Life seems to be really throwing challenges at the moment. I heard this week that my dearest aunty - my dad's sister, and the last of my aunts and uncles - had died. My uncle had died three months earlier and she had been holding on (against pancreatic cancer) to stay there for him. She was 86 and I will miss her so. The last of those who called me by my full name, Jennifer, and I can just hear her voice now. Sadly, there is no way I can go to her funeral - it's nearly 200 miles away. Keith is so bad - balance even worse and legs barely functioning - that I can't leave that to Tam to come and deal with.
Keith's health has gone downhill so much in the last few weeks. A month ago he could walk up and down the kitchen. Yesterday he came downstairs as desperately slowly as he had gone to bed and asked for the wheelchair to be brought into the kitchen to save his energy going from room to room. A gigantic brick wall faced me - just WHAT can you do, when the PD nurse and the Dr are at a loss as to why he's like this. Keith thinks it's the 3 half tablets of steroids he took the previous week causing a reaction. I still think part of it is use it or lose it, and you are what you drink . . . Trying to get this latter fact through to him is like trying to sell snow to Eskimos . . .
I phoned Powys Assist to ask them to come out and appraise the house, with regard future needs. When she heard there was no downstairs toilet/shower, that was one thing to be addressed or else a stair lift. We discussed having a hospital bed installed should Keith become bedbound. We discussed carers coming in when he needs them. We discussed my needs as a carer, which are important too. I don't like asking for help, but that brick wall is just too high to climb without a bit of help. Anyway, Care & Repair are coming out next Monday to fit some more handrails in the top hall so Keith can drag himself along those. Any PD sufferers reading this, PD nurse has said this is NOT the Parkinsons - it's something else. I wouldn't mind betting if he was on a drip for 24 hours, he'd be like a spring lamb! But what do I know?
Looking across The Groe to the Presbyterian Alpha Church. It was set up by Howell Harris in 1747 and the building has twice been rebuilt. This version dates from 1903.
As you can see, light levels were poor yesterday. I'd worn the wrong coat too - I'd quite forgotten how the river channels the winds along it.
I haven't gotten far with the Ken Follett novel as I am so busy helping Keith - everything takes SO long. I even rashly printed off a free knitted socks pattern. I know it's very unlikely I will even get to start them (think kitten-help here - I took out my x-stitch Christmas robin last night, and managed just ONE stitch before Pippi noticed there was an interesting piece of moving red thread . . .) I keep threatening to start on my Heirloom William Morris quilt. Then the thought of all the cutting out stops me in my tracks. I need to break the idea down into tiny steps. Just ONE block would be a start.
I made another crappy curry last night. I had bought a Patak's Madras curry sauce. It wasn't very nice, and too hot (yet I used to always have a King Prawn Vindaloo when I went out regularly for Indian restaurant curries.) Another failure. I think part of it is because I don't care about cooking any more. Bung it cookery is the norm.
Counting days here (as in infection developing days) as my friend P has come down with Flu (though it could be Covid, or could be The Dreadful Cough virus which is doing the rounds). She was here last Friday. . . That's how you catch things - not from shopping - it's being in the same room as . . .
It's no wonder you are worried sick. A friend of mine went terribly weak, doctors did all sorts of tests to no avail. I was convinced it was down to his terrible, erratic eating habits. I'm wondering if there's any food that could be contibuting to Keith's problems. He might not realise it himself. I didn't find out that I have coeliac until I was 50, despite having been examined for lots of other things.. Doctors don't think of testing for everything.
ReplyDeleteWell, we had the PD nurse check out the supplements he takes and those are ok. He's a devil for NOT eating much veg and too little water too - those things don't help the internal workings. He has a VERY small lunch, always - a hangover from his Army days when he went running for 10 miles and just had an apple afterwards. His sleep patterns have been bad and I think that is a big contributor as it seems to make the illness worse.
DeleteI am so very sorry to hear that Keith is struggling so much. It must be so frustrating not knowing why. I am also sorry to hear about you dearest aunty. It never rains but it pours. I am glad you managed to get out for a walk for a short while as it is so important for carers to look after themselves too. I do hope you avoid the virus your friend P has developed and she feels better soon.
ReplyDeleteThinking of you. Take care. Caroline xx
I have to say, this has not been a good start to 2023. My aunty's death wasn't unexpected but a real kick in the gut all the same. I've just realized I've been in such a tizz over Keith I've not bought an In Sympathy card yet. I'll go into Conti's for the paper and a card tomorrow, they have a nice selection.
DeleteToday's short walk (uphill all the way, but that means it's downhill all the way back!) has really boosted me. Further tomorrow. Trying to avoid all viruses now - I was silly to invite her round as she'd been away visiting family over Christmas.
Didn't realise you had no downstairs loo - a stair lift sounds like a must-have.
ReplyDeleteHope you find a way to get K to drink more and also hope you don't catch the cough virus - it's a nasty one
OT have been in touch and suggested a bed downstairs. They clearly have never seen the Library which has turned into the Stockroom too! I must sort things out in there.
DeleteWearing my mask in all the shops, and gelling hands still and hoping I have avoided P's germs. Don't want to tempt fate though.
Please don't link both parts of what I said together. I am in no way implying that Keith has a bad diet, only that there are some conditions, like coealic, that prevent the absorbtion of nutrients, and present with seemingly completely unrelated symptoms.
ReplyDeleteHe is a fussy b*gger and would eat even more badly if I let him. If it's green he doesn't want it on his plate, and doesn't like "mucked about food" . . . He won't even eat rice or pasta for heaven's sake! We won't go there with Tomatoes or Garlic (or even onions) . . .
DeletePlease do ask for as much help as you can. When my late husband had cancer (he had it for almost 2 years) we initially didn't ask for any help but at a later stage we were very grateful for mobility aids, carers and carers' allowance. We went through hell and back, caring is gruelling especially as we were trying to pretend life was fine for our son who was taking his A levels. The stresses we went through were absolutely unbelievable. Sending positive thoughts and hope to you and your family.
ReplyDeleteThank you Victoria. I seemed to have opened a good few doors with my ask for help the other day, and that is a relief. Oh how dreadful for you both, trying to pretend everything was normal for your son, but then, we always put our children first don't we? ((HUGS)) in retrospect to you and thanks for your kind words.
DeleteSorry I forgot to add that it is very important for you to have time for yourself if only just to walk, look at the countryside (here's hoping the rain stops soon!) and have some headspace and clarity.
ReplyDeleteYou're spot on there. HOW much better I feel just for walking up the hill and back - half an hour's walk - but it cleared my head and I was able to stop worrying for a bit.
DeleteIt sounds like you are both really going through the mill at the moment. You are doing the right thing in putting plans in place for the future and getting out in nature is always balm for the soul. As for the cooking and craft stuff, well we all only have so much time and energy. Take care. X
ReplyDeleteIt's a real strain. We try to find the humour though, which helps too though I dare not share something that happened yesterday but boy, we ended up in stitches. Nature is indeed a balm for the soul and it pays to take pleasure in the tiniest things. Long Tailed Tits on the feeders today made me smile.
DeleteI'm sorry about your aunty, and sorry that you cannot get to the funeral. It has to be awful watching Keith struggle and not being able to do one thing about it. I cannot imagine being in your shoes. Why on earth won't they listen to you re: hydration.
ReplyDeleteI really did want to pay my respects, but not possible. As I said, it was one huge brick wall which I found myself looking up at but hey, I did the right thing and that has helped. As for hydration - blardy MEN! Always think they know best.
DeleteI hope you can get lots of help, accept everything that they offer, it will really help Keith. Is he managing to eat well or has his appetite gone while he's feeling so bad? Not having a downstairs toilet at least is no good, even Alan has realised that he hasn't got one, and is now talking about us moving again in the near future so he can change this, although I have offered a solution for where he might put one so that might happen instead.
ReplyDeleteThanks Sue. I've accepted two things this afternoon - one I hope we won't need for a bit, but it pays to have things in place rather than have to seek them out when you desperately need them.
DeleteWe were disappointed there was no downstairs loo/shower here but perhaps that can be sorted. We love the house and area and want to stay. Hoping that Alan can squeeze one into the house.
I am so sorry you have having to deal with so much at once. Glad, though, you are getting some help. And I hope you manage to stay well.
ReplyDeleteHi hart, thankyou. It never rains but it pours, but we have to keep plodding on. Kitten therapy is helping me at present, and I won't tempt fate, but have fingers x'd over viruses.
DeleteSad to hear all you have to cope with.
ReplyDeleteYes, tell all the health professionals...Keith is not drinking, he is dehydrated and it is urgent!!...
Not easy to have the energy to be persistent when you have all this happening though.
Sending a virtual (((hug)))
Well, he's been told enough times by the PD nurse. Perhaps it sank in this time. I am changing drinks though so he has fresh fruit juices etc and not just boring water. A smaller glass is less daunting too. Thank you for the virtual hug.
DeleteYou may find that a dash of lime cordial in water makes it palatable. Cheaper than juice all the time too...and some meds are not supposed to be with fruit juice, or fruit juice is not to be in ones diet when taking them...get advice on that!
DeleteI agree about the fluids - I can't begin to imagine what you are going through - so glad you are going out for walks. Carers need to take care of themselves.
ReplyDeleteAlison in Wales x
Hi Alison. Putting myself first today, but without neglecting Keith. The walking REALLY helps. Plus the thought the wheel has turned and we are heading back into the light and SPRING.
DeleteYes, the thought of spring can keep us going in difficult times x
DeleteAlison x
Truly sorry Keith is not so well, it must be taking a real strain on both of you. I can only hope he manages to get better. I have seen the river higher than that, one time it was over the bull the day before got into town. Up to then you could not get across the bridge
ReplyDeleteIt's been hard going Billy. Trying to cheer him up with the thought of the Malvern Fleamarkets this summer and so he needs to be fitter for those.
DeleteYesterday the bull was just on an island of grass, but boy the river was going some past him.
Sorry i used to comment more but lost all my sign in info so having to post anon.
ReplyDeleteI am so sorry your husband is ill like this please look into getting a downstairs loo put in. You won't regret it.
Also please check out vaccine damage. I took a vaccine years ago and it created lots of ongoing problems neurologically.
Hello anon. Sorry you lost your sign in bits. If you're anything like me, technology isn't my starter for 10! We have an option spacewise for a downstairs shower and loo, but it would have to be a different plumber as ours looked at it and said it wouldn't work, but I am sure it can be done - he just doesn't want to do it!
DeleteWill check out vaccine damage too. Last one we'll be having - it was the Moderna.
I am sorry that you have lost your Auntie and will be unable to attend the funeral. I was so hoping they would find out what is going on with Keith. You are under so much stress.
ReplyDeleteGod bless.
It's hard. I just hope they will do a link to the service, but that wasn't available for my uncle's funeral. Stress not a good thing. Am avoiding taking blood pressure presently . . . it's been sky high.
DeleteI'm so sorry that Keith's health is so poor right now. If you can, do go private for the neurologist. I'm sorry you have this plus the loss of your aunt. When my sister was ill, I was her primary care giver throughout most of the time. It was exhausting and so emotionally difficult. I had little help. I would get fed up with the advice I got from others to remember to take care of myself - I'd wonder how to do that when I was so busy and she needed me. So I just offer to you to grab every free minute for yourself; accept every little bit of help offered and then ask for more. I do hope the doctors can finally figure out what is wrong and get Keith back to health soon.
ReplyDeleteOh Celie, another one who has really gone through the ringer and been emotionally ripped apart. It is so hard. I have the kids to step in if I need a day out, so that is something. Now Keith has a pendant, I can have some fairly local outings too, but waiting for better weather. Keith more active today!
DeleteThanks for telling us what is going on, and all you can do is the best you can, and I know what you mean about asking for help. What a great picture of the two of you.
ReplyDeleteThanks Marlane. Trying to keep my chin up. Hardest part is not having anything to look forward to right now.
DeleteThat photo brings back such a good walk - though I should say scramble as it was steep and rocky in parts. Worth it for the view though.
So sorry for all that you are coping with right now. We are helping a neighbour with PD. She's at last admitted she needs support. I really feel for her daughters who are struggling to do the right things. Accept offers of help - people do care and it will lighten your burden. And as others have said, make time for yourself - a walk, a bit of Crafting... such things are good for you. I find Pataks korma curry paste pleasantly mild. The others are too hot for me.
ReplyDeleteThanks Angela. It's a horrid disease. I think my palate for hot food is changing now I'm older. I had a Welsh company's curry last night which was good. Hot but not too hot. Crafting today - 2 rows of x-stitch and a change of colour before the kittens wanted to join in!
DeleteOh dear Jennie, I am so sorry to hear this. I hope you get answers soon, but PD can progress quickly especially with increasing age. We didn’t get out for a walk yesterday (it poured with rain all day) and I notice with S that his balance is off, voice is weak, facial expressions become more pronounced when we don’t exercise briskly with all the benefits of a walk in lovely countryside - birds to listen to, sheep and cows to talk to, friends to bump into for a chat. I think this is the difference between men and women. I took advantage of a day at home to make a big pan of ribollita soup and the second Dundee cake, catch up with the basket of ironing, sort out my needlework wool and clean the kitchen floor. I am reading Hermione Lee’s biography of Virginia Woolf and re-reading the novels alongside. Dinner was venison casserole out of the freezer with extra carrots and potato and celeriac mash. Meanwhile S is at his desk in front of a computer screen working. He has decided not to retire yet from our publishing business. His business partner is struggling with his 95 year-old mother and a difficult divorce from his wife of 30 plus years which puts our problems into perspective. I get some respite today with an afternoon in the bookshop. We’ve had a poor week so far and can’t post books abroad at the moment either so hoping for lots of lovely actual customers. Cannot believe that this time last week we were out on our bikes cycling 10 miles, followed by a gardening session. I have had a couple of quick sessions in the garden this week but my goodness it is soggy underfoot and we’re on the greensand ridge which is very well-drained. The water meadows below us are sheets of water and I know my friend in the old mill has got all the pumps working. Anyway, take care BB and know that we all care and are rooting for you to find a solution. Sarah x
ReplyDeleteI think we just had a perfect storm of things and Keith has taken his eye off the ball when it comes to the exercises he is meant to be doing because he's been sleeping so badly and went downhill. The Nurse showed him he wasn't as bad as he thought he was yesterday and I am hoping he has turned a corner for thinking more positively.
DeleteOooh, venison cassserole. Couldn't we murder one of those right now. Must see if our butchers has any in next week. You can have my share of the Celeriac though as my taste buds don't care for it.
I listened to an interesting appraisal of Katherine Mansfield's writing on Open Book this week. A writer I haven't sampled. Perhaps I should as I enjoyed the extracts given. I am very much enjoying my Pillar of the Earth though - it's good escapism.
Your husband must have been in two minds about retiring but he has done the right thing by supporting his partner.
Sorry you've had lots of rain too. Our flooding's subsided but I think Hereford will get it soon, with the follow on from the Severn as other rain-swollen rivers join it above Hereford.
Make it Jen! Jennifer was just what my aunties tended to call me. I have tried to explain to Keith that he needs the fluids to help his body cope with the meds. He would only be put on a drip in a hospital setting though.
ReplyDeleteThanks for the good wishes. I am taking what little solace I can in tiny things - just seeing the first Celendine leaves in the hedgerow today, and being scolded by a wren as I walked past her spot made me smile.