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Result!!

Thank you to. Marie and Kate for spurring me on. Bit between my teeth called the Hospice and explained things pretty tough since discharged. Dreadful sleep, more falls and low mood. So a physio assessment today which very succinctly demonstrated reduced stamina and appalling balance bless him my hubby fell twice with the physio could have hugged him for falling at the right tine 👍 So he gets a small reprieve and he can attend hospice day centre again once per week for 6 weeks. Enormous relief- I know we will go through the same process again but the breathing space is much needed.

Thank you so much. Sometimes when we are so knackered can’t see the wood for the trees we - well I mean ‘I’. need someone to just spell it out to me. Ask for help and keep asking - doesn’t come naturally but sometimes it works!!!

Love Tippy

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Tippy I am so delighted for you. As you say sometimes it works? Your poor hubby. He fell twice. Did you tell him to? 😃. Thank goodness it was then rather than later? So a six week reprieve as you say? At least it will hopefully cheer him up to go back again and it will give you time for yourself? So glad for you both. Fingers crossed it all goes well.

Hugs to you both too.

Marie x x

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Hi Marie

It is a breathing space. Though because of the falls I have to stay with him for the day. Haha I didn’t tell him to fall - he lacks any inhibition these days so he would probably have spilled the beans. Though I had to suppress a smile when he fell the 2nd time after the lecture the physio had given me on how to prevent falls and asking me how I got him up after a fall!! Fair to say physio approach didn’t work - I did eventually take pity on them both and demonstrated how to get him up safely!!

Thank you for spurring me on, so easy to just try and get on with it!! Really appreciate your support 😊

Love Tippy

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Tippy don't you just love it when you know more than the 'experts'?? Would love to have been a fly on the wall as you showed her how to do it safely! Thanks for the smile. Feeling very down at present so all smiles welcome!

Marie x x

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Sending lots of love and a big hug. Hope today is a better day.

Thank you so much for your support- you are amazing reaching out to others whilst having a rough time yourself

Love Tippy

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Dear Tippy it usually helps. Makes me think of how everyone is trying to do their best. I am full of admiration for you and others like you who do amazing things each day.

I am feeling down because there is a service tonight for the recently bereaved. They read the names of those who died recently and you go and get a light which then goes on the altar. Then when it is full of little lights the main lights are gradually dimmed until they go off. It is very beautiful and moving. We went last year. This year I made a mistake and told my kids and Granddaughter it is tomorrow when in fact it's this evening.

My daughter sent me a text saying she couldn't manage it but hoped it went well! My Granddaughter hasn't replied which is not like her. I do know she has an acting class this evening however. My son says he is going out for dinner! However I had a text this morning to say he would collect me and take me there. I am dreading being alone tonight though. It feels like a mountain to climb right now! Silly eh?

Marie x x

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Dear Marie

I have been thinking of you and hope the service was as calm and supportive as possible- though inevitably it must have been so incredibly sad too.

Sending lots of love and a big hug

Tippy

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Dear Tippy, Cuttercut, and Granni B thank you so much. I am still breathing! My son and Granddaughter came with me after all. I can't tell you what a relief it was. There was an empty seat beside me where you were sitting Granni B. X

When I was in church which as packed I saw a man go up to light his light for someone. I noticed he was alone and he looked so sad. Afterwards some of the congregation stayed behind for refreshments and he was standing there alone. So I went to talk to him. He has lost his Father, His wife, His Brother, and his daughter in the past 5 years. I was stunned! No wonder he looked so sad? He has a son who has autism too! We just chatted and I told him about PSP/MSA/CBD. He had never heard of them and he's a doctor. I did explain what the letters meant and he understood what they meant thankfully.

Then the priest came to talk to us and he is a character. He wanted to know how we knew each other. Did we go to the same pub?! Anyway I said we didn't know each other. Told him I thought how sad he looked and he was alone. That last point was particularly important. All I could think was that could have been me! The priest very kindly told him who I was!! Do you think he was trying to matchmake? I only heard his Christian name and that was it! He seemed like a very nice man but he is going through so much I don't know how he is coping.

So a very weird ending to it all. I do tend to talk to people who look sad so be aware! You might be next!! 😃

Marie x x x

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Dear Marie

You have a big heart and a generous soul. To notice someone else in distress whilst you have all that pain is a sign of great compassion.

Sending lots of love to you

Tippy

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Tippy thank you for those kind words. I just wish more people reached out and were kind to each other. It would make everyone's lives just a bit more bearable?

Marie x x

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After years of care giving who doesn’t know more than the “experts”. I get more useful information on this site then from the doctor.

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Granni B I certainly need those thoughts of yours. I always feel alone but today it feels worse. God knows what tonight will be like? I am dreading it so much. I shouldn't be as I know what happens, it's just this feeling of being alone. I don't have a large family and so called friends suit themselves.

One who I would have asked is ill herself. She has Dementia poor woman. I will have to find out what is going on as it must have become worse since I last talked to her. Her husband is keeping it secret, goodness knows why? Everyone that knows her has figured out ages ago what was wrong. Life is so sad isn't it? She is such a lovely person too. Maybe it's nothing to do with her Dementia she could be ill with something else at the moment?

Hugs to you and thank you for your kindness.

Marie x x

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Don't this has gone to you Granni B so read down to the reply I sent to Tippy. It was meant for you and Cuttercut too! Love and Hugs to you.

Marie x

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Granni B thank you for such kind words. I had the luck to have a lovely Grandmother and Mother. Both reached out to people in trouble. As a little girl I was always told to be kind to people particularly the elderly. I sometimes look around and wonder what has happened to the World. Where is the love and kindness that helps you get through the day? Sadly it seems to be a case of everyone for themselves now?

Granni B do you live in Northern USA or Canada? Sorry if I have asked this before! It has to be one or the other with snow already? I love to look at snow but hate going out in it! I don't blame you for not wanting to go out with your walker! Sensible lady. You don't want to break anything?

You just take care of yourself and stay warm.

Love and hugs to you.

Marie x x

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Granni B if my Granddaughter is an example then I think it might be. She is so kind. She stays one night a week with me. Usually Saturday but sometimes she switches to Friday! We get on well together and I love her to bits.

My little Grandson is also a kind little person but I seldom see him anymore. My daughter is always too busy, so that means I don't see him very often. It breaks my heart but nothing I can do when she won't explain what is wrong? I hope he realises I love him though. I have only seen him for 2 hours since July. Apparently he is coming to see me on Christmas Day to get his presents! That's what he said anyway!

I haven't been invited to her house and don't know where I will be on Christmas Day. Unless my son invites me to his I guess I will be home alone?

Take care in Illinois. Keep your snow😃!! If you want to make a snow angel don't even think about it unless you have some help to get back up?

Hugs to you.

Marie x x

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Don't you just love how you get real life advice as well as encouragement and loving "pushes" from our fellow members? What a great group this is...and particularly the very experienced Survivors, who contribute so much...XXX

Anne G.

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Absolutely - this site is a sanity saver.

Love Tippy

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Bless you Tippy!! You definitely need the respite hours where you can!! Your amazing carrying on as you do but you absolutely must have some time to re charge yourself! X

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Hospice will not be respite in classic sense in that I have to be with my hubby. Too many falls, too impulsive for them to manage!! But if it lifts his mood and improves his 💤 😴 I will also get more sleep which has to be a good thing all round!

Hope you are OK too

Love and hugs

Tippy

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The days when John went to the Hospice were bliss. I could have a cup of coffee etc without worrying he was going to try and get up/fall etc. Just enjoy the six weeks. You have done so much better than me keeping him at home xx

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I used to enjoy those days too, I would meet a friend for lunch it was 5 hours of indulgence or manic domestic chores!!!

You must not be so hard on yourself you looked after John until your wrist injury made it physically impossible. No one could do anymore - we are all human.

Sending lots of love and a big hug

Tippy

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John loves to go out and I do try quite often but I am finding it more and more difficult to transfer him from the wheelchair to the car etc. He just freezes and cannot move his legs. There is a wheelchair taxi but that just goes from Ato B and John does like to look at the countryside etc. Also he has virtually no speech now except yes and no. Xx

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What about a cinema trip?? Wheelchair Taxi can take you there and back and hopefully no transfers for you to negotiate. My hubby loves the cinema now and he stays in his chair - we forgo the popcorn though!!

Take care

Love Tippy

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Tippy I had not considered that, thank you xx

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Well Done Tippy! I had this fight all the time with the Hospice. Eventually, they agreed, whilst he had to take his 12 week break, he could come back after that. Sorry you have to go as well though. I know how I use to love that day. The Hospice was only a mile from our Shopping Mall, so lunch and flexing the credit card was called for. At least you will have a day of being looked after yourself. Perhaps the "odd" nap in one of their comfortable chairs might show how tired you are. See, those drama lessons at school weren't a waste of time. Not for one minute do I think you will have to fake it!!

Sending big hug and much love

Lots of love

Anne

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Heady you are giving me ideas. The thought of a short nap in a recliner is very appealing- might have to try that one out!!!

Love Tippy

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Congratulations on getting him back into day care to give you a break. How cooperative of him to fall. The universe was on your side. The squeaky wheel gets oiled as they say. Keep squeaking.

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Oh Jeff normally I hate falls but on that day it was like a godsend underlined everything I was saying so beautifully!!!

Hope you are OK and getting a little sleep here and there!! 💤 😴

Love Tippy

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Good news. Every little bit helps even though it’s so difficult. I’m glad they saw “it” in action. They often don’t understand or believe us. Bless you.

Cuttercat

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Pleased it has spurred you on Tippy, it's strange how some hospice seem to have this 12 week thing going whist others offer continuing daycare twice a week. I wish there was some consistency across the NHS and charity establishments along with consistency in funding. See you have lots of lovely catch moments in reply to your post.

Love Kate xxx

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