After battling for weeks it came to crunch time and Mum being a political pawn between different services. It has been hell.
I've had to stand my ground so much with everyone & I'm appalled at the hassle I had daily about making a decision I didn't agree to....A nursing home.
The last 8 days I've had to be even firmer & not agree or accept the one home LA offered me and tell them I'm not being rushed or pressured by anyone. Kevin advised me on a letter to write which I never got a response too! Another complaint to be made to add to the very long list.
My priority has been to Mum and my own sanity , I will have to battle CHC & LA once Mum is settled. I've told them I won't be paying anything extra so don't even bother asking me.
Hospice want their bed back and no care available in the community so that left us with short term placement in nursing home. Since Mum been declared as medically stable, as she will be, they have pushed for a nursing home, against her wishes. I don't see her leaving anytime soon once admitted to one as she won't be priority for care to be sourced.
I have driven so many miles around our county and visited 6 nursing homes. All very different and really did break my heart in some of the places.
Thursday we made final decision on a place that ticked the most boxes. The main thing that swung it for me was the Manager, she came out to see Mum twice at the hospice and second time bought one of the lead nurses to meet Mum. Who would be her key worker. Other homes didn't even want me present at their assessment or information about her condition.
Mum has been so upset and believed I didn't care about her anymore and it was me putting her into a home. That really did crucify me.
Me and the manager choose her room together , she showed me 6 in total over my visits to home. It has been redecorated and she has asked me to bring personal bits and bobs down before Mum arrives on Wednesday to make it more welcoming to her. She also wouldn't accept her before Wednesday due to when the key worker would be on shift for a good number of days, with only odd days off over next two weeks. Hospice wasn't happy as wanted her out sooner. The home has had a bad reputation in last few years and was in special measures but new owners and this new manager have swung it around. I hope!
A couple of professionals have also said to me they have patients there who have settled well but they of course can't recommend. They told me this after I made decision. I've also been able to speak to some family members as they have a relatives Facebook group.
I'm hoping that after the initial few weeks of adjustment Mum won't be so upset and distressed and that this works out for the higher good as man we sure deserve a break in our luck. For those of you who have had to make the sort of decision , it is so tough!
It is going to be a tough adjustment for me also and I feel so guilty and failed her.
Thanks for listening. I've done a novel again.
Hugs to all x
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Spiralsparkle
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I have just read your post and I'm in floods of tears. It's so sad. You haven't failed your mum sweetie It's just all got too much. Your a wonderful daughter and carer. I am so sorry. You have fought so hard to keep her safe and your love for her shines through.
I agree so much with Lynda what situation to be in, feeling really sad for you, don’t these people realise that you are going through enough with psp without all this. Yes you have been a very caring wonderful daughter. So happy you found a care home for your mum that you are happy with fingers crossed all goes well on Wednesday. Sending you a big hug Yvonne xxxxx
Wow Spiralsparkle what an absolutely heartbreaking post and one that I sadly identify with!
I know that the care and homes in your area is a lot worse than in Surrey and I’m appalled by that, makes me so so angry and upset!
However, be clear on this darling, you have NOT failed your mum in any shape or form! You are an incredible daughter that has worked tirelessly for your mums care! Actually that is bloody admiral! Not every child would do this!
Be clear on this too, I know and understand EXACTLY what you are going through and it is absolute shit!!
My love goes out to you both and I pray that this will be the new comfortable home for your mum.
This will not be without problems, that’s a guarantee but you just have to keep kicking arse as necessary!!
Thanks Spiralsparkle yes I know you remember! Sadly it was the only decision as Mum could no longer care for Dad and I couldn’t do it on my own, so look, I’ll put it like this, of course Dad would rather be at home, we’d rather he was at home, but it just wasn’t and isn’t possible, the care my dad receives there is way better than we could provide. That’s such a difficult question because no one wants to be in a nursing home but sadly sometimes needs must, breaks my heart for everyone in this situation x
Failed her you haven’t. You have done everything you could do. Larry’s mother Julia didn’t want to be “put away”. At 94 with Larry no longer able to be of any help to her with his PSP his cousin Barb stepped in and after a major effort to keep his mother in her apartment Barb had to throw in the towel and put her in a care home. Julia liked it. She was watched after for the next 6 months. She died June 1st. Three weeks short of 95.
A nursing home is a very hard decision to make. Eventually it is made for you. I will keep Larry home as long as I can but I know at some point I won’t be able to do the care giving any longer.
On his next home visits from his doctor in September I’ve asked that hospice be discussed. He doesn’t need it yet but at some point he will.
Spiral you have been and still are a great daughter. You have done as much as humanly possible for your dear Mum. I am amazed you managed to get the Manager and her key worker to meet you, I presume she will take care of your Mum? So far so good! Just keep an eye on things but the Manager sounds very professional. If they spoil your Mum she will be happy. We all need spoiling at times? Good luck and keep us informed?
Yeah the manager appears to be like a breath of fresh air.compared to the majority I crossed paths with. She even gave me a hug when I ended up in floods of tears.
When she came to do her assessment, Mum had made it known she thought I didn't care about her anymore and it was my decision that she couldn't come home. It just breaks me in pieces knowing that is what her mind believes.
When I went back a second time to see the nursing home and see if other rooms were available as didn't feel the first two shown on first visit were right. The manager asked me how Mum was and I told her low and distressed. She said if you want I can come back out and bring one of the lead nurses with me who I think will be best suited as her key worker. The nurse will be the lead in Mum care there.
I also thought that was a big tick, this home was the only one who didn't go into the financial side of things. All the others asked first off how is she funded.
The manager also said to me my Mum has had two strokes and it is so horrible to watch them disappear in front of you . She said soon I know I will be faced with this same dilemma and I'm making the home the best it can be and I'd have my own Mum live here. We don't always get it right but we are quick to learn.
Sure will be tough after caring for her for so long, hard to hand it over but as someone has replied I can go back to more daughter role.
I'm glad you have found a home that seems to be good. Even though that was not your first choice. Is it near enough to get to easily? Though that is probably a secondary consideration.
It's all hopelessly weird regarding the CHC and social services. Having said that reading of folks experiences of the CCGs it's almost as if they are in a parallel universe now. One with no adherence to regulations at all. Apparently quite a few NHS trusts have red flagged themselves as liable to exhaust their budgets and overspend. Grim days.
You haven't failed her at all!
Allowing our loved one to go into a home is always a heart rending thing with lots of guilt around, "If I only did more." and "If I was only better." I went through this, I think many of us do, but after a while I saw that the home was able to provide much better overall care than I could. It did require quite a close eye and lot's of chats from me to get them on the ball though. I believe that's common experience too.
Thanks so much for updating us. You have been in my thoughts.
The whole system stinks and we are at a crisis locally. Both the LA & CCG declared that in a meeting. The LA have 60 care packages to cover and can't and the CCG had 8 end of life cases they had no care for. They said it had been the worst it has ever been. They also said nursing beds won't be available as being filled fast.
Exhausted beyond belief. My brain feels like it doesn't even exsist anymore.
This home is actually the 2nd closest to me out of the ones I visited. There are only two in our town with overall Good CQC rating. The other one I wouldn't put a dog in there, it was like a dungeon. Also one of the most expensive. They have a new dementia unit though that was fab but they agreed was not the right setting for Mum.
The home Mum is going to has a dementia unit on the ground floor so if the cognition becomes more of an issue they have expertise in the building.
I said on all the visits I did I will be keeping a very close eye.
Oh my... what a terrible time you have been having, but don't ever ever think that you have failed your mum! You are fightingfor her and what's right for you. Stay strong, I would give anything to have my mum back, so you keep doing what your doing. Take care. Xx
No-one reading this site could ever think you have failed your mum. You have faithfully pushed every boundary and taken every measure to keep her safe and ensure her best care, and that is what you are doing now.
You aren't responsible for her disease, her genetics, her longevity, the state of the National Health, the local community resources or so many things out of your control, that all have come together in this moment to create her situation. You are, as you've always done, being the most loving and faithful daughter ever, and you'll continue that, no matter where she resides.
Dear Sparkle- don’t start the “If only I were better...more patient...did more...” I’m sure you did that. You were patient, caring, and did the best you could every day to care for your mom. You can’t be a caregiver 24/7 and stay sane, much less awake. But there comes a time when you need to become the daughter again. When the caregiving becomes too difficult physically and/or mentally, I think you chose a good place for your mom. They are definitely thinking about how they can help make her transition easier. P
The caring hadn't been too difficult , it has been forced on us as there is no company with capacity locally to cover her care package. The hospice said her needs can still be met at home.
I have to try to believe everything happens for a reason and it will be for the better but right now I'm angry at the whole damn system.
Dear Spiralsparkle, I do not post very often now but always read the daily posts. I do know that those of us who have cared and still care for our loved ones always feel guilty it doesn’t go away. I cannot tell how sad I feel for all you and your mum is going through....sheer hell.....so unfair. I can only add my thoughts are with you both and stay strong. Love and hugs to you Jxx
It’s so sad thinking of you as know what you have gone through and are going through the day we placed Mum in the home I sobbed all day and the next I now accept she is safe and her needs are met and hopefully your experience will be same keep smiling you are a superhero x
It is another transition to adjust to that we both aren't wanting to have to do
Hope your Mum is doing as well as she can be x
Oh Spiral, I think you are a wonderful daughter and your mum knows that really. I guess in their situation we would all 'kick' a bit.
Even the right care package enabling your mum to stay at home could breakdown.
I promised I would keep my brother at home as long as possible but sadly we would often find his care package had failed him. At times we would find he had not had any lunch/dinner or the first drink of his day was 11am, due to carers unable to visit for one reason or another.
Sadly, like you, we had to find a home where he would be safe and cared for when we couldn't be there.
John was angry and sad and I felt very guilty.
Over time he settled and I realise now that he is in the best place for him, somewhere he will be safe and cared for, as this dreadful PSP takes over his body.
Your battle isn't over, but one step of it is and rest assured you have done the best for your mum.
Dear Sparkle, what a nightmare scenario, you just can't let them go into a home that you don't trust but it sounds like you have found a good caring home for your dear mum. Ben only had respite care three times before he died, two different homes as we we ere banned from the first because I arranged for different visitors to just pop in to show a familiar face in a strange environment for him. ( I was visiting sons and grandchildren) the staff seemed to think I had sent in spies which was never my intention. The second home was a wonderful place, the manager did a home visit and reassured me that visitors would never be viewed as spies, the staff were more than happy to listen and act upon things that I advised were good/best for Ben, e.g. He didn't like going to the dining room at mealtimes and was fed in his room, he didn't like being in his wheelchair for long periods and they provided a recliner chair. These were all things that were critical to him that the first home didn't adhere to. They also gave feedback of his day in a manner that showed they really cared and one of the nuns who helped nurse him gave him a big kiss when he left. It is so reassuring when you feel they have their patients best interests at heart. I was never sure that I would be able to keep Ben at home permanently as he progressed (luckily that was the case) but would have been happy for him to have gone into that nursing home if I wasn't able to cope. I hope you have the same experience with your mum, it sounds very hopeful to me.
I made contact with a tv journalist before Christmas giving him an outline at the appalling way G had been treated with CHC etc, I told him I would be in contact again once I had got my head straight afte G’s death. I am only just thinking about it now, as I feel I could blow the whole thing open without using inappropriate language.
I’d like to know the county too to be prepared for what I hope will be later rather than sooner, but who knows with this disease? I really feel for you but don’t beat yourself up , you can only be as good as what’ s available. The sooner this government realises there is a desperate need to sort out social care issues urgently the better. I never realised the problems were so acute till this disease grabbed me and I found this site.
Your mum has been so lucky to have you fight her corner.
Hi there, I so feel for you. I too was put into a position I did not want, told Leon HAD to go into care, from respite, they needed his bed,????? I went to 2 that had vacancies, 1 was atrocious in a hospital with shared bathroom down the hall, 4 bed ward, with curtain separating each person. It was horrid. The 2nd was in a dementia ward, Leon had a brilliant brain. It also absolutely stunk. I was dry wretching. Crying and driving got a call to go to yet another one, and at this stage was totally a wreck. Amazingly it was THE ONE. I really had no choice. However, they had to interview another possible resident and would phone me, thank goodness Leon got accepted. He went into care against his wishes (however, I could no longer care for him) on 4th Feb, 2018, passed on 16/06/2018, it was a lovely care facility, sure still had a few issues, but I guess it happens everywhere. I now volunteer at the facility 2 days a week to give back, it makes me feel good. Fingers crossed for you that it all works out for you and your Mum. Your care for your Mum is amazing as are all the carers on this site. It is not a job we would chose but do it we do. Massive Hugs Marg H Howlong N.S.W. Australia
I'm so pleased you were overall happy with the nursing home you chose.
It is such a turmoil. Today is the day she is transferred and we were both in tears last night. Also some of the nurses were as they aren't on shift today so we had go say our goodbyes.
It is wonderful you are now volunteering. What do you help them with?
Hi there, I help with taking them to entertainment at the local club, also happy hour, which is such fun, they get a beer, wine, port, or sherry, or of course lemonade or punch, and lots and lots of nibbles. I danced my heart out with them on Monday, it was so much fun. Some of course are unable to get out of their chair, however I still dance with them whilst they are sitting, they love the music. Also reading the newspaper for those that can no longer read. And just talking as lots of them don't get visitors. I get so much out of it. Hugs Marg H
Do not place the burthens of failure upon your shoulders. With this disease there are no failures that are attributable to loved ones. That your mum is in a nursing home still means that she needs you there. For any person in a nursing home it is critical to have an advocate and a loved one who regularly - daily if possible - visits to ensure staff know that the patient has eyes and ears. My best to you and your mum. It's difficult. I cared for my mum at her home for 5 plus years until she passed this year from PSP. Tough it was but I could nothing but ensure she was safe, clean, engaged, and well looked after, and in a place that was her home. Not all have that choice and so plan B is called for.
She so wants to come home and we were both in tears last night. I want her home too. That is what is the toughest part the decision wasn't ours.
We have a tough few weeks ahead whilst she has to get used to the new environment and staff. I do keep telling her I will always be there as her voice. She is very scared.
Pleased you were able to keep your loved one at home..
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Update on how well my mum is doing since leaving hospital 7 weeks ago 😁
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