I'm feeling a bit of a failure tonight. Keith has been so bad all day - he's hardly been able to move. Of course, we had to go out for two appointments. One we knew about (PD Nurse) but then we had a phone call making us an appt. for Keith's BP to be checked this afternoon. We were late for our first appointment. I allowed 20 minutes for Keith getting to the car and us going two miles down the hill, and then into his wheelchair and in to see the PD nurse. I should have allowed half an hour at least, as it took Keith 20 minutes to shuffle, an inch at a time, from his chair in the living room to the car. I have a thing about being late and absolutely HATE it and I knew we would be late, which made me fret, which was pointless - Keith was doing his best.. Doing anything really slowly also bothers me - so I am having the hugest lesson in patience with this wretched disease. I let out a big sigh when we got half way across the kitchen, and of course, I should have buttoned my lip as I know Keith can do no better. I did wrong.
This afternoon we allowed more time but Keith could still barely get along - the low blood pressure affects his neck - the PD nurse called it the coat hanger effect, and it is very painful and makes Keith worry about falling so he is far slower than normal, moving his feet an inch at a time. One good thing came of it as after his BP readings were taken, the nurse went to chat with the Dr and we got a prescription for another add-on BP pill to take the total up by 50%. Hopefully that will make a difference. The PD nurse is also going to ask Physio to start massaging his neck. Meanwhile Emma gave me the number of a local lass who is a mobile masseur and I spoke to her today and she will come once a fortnight to try and help him. So I must count a few positives there.
He's just gone up to bed, and of course the kittens were on hand to help out, as always! Hiding under the duvet when I throw it back to Keith can get in bed. They think it's great fun.
Yesterday I went to Brecon to B&M bargains to get the month's supply of cat food. It was an expensive outing as I also bought 3 bags of golden gravel to reinstate the path with, and ahem, I may have been seduced by another plant. Well - I couldn't go home without it as it is so lovely . . . the most beautiful Lacecap Hydrangea in stunning colours:
Both the Hyrangeas, and the jazzy Buddleia will be planted in juxtaposition - but obviously with room between them to grow - probably to the right of the new bed being created. Meanwhile, I am off to bed nursing three fresh horsefly bites as despite putting Avon SSS everywhere I thought it mattered yesterday, I then got bitten on my back- where I hadn't put any!
I'm going to assume here that Keith is the same as I am. My brain is telling my hands and my legs what to do and. they won't comply. The other thing I'm finding is my brain is working at its normal speed expecting things to be done now but my hands and legs are working at half the speed or less of what the brain is saying to go at. I too live in fear of falling.
ReplyDeleteI think so. He isn't standard Parkinsons and because of that the drugs don't work that efficiently (or so it would seem). The low BP makes it all ten times worse.
Deletemy BP is high, Which course is its own set of complications with the medication contraindications. And by the way, you may feel that you were a failure yesterday, but you are not in any way, shape or form a failure. I used to feel the same way about mum that I had failed her on many an occasion. You have not failed Keith at all. You are looking after him well and caring for him with all the love in the world. You are doing the best you can with limited resources limited. help from the NHS and services. and limited knowledge. No one could ask for more.
DeleteI am also slow, but have a zimmer frame to use in the bungalow which does help with the balance. Does Keith have one? I was given mine by the hospital physiotherapy when we lived in Wales although I didn't need it then, but it has been a godsend for the past few years.with getting around indoors. Is it possible to get home visits from your surgery?
ReplyDeleteKeith has two but one's in the attic - we got given that extra one in January so we had one upstairs and one down. He improved then so I put the downstairs one away. I need to retrieve it now. He has been using his 3 wheel stroller down here but it's not ideal as he bends double over it.
DeleteThe PD nurse visits involve weighing, checking urine samples etc. I don't know what happens in the future. (Try not to visit that too often tbh).
I sent off for a three wheel stroller, but found that it wasn't as sturdy as a zimmer so sent it back. I have to have something reliable which I can lean on without it giving way.
DeleteSome days are just harder than others. You cannot beat yourself up about it. That hydrangea is gorgeous.
ReplyDeleteI need to learn patience and cull exasperation. That Hydrangea was too good to leave there!
DeleteThat takes a lot of work and time to get Keith into the car and into his appointments. The neck massages sound like they will help him. I like the hydrangea and buddleia you chose.
ReplyDeleteIndeed. This was the worst he's ever been and such a worry. The neck massages don't seem to last though - let's hope the upping of the BP meds help.
DeleteWon't be planting those new plants today - raining steadily.
So sorry you had such a bad day - hope the extra medication and massages will help Keith. I know when I had to take mum to hospital appointments I found it so hard to be patient with her. Horse bites sound nasty but I do like your new hyrdrangea it is stunning. We were very tempted by one in B and Q recently!
ReplyDeleteThe benefits of the massage soon wore off and his neck pain (due to low blood pressure) returned. Still, he managed to walk a bit in the kitchen today so fingers x'd the increase in medication will soon kick in. If you have never had a horse fly bite you don't know how lucky you are. They itch like the devil - for about 4 days!
DeleteThis sounds so hard for both of you. I completely understand your impatience and frustration and can not even imagine how K must be feeling. We are lucky that our gardens bring so much pleasure. You have encouraged me to enlarge a border and plant a rose (Vanessa Bell is doing well, she is on her second rose now and I counted seven more buds yesterday) and I am making plans to enlarge another small border which also buts up against the terrace. I am bringing the garden closer to the house as when we moved here five years ago the only planting was under the pergola. I now have two hydrangea Paniculata down in my woodland edge which are both on the verge of flowering. One is called Vanille Fraise which has white flowers turning pink as they age and the second is new to me this year and is called Kyushu after a Japanese island and has white flowers too. The meadow is looking great with knapweed, wild carrot, musk mallow and white yarrow and a second flush of yellow rattle keeping it fresh. It is alive with butterflies too - Marbled Whites, Red Admirals, Comma, Common Blue, Large Tortoiseshell as well as hundreds of Meadow Browns and Small Skippers. Tom said that while he was wood stacking yesterday the kestrel hovered for ages over the meadow before swooping down. Yesterday afternoon we had a lovely walk in Petworth Park for a change. It was very beautiful with the contrast of tawny grass, dark oak trees and huge fast-moving skies. They are painting the house windows facing the park - a big job - and there were two massive cherry pickers in action to reach the highest windows. When we got home T had stacked in the field shelter the two cubic metres of logs delivered earlier that day. He has his uses! He is moving back up to London next week for six weeks and I will miss him, although there is a strong possibility he will be back here in September. I am working this afternoon and tomorrow morning which I am looking forward to. The Petworth festival started this week and it is the festival of speed at Goodwood this weekend and next week it is the Polo Gold Cup at Cowdray and the week after that Glorious Goodwood starts. Time is flying! Take care BB and enjoy pottering in your garden which you are making your own. Sarah x
ReplyDeleteA walk in Petworth Park sounds wonderful. I had hoped to get Keith out and about to view some of the lovely old houses in Herefordshire, but he just cannot manage it. Your wild flower meadow is attracting a good selection of butterflies. It's a good year a for Meadow Browns - have lots in the garden, just one Silver Washed Fritillary (hatched here), some Common Blues, a Tortoiseshell and a Red Admiral.
DeleteI like the sound of the garden moving in on the house! A good excuse to buy some lovely plants anyway. I think you have more of a plantsmans' selection in your neck of the woods. Round here, it's common or garden only but if I go to the walled garden place at Llangorse, a better selection is on offer. It was a Vanille Fraise Hydrangea I bought the other day I think.
Glad you got your logs stacked. I still find it difficult to walk past a good bit of wood for the log burner!
It is difficult Jennie, but you are coping very well. Virtues and vices can't be swept away, exasperation especially. But you have your plants and garden to take the strain, or though they strain your physical health by the looks of it, but you seem to have the heart of a lion coping.
ReplyDeleteThe garden's not killing my muscles too much now I've been gardening most days. I am doing my best to control my personality flaws when nursing Keith - things aren't helped by worrying about him and getting scared of him losing his mobility completely. All we can do is soldier on.
DeleteI think being seduced by a Lacecap Hydrangea was exactly what you needed yesterday, it's beautiful. And the one thing you are most definintely NOT is a failure. I am exactly the same as you when it comes to being patient with things or people and then there's the awful guilt you feel afterwards for being impatient. It's hard to get past I know. But you are doing your best. xx
ReplyDeleteI think so too Sue. It didn't break the bank and it will look just perfect in the spot I have planned for it - yet to be cleared. I am learning patience, but it's a hard lesson.
DeleteYou are not a failure. You are dealing very well with an extremely difficult job. We are not trained to care as much for our partners.
ReplyDeleteI nursed my mum so she could stay at home, so I had some practice. But I had my horse Fahly then so could get out and unwind on him, and also had Keith to help me. It's not so easy on your own.
DeleteI agree with gz. I think you are doing amazingly well taking care of Keith and managing your home. I took care of my sister with cancer for about six months, and it was unrelenting. I was always exhausted. Do give yourself credit for all that you do. My best to you and Keith.
ReplyDeleteYou did so well to care for your sister Celie. Things could be a lot worse than they are at the moment (and believe me I don't look too far into the future these days) but some days life is a lot easier than others. I hate to see him struggle so.
ReplyDelete