.uk/Documents/...Direct_Payments_Report_June2013.pdf?dtrk=true
In summary if you don't want the responsibility of DP's then decline and the LA will arrange care payment. Be sure you have a basic awareness of what rates they will pay for care and be clear that you can't afford to contribute with top-ups. Hope that helps
Yes the equity release is a real new years gift
-NOT, but it has to be managed like everything else and I have no way of thwarting a multi billion pound finance company -unfortunately. I am going to lodge my concern with the finacial ombudsman -thats the least I can do. Yes I think your OH is right on it being the next disaster after PPI.I'm sorry to hear your mum was not so good and has taken yet another downturn. Mum also seems to be physically less well, but for now she still has some gumption and get up and go, how long that will last I am not sure on some days I visit.
I do use every moment I can as you also do, its all we can do in the end. Its important not to devalue what little is left I guess, its all too precious to let even an ounce go by
[QUOTE="Palerider, post: 1688085,
...... Mum also seems to be physically less well, but for now she still has some gumption and get up and go, how long that will last I am not sure on some days I visit.
I do use every moment I can as you also do, its all we can do in the end. Its important not to devalue what little is left I guess, its all too precious to let even an ounce go by[/QUOTE]
After bringing Mum to my house for Christmas and thinking this will be the last year it is possible. Then taking Mum to buy some clothes today I was also thinking I need to make the most of these days. Seeing Mum smiling as she was watching a toddler play made me smile too.
...... Mum also seems to be physically less well, but for now she still has some gumption and get up and go, how long that will last I am not sure on some days I visit.
I do use every moment I can as you also do, its all we can do in the end. Its important not to devalue what little is left I guess, its all too precious to let even an ounce go by
[/QUOTE]After bringing Mum to my house for Christmas and thinking this will be the last year it is possible. Then taking Mum to buy some clothes today I was also thinking I need to make the most of these days. Seeing Mum smiling as she was watching a toddler play made me smile too.
[QUOTE="Palerider, post: 1688085,
...... Mum also seems to be physically less well, but for now she still has some gumption and get up and go, how long that will last I am not sure on some days I visit.
I do use every moment I can as you also do, its all we can do in the end. Its important not to devalue what little is left I guess, its all too precious to let even an ounce go by
After bringing Mum to my house for Christmas and thinking this will be the last year it is possible. Then taking Mum to buy some clothes today I was also thinking I need to make the most of these days. Seeing Mum smiling as she was watching a toddler play made me smile too.[/QUOTE]
Its funny my mum does the same when she see's children and she talks to them and makes fuss
I looked up and around me were a few families with their older relatives, sitting down, eating together, talking and laughing. As I looked I got quite jealous and I am fair to admit this, I felt robbed of a chance to have the same thing with my mum -why isn't that me just taking life as it should be instead of dealing with this **** disease??? I feel very cheated and so fed up with all of the **** this ****** disease brings
Hi @Palerider, I know those difficult feelings so well - I lost both parents to it, and when I ask my friends that I grew up with about their parents they always say how well they are doing - which is obviously a good thing, but sometimes I felt extremely envious, which is not a place I want to be. As I have said many times, no-one truly understands the relentless heartbreak until they have walked in those shoes.
Good job I am off today. Just off the phone with mums SW, finally they have found a couple of nursing EMI units with beds, but I'm not happy as these are some distance away and the one that I liked which had places at the time this was decided is now full. Both have good CQC reports, but this isn't great. The SW seemed to want to get this sorted and in a way fobbed me off down the phone, but I'm not sure about this. I'm off to to see one of the homes this afternoon but I'm not agreeing to anything unless I am 100% sure. Mums current home have given notice, so I have to make a decision sooner rather than later
Difficult decisions. Im sorry the place you wanted is now full. Yes, dont agree to something that you are not happy with.
What a day, I have visited 3 care homes and also popped in to see mum since this morning, all a distance away. One care home I thought I was driving to timbuktu -on arrival it was a definite NO before going in, and the tour confirmed the NO. On to the next one which is reserved if all else fails (but its on the list, albeit at the bottom). The third was a YES, although a distance from family it was a decent place, well staffed, only 20 residents and ran by an established charitable organisation who specialise in campaiging for elderly care in the area, this CH is currently the most likely and I know mum will like it, not so many residents and she can potter till her hearts content. One more to visit tomorrow and thats it everywhere else is full. Luckily they are all willing to keep the bed until Friday by which time I have to decide.
-on arrival it was a definite NO before going in, and the tour confirmed the NO. On to the next one which is reserved if all else fails (but its on the list, albeit at the bottom). The third was a YES, although a distance from family it was a decent place, well staffed, only 20 residents and ran by an established charitable organisation who specialise in campaiging for elderly care in the area, this CH is currently the most likely and I know mum will like it, not so many residents and she can potter till her hearts content. One more to visit tomorrow and thats it everywhere else is full. Luckily they are all willing to keep the bed until Friday by which time I have to decide.
Right while I am making my tomato rague for various pasta dishes I thought I'd reveal what has been going on and why mum has to be moved -its all very annoying but also there have been some big issues.
To cut long story short I made a number of mums needs very clear when she moved into the CH. The CH have not followed these at all as well as witnessing other problems with other residents I felt after two months of mum being there I had to raise my concerns (I can't ignore neglect as a senior registered nurse). Last week I had reached my limit and I wiped the floor with the staff after a number of serious problems, so now a notice to quit has been served. Frankly I am relieved as mums SW was willing to leave it all to me, but now they have to sort this and today after alot of hard work I think we have. Good riddance to bad care
To cut long story short I made a number of mums needs very clear when she moved into the CH. The CH have not followed these at all as well as witnessing other problems with other residents I felt after two months of mum being there I had to raise my concerns (I can't ignore neglect as a senior registered nurse). Last week I had reached my limit and I wiped the floor with the staff after a number of serious problems, so now a notice to quit has been served. Frankly I am relieved as mums SW was willing to leave it all to me, but now they have to sort this and today after alot of hard work I think we have. Good riddance to bad care
@Palerider, I can think of better ways of spending days when not working, but glad you have a plan. I was going to say its a shame the home have given your mum notice, as I was hoping she'd settle and they'd get better at helping her. Obviously it was not to be.
Hope you can make a decision and get things sorted by Friday.
Hope you can make a decision and get things sorted by Friday.
Hi @Palerider, good news that you have found somewhere that will suit Mum. Sorry to hear about your experience with the Home, I had something similar when I had the temerity to raise a serious safeguarding issue with a home care company they acknowledged it by sending me an email of notice at 9.30pm without discussing it with me. It was quite shocking at the time, but probably symptomatic of the whole culture of the company.
Thanks @Sarasa and @Pete1
I could see there were problems from the start and this isn't about mums behaviour, which was the original reason for having to move mum as they can't cope with a pwd with challenging behaviour (though my mum is prity tame in comparison to others there) -plus its more to do with how she is handled or more precisely not handled! Plus I watched other residents being bullied which of course made me respond.
In all of this not once has the care home manager spoken to me or addressed any of the issues with me, which looks bad in my books. Mum has repeatedly said she doesn't like the place -putting the dementia to one side I can see why. At the end of the day none of these issues have been intentional by the CH but are a result of too many residents and too little staff and the stress that builds up day after day and lack of training (care skills). Its tough running a care facility wherever that is (and I can appreciate that as an ex-manager), but its has to be safe, well staffed and they need to be trained appropriately for the job and staff behaviour has to be montiored. Its a shame because many of the staff are good people doing a difficult job day in, day out and many of them really like mum, but a few bad apples have turned it sour.
I have raised my concerns and if the price is that mum is moved on then so be it. Off to look at the final care home today and then decide -I think my mind is already made up -and this time round I have vetted the homes.
I could see there were problems from the start and this isn't about mums behaviour, which was the original reason for having to move mum as they can't cope with a pwd with challenging behaviour (though my mum is prity tame in comparison to others there) -plus its more to do with how she is handled or more precisely not handled! Plus I watched other residents being bullied which of course made me respond.
In all of this not once has the care home manager spoken to me or addressed any of the issues with me, which looks bad in my books. Mum has repeatedly said she doesn't like the place -putting the dementia to one side I can see why. At the end of the day none of these issues have been intentional by the CH but are a result of too many residents and too little staff and the stress that builds up day after day and lack of training (care skills). Its tough running a care facility wherever that is (and I can appreciate that as an ex-manager), but its has to be safe, well staffed and they need to be trained appropriately for the job and staff behaviour has to be montiored. Its a shame because many of the staff are good people doing a difficult job day in, day out and many of them really like mum, but a few bad apples have turned it sour.
I have raised my concerns and if the price is that mum is moved on then so be it. Off to look at the final care home today and then decide -I think my mind is already made up
-and this time round I have vetted the homes.
Hi @Palerider, I hear you. It takes a very strong and diligent management team who absolutely drive the right culture to make a Residential Care Provision or Home Care Provision operate effectively and safely. All the best.
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