Last night, two of our grandsons,4 and 7, stayed the night. This morning the 7 year old came into my bed very early and started asking questions about Colin's illness; how did he catch it? Will he get better? What will happen next? And many more. Then he said, " never mind Nanna B. I know he doesn't talk to me any more but he is till my grandad.
This afternoon I was playing Happy Families with them. Colin was behind me in his chair. The 4 year old slid down from his chair, took a tissue from the box and ran to Colin who was reclined, eyes closed and nose running. " Don't worry grandad, I'll wipe your nose"....and he did. A tear ran down Colin's cheek, and mine.
Nanna B
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NannaB
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They have their moments but they are normal little boys. I removed the plug and controls from my husbands hospital bed for safety reasons but someone put the plug back in and I found him using the bed as a slide having put the foot to it's lowest and the head to the highest. I said," Hasn't mummy and daddy told you not to touch plugs as it is dangerous?". His reply was, " yes but that's our plugs not yours". Last time he came, the 4 year old said, "Nanna B, do you know what I am". I told him he was a lovely little boy. His response was, " No Nanna b, I'm a catastrophe, but a nice catastrophe". Quite a good description I think.
Oh yes kindness makes us feel so emotional. We had a routine visit to the dox and I always try to be humerous because sympathy is so hard to cope with maybe he thinks i am delusional or heartless. Earlier Des had a choking fit and so I busied myself in his room to keep an eye on him, after choking for some time he commented what am i looking at next?I was thinking possibly a peg but I asked him what he thought and he answered "You might get out the vacuum then the carpet shampooer" I must try not to see deep meaning in his whispered comments!!He was fastidious a few years ago NOT NOW How would he cope if I had PSP and found he had to mix and match bed clothes for me he would worry but for me all clean means all matching! Good on your Grandchildren NanaB Px
I'm with you and your mix and match bed clothes. Tops and bottoms of PJs rarely match but I do try and match duvet and pillow cases as my husband now sleeps in our dining room so visitors end up walking through it to the kitchen although there is another door they could use. I bought 2 identical sets so it's easy to match. Tomorrow we have an appointment at the hospital as the Hospice want my husband to be fitted with a PEG now rather than later. He appears to choke more when he is at their day centre than he does when he is with me. Drinks cause more problem than food at home as I liquidise and mash but as I've read on this site before, it's better to have a PEG fitted before it's needed rather than leave it too late making it unsafe to operate. I'm not looking forward to it though, and I'm sure Colin isn't although he put thumbs up when they asked him if he thought it was the right time. It's interesting your husband mentioned the vacuum cleaner. My husband has very poor eye site now but he can still see the tiniest little bit on the floor. He has had several falls trying to pick up bits. I'm sure your doctor doesn't think you delusional or heartless. If he does, ours probably thinks the same about me.
Thank you NannaB it was a good day. A friend came to my house with a prepared meal and looked after Des while I collected my new glasses and did some shopping.I now shop on line which is useful but lovely to look around real shops.Next time I shop for bedding will remember to get 2 identical sets Des told me he had a conversation with my friend but couldn't remember what about Bless him he still has a sense of humour and as he freezes quite often we thought we might go into Bath (10 miles away)and spray him silver and collect some money,he is very amused by this thought of standing in the abbey churchyard making money.I do feel more sorry for the chaps in our place perhaps I' wrong but think it would be less natural.Take care Hope you have good days,Px
I'm doing a bit better each week. Still have those moments of tears and probably will forever. I go to dinner with friends and my art class. Thanks for asking. how about you?
We are still taking each day at a time. Colin's progression seems to have speeded up over the last few weeks. Tomorrow we are going to the hospital so he can have a pre assessment for having a PEG fitted. We still try to do something interesting every day. Today we had beautiful Autumn sunshine so I took him for a walk and saw several folk we know. It's getting harder for me to transfer him now so the OT is coming tomorrow as well. The ukulele group was here yesterday, he came with me to play darts last Thursday and he still goes to the Hospice on Fridays. It takes three people to transfer him there, one on each side and one holding the walker they get him to hold when he stands.
Great attitude of one day at a time. Yes, there are points when PSP seems to move slow and times when it seems fast. Have you thought about requesting a Hoyer lift for transfers at home? We finally got to that point the last week of Sharyn's life. She got so she couldn't stand and at that point we used the Hoyer lift. Hope you have a great week in view of the circumstances.
Hi wifemo, it's good to hear from you. I hope you are OK. It's good borrowing grandchildren. I did before We had our own and it was a great excuse to do all the things you wouldn't do without children, go to soft play areas, slide down the slide in the park, splash in puddles and squish about in mud. I think when ours have grown out of " childish" things, I'll borrow some more so I can carry on doing them.
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It’s the little things …
My grandad <3 died at the hands of psp 11.4.13
Finding it hard to cope with my nan's condition 
It's been a tearful few weeks
