daily visits to Frank

[kay1]

Just returned from my daily 2 1/2 - 3 hourly visit to care home where Frank has now resided for fourteen months. He had just finished breakfast so we had a cup of tea together, then went to his room where I gave his teeth second clean of the day, after reading the paper together we found our way to the garden where we enjoyed the sunshine. This is the fourth year since diagnosis, he is 90 and seems to go from strength to strength. I struggle to understand what he says to me but he still talks as much as ever! and confined to the wheelchair. This is not the ideal situation for us, but the daily time we have together is quality time, enjoyed by both of us. The decision was made for me for Frank to go to care home by the hospital. He was in such a poor way and I really thought I would never see him out of bed again. It is not always idyllic but at least I know he has good care and staff are always friendly and take the best care of him.

[clara]

Dear Kay

Thank you for the post about the visits you make to Frank. My mum went into a care home 4 weeks ago today, after things were becoming more and more difficult for me to care for her at home (I am her daughter, aged 32), and she was slipping out of bed and her catheter constantly leaking and coming out due to her night disturbance-she acts our dreams and cries out. The district nurse felt the time was right for her to have 24 hour care. The home is one recommended by the hospice and as she is on continuing care, there were no questions about payment or funding, the doors just opened and she was welcomed in. She looks well cared for each time I visit (about every other day as I work too in a hospital and cant visit daily). her room is clean and the nurses are on hand for the constant catheter problems, changing the sheets and washing the soiled clothes and bedding is not such a problem in the home as it was for me in our flat, constantly trying to get sheets dry. I have been very sad for the last month that it has come to this - mum is only 71, but as the days go by and we both accept the altered situation, it becomes easier to see that she is in the best place. She is now no longer sad when I leave her and is joining in activities in the home during the day. Her friends go to visit often and we all sit outside in the garden and have cake and tea.

I am glad that Frank to is being well cared for and that he has you to love and support him, Keep up your good work of visiting and showing him that he is not ever forgotten.

Much love

Clara xx

[MummaMia in reply to clara]

Hi Clara, mum has PSP diagnosed last year, she is 65yrs old. I work full time and look after her any other time. Where are you located? im in australia. I am strugling to get extra hr care for her. And for that we still pay. They now are pushinf me to send her to nursing home even they hesitate to take her on a weekend. I havnt had a day to myself in 4 months. I cant even get hospice at home on a weekend. I need a break but cant bear to leave mum in a home. Should i try it for a week? what things should i look out for at these homes? what questions should i ask them? im going to check one on monday. Can you or anyone help? XX Mia

[kay1]

Clara - I am so glad your mum is settling in, there are days when Frank lets me know he would like to come "Out" but I am now sure he feels more confident where he is, I explain that we have stairs and no room for wheelchairs and he would sleep as much at home as he does in the afternoons. I go each day with a little anticipation, there have been days where he has been agitated but when that happens I ask the staff to check his urine, usually a sign of infection, the Dr is on call and it is sorted out quicker that if we lived together. I think Franks has the slow progression PSP, he wanted me to change the "tablets" in his hearing aids this morning! Good job I knew what he meant, although the right word wont come to him he is finding alternatives!

take care

Kay x

[jillannf6]

h KAY AND CLAIRE

SORRYtha tFRANK AND ROSEMARY r both gone in care homes

but it is easier for the patient and carer when the "a t home" principle no longe rworks

i too think i hav eathe slow version fo psp = frank is good for his age and although rosemay is only 71 none of us has a givne timem on this earth

i know tha t i might have 3/4 years when on dxs i thought only 2 so am glad about htat

lol jill

[Hidden in reply to jillannf6]

jill, I think your great attitude is the fuel that keeps you moving through everything!

[kay1]

always good to hear from you Jill x

[HannahDaykin]

Love the pic Kay!xx

[Hidden]

kay1,

I also love the pic! It seems like everything is peaceful and loving and you can enjoy each other everyday. Thanks for the inspiration today. We sometimes just need a little good news to share as so many of us have only sadness during all this. Bless you for making us smile.