Today I took Colin to Sissinghurst, a National Trust garden in Kent. He had his eyes open most of the time and managed to see the beautiful spring flowers. We met an old school friend of one of our sons who was with his wife and son and Colin manage a slight smile as they gripped hands. We hadn't seen him for 17 years. The sunny day, seeing lots of happy people enjoying themselves, really lifted my spirits. There are still good things happening.
X
It looks to have been a beautiful day indeed ! Lovely photo ! So glad that you and Colin were able to get out and enjoy the day and time with friends while there . Thank you for sharing it with us !
NannaB so glad that you had such a lovely day, such a lovely photo xxxxx
Love Sissinghurst. Must make it this week. We have just got home from Yorkshire and Chris definitely benefits from company. So glad Colin was able to see the flowers. It means such a lot, doesn't it. I used to always make sure my mother saw the snowdrops, primroses and violets she loved so much. Her sight was very limited and it became more and more important to me.
Give Colin a hug from me . You can have one as well, of course !!!
love, Jean x
Thanks for the hug Jean. I hope your trip was good and you got help from your relatives.
Sending a hug to you both as well.
X
It was great. I used disposable bed pads and had no washing !!
My sisters and nieces and nephews are very loving and supportive. Its having the company which is so good. They pull their weight with entertaining. So, although I do the usual with Chris its not so onerous. As you know Chris is able to be involved to some extent, especially when he feels loved.
Welcome your hugs.
love, Jean x
Good for you Jean. I am glad you had a wonderful time . Sounds like you have a wonderful family.
AVB
Yes. We are not near in British terms ie. 240 miles away, but we are all relaxed and lots of laughing when we meet up. So I am making sure we do lots whilst Chris is still able to respond. For me it is also so good to get involved in quick conversation. That is one of the really difficult bits of PSP for us.
PSP can feel so lonely.
Love, Jean x
Beautiful photo--what a nice outing.
How lovely, xx
Oh how much i would love to visit Sissinghurst again. We had many a visit there when we lived at culverstone. Glad Colin could enjoy his visit today. We do really enjoy any small outing these days. Janexx
Yes Jane, I find any trip is worth all the effort of getting out. Did you ever go to Ightham Mote. I managed a trip there with our youngest son last Monday when the Crossroads sitter was with C. Just as well I went without C. Definitely not wheelchair friendly. A magnificent place though.
X
Yes we went a couple of times another good day out. Also used to visit the hop farm all good memories.
The best place here was flatford mill. Brian was a keen painter so we just had to visit constable country.
Seems such a long time ago. Janexx
Our elder daughter has recently moved to Ightham. We have been to the Mote several times but, as you say, not very wheelchair friendly. On Easter Saturday we visited the cafe while other members of the family saw the house and gardens but it was SO busy that it was difficult to get the wheelchair even into the cafe. Most people are very helpful though and made room for us. Must do Sissinghurst soon. We have Emmetts Garden here in the village so are fairly frequent visitors there. I was doubtful about the electric wheelchair getting up the very steep slope from the entrance (the NT have a buggy to take those with mobility problems but we can't access that any more) but it managed beautifully last time we went. It is a huge asset as I certainly wouldn't be able to push unless we had help.
We are going to Biggin Hill this morning as D loves aircraft and we are going to meet the two small grandsons and their mother there.
Glad you had a lovely day.
V x
Nice photo NannaB- we used to live in Surrey and often visited Sissinghurst - loved the white garden - so glad you can still enjoy it .
Yes the White garden is glorious in the summer. Not much there yet though. It was walking to the White garden when I first had the electric wheelchair, that I ended up sending the chair off the concrete path into the yew hedge. I was very careful not to lose Colin in the yews today. I only once missed the path today and that was because I was trying to manoeuvre around an urn without toppling it with the chair which can be a brut if it hits anything. I was looking at the right wheels to see if they had cleared the urn and the left wheels fell off the narrow "wheelchair friendly" path. As I tried to get out, I dug deeper into the newly dug flower bed, finally emerging with two very muddy wheels and leaving a deep track. It resembled a furrow in a ploughed field. Another wheelchair friendly path had a lavender bush growing over it, leaving about 8 inches of path. When I go out at home I take secateurs with me and chop down offending bushes and branches ( leaving them on the front lawns though, I don't steal them) but thought I'd better not destroy NT plants. A lady with two young boys saw my predicament, lifted the bush and stood her youngsters up against it pushing it out of the way until we had passed. The boys, about 3&5, thought it was very funny as I slowly tried to avoid chopping their tiny toes off with our brut.
All was well and the hazards added to the excitement of the day.
X
Must try to get to Sissinghurst this Spring, I always seem to miss the moment and get there between the spring and white garden. Timing has never been my strong point. Glad you enjoyed the day and the sunshine, I like to imagine in my minds eye all of the goings on that went on with Vita Savkville-West and co, probably make your eyes water even now! Ben has been in the dumps of late, think he is hearing and realising what is ahead of him. He is falling much more often and has become very quiet, hardly uttered a word today. I am having a job to motivate him to get out and about, all he has done today is watch the football and golf ( he is s massive Leicester City fan so can forgive him being glued to the set.) He shows no emotion during or after the match which seems very odd for a devoted fan. Oh how I miss having interaction with him. Feel very lonely tonight despite having my daughter In law and 2 grandchildren staying for almost a moth now, they go back to Bristol on Wednesday. I do mourn my old life but know I need to stay strong. K xx
Yes, I wonder what it would have been like if Vita and her set had Facebook, utube and other social media. Very interesting reading/ viewing I should think.
I miss the interaction with C but still tell him everything that happens, phone calls, mail etc.
Perhaps you are feeling lonely because you know your family are going home on Wednesday. They have been with you a long time. Now the weather is improving I hope you can get out more. Is Ben worried about falling so doesn't want to get out of his chair or go out, just in case? You need to go out so you can talk to others. I spoke to several folk today. Most people are very friendly and I always manage to speak to others who are on their own so feel I may have helped them as much as they have cheered me.
I hope you both have a good week.
X
Oh Katie I know exactly how you feel, loneliness is one (of many) things I feel
Love
Debbie
I read your paragraph saying to myself,, "Oh my goodness, K is writing my story exactly!" My husband does not talk, as he realizes what's ahead he is very down, can't even show any emotion for his basketball team winning the tournament or when I am in pain. I think I feel even more lonely than you. How fortunate you have a daughter and 2 grandchildren staying with you. I have no support except an occasional phone call from a son that lives 1,000 miles away and a self absorbed daughter. I, too, miss our old life of 58 years married. We were so close and did everything together. God bless you and count your blessings, K. It is a hard time we handle but we can stay strong. ej
So hard to read your note. I know exactly how you feel. We are connected by sadness and loneliness. I long for a hug from him or a caring word
How lovely was that Bev . Out of the black moments can still now and then manage to do something so wonderful . It's what keeps you going isn't it ,
Unfortunately John hasn't been up to going OUtside of the house for three years , he wouldn't be able to keep responsive for anywhere near enough . Would be far to stressful for him .
Keep doing what you are doing Bev x
So glad you both had a nice time. Our son and his two daughters met us at Hardwick Hall on Saturday. It was so nice to get out into the fresh air. We had tea and scones outside too, as it was warm enough. Sunday, we took my almost 95 year old mum out. We ate at a garden centre and then moseyed round afterwards looking at the plants. I bought a few in the hope that I might find some time to plant them without B. getting up and falling,(another occasional table bit the dust this week!)
The nice weather changes everything for the better, doesn't it? So does your lovely picture, a real delight, thank you for sharing. X
What's it like with a 95 year old and another with PSP? I remember crossing a road with C and his walker and my 96 year old dad on his mobility scooter....very funny looking back but a nightmare at the time . I'm sure they both appreciate your efforts.
For several months now, when things have been ok, I have taken C to the recreation ground at the end of our road, where we meet a friend in the football club hut for coffee and cake on Monday mornings. Proceeds go to the Hospice. I was saying to her today that I'll keep going on Monday but when sitters arrive, instead of going out gallivanting, I'll have to stay at home and do gardening. Everything is growing now, especially the weeds. She said I need to go out so in future on Monday mornings, weather permitting , she will walk to our house, calling in to buy cakes at the club house first, and after coffee and cake, we will work on the garden together so I can gallivant in the afternoon when the Crossroads sitter arrives. It's good to have friends.
I hope you manage to do your garden without any mishaps.
X
Thank you. Luckily, my Mum has many friends as she lives about 20 miles from us. I try to go over once a week. If she is ill, she has to come here. Last year, she was ill three times. She stayed recently for a week and it was lovely to see her cheerful and her usual self, although now she is rather frail. We managed to get out when a sitter came and it was lovely just wandering round the shops as we used to do before B. became ill. Usually, we go over once a week and take her out for lunch, but B. stays in the car while I collect her and take her back afterwards.
We do have some funny situations. Mum is deaf and uses an aid, but it is often switched off or the battery is down. I ask B. something and she replies. I ask her something and she doesn't answer. When we are in church, I spend most of my time helping them to sort out the hymn numbers and which book to use, whist trying not to shout . I am constantly bobbing from one side to the other. As we sit at the front, where there is wheelchair space, I hope it is not too distracting for those behind us! She has been and is still a wonderful mother and my husband is wonderful too. So I cannot feel sorry for myself as I have been very blessed to have such people in my life.
Oh, and the plants are still in the garage!!
Many hands make light work Bev . X
Oh they do. How are you doing?
X
Not v good at moment John v constipated last ten days so back and fire commode ried movicol Senna liquid Andrews salts porridge weetabix .
Waiting fir carers at moment John in his dyskinesia mode switching on and off .
D nurse due as well to go through the chc . All I got extra at moment is two hrs sits . So not happy I had asked for nine already had four .
I will need night sits and the fourth call .
Feeling uptight b good to go out for my two hr sit at twelve but worry bout the toileting b easier if in co tinent in a lotof ways
Sorry how r u
I know exactly what you mean about toileting. C hasn't been for 5 days. He has been given CosmoCol for the last 3 days but it hasn't made a difference. I had a carer this morning and told her I was worried about leaving her in case he goes as he was in bed but she shood me out of the house and told me to enjoy myself as she would cope. Nothing happened. Someone is coming to weigh him tomorrow so I hope he goes before then in case it happens when he is in the air being hoisted. He can't tell me when any more. I think he knows when he needs the commode but can't tell me. If he goes, that's the signal for me to take him out for the next couple of days. It's usually 'safe' then.
I hope you went out and did something nice. I whipped over to Scotney Castle, walked around the grounds going on a route not suitable for wheelchairs for a change. I checked my phone during the walk and realised I had no phone cover so couldn't have been contacted anyway.
Better get the washing in now, a big black cloud is overhead.
X
I did go out but only briefly by the time the d nurse called then. Friend popped her head in we were late and christine had to get back she a had a plumber coming .
The head d nurse called first thing to go through the CHC . She is arranging for the extra three hrs sits for me and the fourth call.
She has checked they not cover night sits though , the palliative care would do so she told me ,
Maybe I will try and arrange someone privately to do so now and again .
John has been very confused today . He isn't always like it . I will ask the oarkinsons nurse if there is something she could prescibe for such events , I don't want to to take Meds like that all the time . Don't know if they work like that though .
H is seeing people around him and he turned his head away as I was feeding him and asked if someone knew where Rita was ? , that's a first time for that , They are coming with a small enema tomorrow . Ones that I can do .for him . X
God does good work. Thanks for sharing it.
Ketchupman
Beautiful nannaB xx
Beautiful photo NannaB. I'm really happy that you and Colin had a lovely day. A nice memory to store up and look back on. Best wishes Nanny857 xx
That photo is unbelievably beautiful, NannaB. I keep coming back to it to refresh my eyes and spirits. thanks! So glad you had such a nice day.
Nanna, I just now saw this-how beautiful. Like they bloomed just for you. It is an effort to get out but it does usually lift the spirits. Hope he did not grip their hands too hard lol. We made a trip to the seaside last week and it did a world of good for both of us.
Respite but not respite
