I'd thought I'd post about Admiral Nurse incase you weren't aware of them. We've come across them following a referral to the memory team after Mum was in hospital in spring.
The memory team in our area are lovely but don't have much they can offer Mum as not a normal run of the mill dementia. The lady who came out said I am going to contact the dementia Admiral Nurse to see if they can support you or not. Turns out they can as I had the head of the team here today. She said the deal with dementia and rare neurological conditions.
As Mum has CBD they have even seen me as priority as they have a long waiting list. She said she has worked for 30 years in this area of health and can count on one hand how many cases of CBD she has looked after. They are there to support the carers and do so after the loved one has passed. She was a lovely woman and I ended up in tears talking about how I was feeling. She said she can refer me to get holistic treatment at home via Red Cross. Sheis going to see if she can get me some more support for time away from the home but said with all budget cuts it is so hard.
She is coming back end of month to meet Mum and then will come back to see me and how I am going forward.
She made me feel listened to and that I am not alone in this. Also suggested some groups like singing for the brain we could both go too.
The Parkinsons Nurse has been as helpful as a chocolate fireguard and Mum can't stand him so I just wanted to mention the Admiral Nurse to everyone as another avenue for support. She also suggested another care agency but isn't allowed to recommend one so was a cryptic suggestion but I got what she meant lol
Hugs to all.
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Spiralsparkle
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I totally agree with your comment about Parkinson Nurses in this area there are 3. We met a really nice one early on helpful, resourceful and willing to learn about PSP but she was only covering the area while the 'chocolate teapot' was on long term illness, since her return her input has been worse than useless upsetting M both visits. The nursing home only allow her access with the DN, shows their concern. I have asked for her not to visit M unless I am there. Sorry to vent but some Nurses are very good but a few are useless.
Yes it is amazing how different people are doing the same job. Like night and day sometimes. There was a lady shadowing the PN at one appointment who was lovely and even said can't you do anymore to help them and he said no. Wish she was a permanent member of the team.
Thanks for that info S, I will be following that up. We are very lucky as PN and SALT are lovely and get things done,nthey are partners in crime and will try to hurry help along for us if necessary. It makes such a difference when you know someone is actually trying to help you both and will pull a few strings if they can and ask how you are both doing etc. Wish everybody in the medical world had the attitude. Glad you have someone concerned about your welfare, surprising what a difference that makes.
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Yet another potential diagnosis??
First time posting on here
