I am tired and struggling to cope with this downturn in Keith's mobility as it doesn't look like improving. It's 3 weeks until we see the Parkinson's Nurse next. I hope we can struggle on until then. Whilst we have not, in writing, had a clear diagnosis of MSA (Multiple Systems Atrophy) it would appear that is what he has - the Consultant said it was certainly not straight Parkinsons, but Parkinsonism. Keith has all the symptoms of MSA and this disease doesn't respond to the Parkinsons' drugs, or only marginally. It is a very rare disease. To have it in combination with the underactive Thyroid is even rarer. Poor Keith - every night this week I have worried whether or not I will be able to get him up to bed. I have found (only this morning) that there is a special MSA site, and this has been very helpful. However, the "need to drink at least 2 litres of water a day" is not going to impress Keith. I am struggling to get 2 pints down him these days!
Part if a stall which had some nice things, but they'd have done better displaying it on tables and stands . . .
There are other BIG family worries too, and those are hanging over us like a Sword of Damocles until they are resolved. The timing couldn't have been worse and it may have huge repercussions. I have no-one I can share these problems with either which is probably the worst thing of all. If my best friend Trish had still been alive, I could have poured my heart out to her, but she died a few years ago now.
As I prepare for the Fair, I am seriously thinking this may be the last one. I can manage a one-day Fair, but 2 1/2 full on days, where you have to be there at a specific time and aren't allowed to leave until a specific time are not really doable now. I have Tam and Jon to help this weekend, but the writing is on the wall. I started the day exhausted last year - how will I cope with getting Keith up to and into bed - this took nearly an hour last night. Ah well, I will just have to cope and at least I can sit down during the day at the Fair.
I can only hope that the day improves - I've just burnt my toast and the thick cut back bacon I bought is inedible and so I will have to put it in soup or something.
Oh, and to make matters better I can't even go for a good walk to shake off the blues as it's p'ing down with rain! Right, at least I can do some sewing -I'm folding over the end on the blanket I bought, as both ends had lost much/all of the blanket stitching. I'd blanket stitch them afresh but of course, I have lost the card with JUST the right cream wool to edge them . . . Sorry to moan. Off to Llandod for wool methinks . . .
Ohh, I'm so sorry to read all this I can only imagine how difficult it is trying to care for Keith as he deteriorates. I know what it was like with mum. She had Alzheimer's I never knew what one day was going to bring from the last never mind. Never mind what each moment would bring. I hope you enjoy your fair and I hope you do well, especially. as it might be your last. I do hope you've got an inside pitch as well. You don't want to be outside in the inclement and fickle weather.
ReplyDeleteThat first picture you were right, she would do so much better with a proper display on the table, even just. a cursory glance over it, and I'm rearranging items on that table. some lovely things on it.
I have an inside pitch. Had a great outside one before 9 on a corner, and got folks coming in and leaving, but the gazebo kept trying to launch itself, so it was a bit fraught! Inside is better and we have lots (too much really) of room.
ReplyDeleteI can only go day by day with Keith, but I have found the MSA Trust pages this morning and those are being very helpful. They have said "2 L of water a day" which is what I have been saying all along, but would he obey me?!!!
Indeed, I think properly displayed those nice items would look wonderful. I could do with a couple more tables myself, but a bit late to invest in any more now. When I am feeling more positive I shall return to the idea of having a Unit again, in Leominster if I can. Will go there next week and enquire.
Sorry that nursing and caring for your mum was so difficult. I hope there is someone to care for you Debbie.
So sorry BB. I am wishing you a successful and profitable fair (let us know how you fare!) and I think a unit at Leominster sounds like a really good idea - especially as we’re coming up to C’mas! You never know, Monty Don might even pop in! Look after yourself and let the young folk do the heavy lifting. Sarah x
ReplyDeleteI'm not surprised to hear you're feeling very low - you and Keith have such a lot to contend with without additional stress. Take care of yourself x
ReplyDeleteAlison in Wales x
Belle, two slight suggestions from someone who has been there, Write a letter to Trish. Burn it later or keep it to reread in better times. Writing is a good way to pour it out. And have you thought of a daybed for Keith downstairs? It can be a temporary situation. Thoughts and prayers. Julia
ReplyDeleteSorry to hear Keith's progress. Three weeks is too long, especially now.
ReplyDeleteWhat about your District Nurse? I know they won't be a specialist, but they can get things moving more than maybe you could..get the Parkinson's visit much sooner to start with...
Pirate met the regular District Nurse properly yesterday..a no messin' farmers wife...as someone else out it, she is "just what the doctor ordered"...read all his notes before coming.....and will be speaking to the right people....
So perhaps?...
You moan away all you like. You have such a lot on your plate at the moment and we are very good listeners. X
ReplyDeleteI am so sorry to hear how bad things have gotten for you now. Is there any way that you can get a bed downstairs for Keith, at least that would end one problem. You must be at your wits end with it all. Getting him to drink more water would be a good start to things, having it slightly flavoured might help.
ReplyDeleteI would definitely have bought the enamel ware pieces off the second and third photos ... and a few other things as well. This is why I daren't go anywhere selling vintage at the moment ... I keep telling myself I AM TRYING TO SAVE ... I don't always listen. :-)
I was going to suggest writing down your thoughts about the situation you find yourselves in, burn it or shred it later, but believe me it helps. Although I'm fortunate in having a very good friend to off load onto as she does to me. I have had to tell my OH to drink more water as he's getting cramps at night only for him to say I drink tea and coffee, but its not the same I say. Do hope Keith improves, could he sleep downstairs possibly for a bit or would you be worried with him being on a different floor. Sending love and hugs and hope you sell lots at the Fair. Gill Xx
ReplyDeleteThis may have been suggested before, but have you considered a stairlift. We had one installed last year, when my Partner had his leg in a leg brace for 6 months. It was certainly cheaper than we thought they were, and was worth every penny. It meant he had the freedom of the house and not just restricted to the ground floor. Janet (Cardiff)
ReplyDeleteI'm so sorry it is not going well for Keith. Getting in to see specialists can be hard everywhere now. I hope his regular doctor can help. Writing a letter to Trish, as Julia suggested, may help you cope? I write my sister who passed away when I get too sad missing her. It helps me. I think you should write here whatever you want to say, we'll all listen.
ReplyDeleteThat was from Celie. I think I solved my anon problem.
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