No positives at all yesterday. I was on my own with Keith, and he was obstreperous as it's possible to be. I found that the D. Nurse had to come out again (we'd only seen her the day before), and I ended up having to change sheets 3 times (twice in the space of an hour) and try and replace the dressing which had gone on less than an hour earlier. Not easy as Keith was tired and found it difficult to stand for me to get the dressing in place. To do this with him lieing down it takes two people - one to help him stay on his side and the other to do the dressing. As the day went on I became increasingly angry and frustrated and worried and horrible and kept bursting into tears. I hate myself as I was shouting at Keith, and he wasn't co-operating as he hates the tilting mattress and keeps telling me it isn't working (it is, for the main (large) pressure sore but we can't seem to get the surrounding area to stay dry. He refused to have a pad beneath him which the D. Nurse said to use (hence the sheet changing and washing machine on all day). He has wax in his ears and had the tv nearly as loud as it can go and it was driving me mad. I have come close to breaking point today and there seems very little likelihood of ever having carers to help here.
Debby - communication is via a sheet printed with the alphabet or with a predictive text i-pad but Keith seems to prefer the sheet. However, I keep missing letters or he doesn't point clearly or the letters are covered by his hand, and that is frustrating for both of us too. The OT woman is the one who does everything by the books and is NOT helping with adaptations to help him, but actually taking things AWAY! I said we didn't want her here again, but have to suffer her being back here again next week, or else cause a delay. I rather think I shall be telling her this when she arrives next week, having found out that she has not allowed an order for a motorised wheelchair to go through but modified it to a non-motorised one and the first we heard of this was when I was chasing the order up.
The day continued to deteriorate when I noticed I needed two new front tyres on the car but I couldn't get away to the garage. Hoping they have them in stock . . . Then the Asic running shoes I bought on Ebay arrived and seemed ok at first, but the longer I wore them the tighter they got and so I have spent good money for nothing. I know - don't buy shoes without trying them on, but needs must. I will have to try and get to Hereford today to go and actually try some on before buying. I just cannot get away these days and Hereford is the nearest place I can go shoe shopping. It's Malvern Flea on Sunday and I HAVE to be able to walk comfortably for that.
I have been awake since midnight (2.30 a.m. now) and came down as feet so painful (the bad one still hasn't healed) and back and arthritic neck hurting from trying to get Keith up the bed earlier. I've had Ibuprofen in the hope I can sleep when I go up again.
Pippi has been catching 3 meeces a day and I have either been removing corpses or trying to rescue the poor blighters before they are murdered.
The only good bit of the day was relaxing a bit this evening watching two episodes of Poldark with D & E (well, D was on his phone listening to Podcasts instead). I hope today is better, but the Respite afternoon I had planned has now been hijacked by shoe shopping. Yeesh.
I wish I could think of something truly encouraging to say--but It would be false cheer and I don't think you need that. As I've mentioned before, sick people, especially men, are difficult! One makes allowances for pain, frustration, fear, but difficult behavior can seem very one-sided. Surely Keith can see that by refusing the protective bed pad he is making you a constant amount of extra work [?]
ReplyDeleteI am so sorry! I hope the cats supply a bit of comic relief--mice and all!
Blardy-mindedness was the rule yesterday. I know he must really be in pain - and he is laying flat on the bed most of the time which then makes for pressure areas higher up too (nearly in the small of his back). I am NOT a nurse and really don't know what to do for the best. I can only reiterate what the D. Nurses have said, but with his hearing being impaired at the moment, he probably isn't hearing them say it and thinks it's just me being bossy! I rather got the impression he didn't give a jot about causing me more work yesterday. . .
DeleteOh gosh, watching me under the furniture with a pink pond net mouse-catcher must be quite amusing to watch!
I have been in your shoes (no pun intended) and it is unbelievably stressful and frustrating (my husband had a brain tumour and was like a person with dementia). The only thing I can say is that my local hospice came to my rescue. I saw that a pressure sore was about to develop. I asked that he be referred to the hospice and before I knew it I had everything that he (and I) needed. I have no idea whether your husband would qualify for hospice care and whether you have one near you but they were my life saver and made his remaining days more comfortable. We were so fortunate and my heart goes out to you. Can your Parkinsons Nurse help at all? If I was closer I would come and give you a hand (easy to say but I really would - retired nurse).
ReplyDeleteSorry you've experienced it too Julia, though worse as your husband had a brain tumour. I would probably be just as nowty if it were me. The Consultant did say if we were in Herefordshire she would have referred Keith to make Hospice contact last December (a bit of a shock) but we are in Powys so it's a different ball game. I think there is one in Brecon, but once again he is SO anti any sort of hospital involvement we have had to make other arrangements. I have also refused Respite for him. The Parkinsons Nurse came out last week and made some useful suggestions, so she knows the state of play. Nice to think you would help if you could, bless you.
DeleteI’m with MM darling J x I wish words could help x If Keith isn’t physically able to remove layers then I’d be laying him on some kind of absorbent pad to help reduce a bit of the washing. He can’t pull himself up to remove it after all. He must be miserable and we are quick to move to belligerent mode when we are low and in pain or uncomfortable. Could Dan have a stiff word with him along the lines of ‘ you need to go gentler on mum, she’s doing the best she can ‘ ? I am sure he knows this in his heart but what comes out of our mouths can be wrapped up in frustration and anger when we are feeling wretched.
ReplyDeleteMice are so numerous this year, I’m afraid I let Malory and Charlie get on with it. We are on contract with a rat man with the grounds here and for the first time ever have had mice in two of the legs! Far from ideal. Rat man says it’s been a year for them- burrows flooded with all that rain maybe? So they’ve moved out to other places.
Would getting headphones for K help? Might help him to hear the television better plus reduce the noise levels for you too. By headphones I mean those big over the ear sort not the awful ‘pod’ things I cannot bear looking at those they give me the heebiejeebies !
Enormous hugs x and more of them xxx and courage x xx x Danette
Well, Danny's idea of two pads (side by side) inside a pillowcase has helped and his weepy areas are drying up AND both the dressings stayed on overnight. That's a first. I know how low he is from the pain, but he won't let me HELP him. Someone else suggested headphones so I am going to look into that. It was sending me lala yesterday, it was so noisy.
DeleteThank you - knowing you (and all on here) care really helps.
I feel for you!! I took care of my parents for many years in their home. The level of just plain stubborness surprised me daily. Put the pad on the bed. You have to do that especially if he has pressure sores. They would do that in the hospital and it is better for your husband hygiene-wise. Have you tried diaper ointment for the bed sores? It keep the area dry and protected. I am sure you have tried lots of things. Make sure you take a slice of time for yourself to have your shower and take care of your own personal needs. You will not be good for anything if you don't. Believe it or not, you can do this...it is just very very difficult.
ReplyDeleteTake care,
Bun
Oh bun, someone else who's had to step up already. The nurse suggested an absorbent pad like the ones they have in hospital (it's like what you house-train puppies with!!) but don't know where you source them. We are using Medi-derma skin products which is what they were using in the hospital. The main thing is to try and keep the skin around the big-but-shrinking pressure sore.
DeleteAh, personal needs. I am lucky if I get a chance to think bath-time once a week nowadays - all my routines have gone to pot. That said, I do wash daily but there's always a queue for the bath or shower. Daily baths have gone to pot.
The absorbent pads are sold on Amazon, delivered to your door. They call them doggy wee wee pads or pe pads, training pads but they re the same as hospitals use. Choose extra absorbent. very soft. They come XXL, bed sized.
DeleteSo sorry to know that your day was even more challenging than usual. Hope you get some comfortable shoes, essential when you are on your feet so much.
ReplyDeleteThinking of you.
Alison in Wales x
I went to Hereford today. Whilst I couldn't find the place we went when K was in Hospital in Hereford, I found JD sports and got some black and blue supportive trainers which were much wider and half a size bigger than I usually take. I've just had a short walk in them and my bad foot isn't complaining now. Hooray.
DeleteSending love and support, I have nothing useful to add. I'd come help if I weren't an ocean away. Are you doing the flea as a seller? [seems impossible] or just for a morning to be out?
ReplyDeletesending a hug
lizzy
I know you'd come and help but it's a long swim!! No, looking round the Flea and if anything yells at me, then I will haggle :) Got to keep my skills up. It will be great to see friends too. It means getting up early so I hope I will sleep the night before. I've had 3 hours less sleep every other night this week and it wears me out.
ReplyDeleteIt saddens me on your behalf when you have yet another awful day. Why have you cancelled respite? Keith will just have to put up with it. In some ways your needs are outstripping his at the moment. Loss of control for Keith, or anybody in similar situations is a big thing and who is easiest to boss around, the family. It's difficult for him but you can't let it get to a point where you are completely done in. I'd tell the district nurse how difficult the OT is being.
ReplyDelete