Struggling a bit here

No Marie Curie nurses for two weeks now as they have had an influx of palliative care cases so 4 nights a week on call with V's erratic sleeping patterns means very disturbed nights . I was getting them at least once sometimes twice a week . V seems to have deteriorated very rapidly over the last month what with the OCD now being treated with Respiredone and not altogether successfully as although she has slowed down in whizzing up and down in her recliner chair all day long she now says she is in a muddle and it has run out so can I do it for her . So the OCD has just been reorganised into a more manageable form so the psychiatrist tells me . She should try being in my place for a day !

V has now also keeled right over - she spends a lot of the day with her nose on her knees and no amount of straightening up , tilting back in her chair will correct it for more than two minutes . This is beginning to effect her breathing . On top of that she has given up watching Eastenders ( a soap for the uninitiated ) which she has followed religiously since it started some umph many years ago . She says she can't understand it anymore and doesn't know who the people are . Sad but there it is . Mind you I have to say that it is such a miserable program I can't see why anyone would want to watch it in the first place .

Her cognitive grasp on the world around her seems to be diminishing almost daily .Communication is sporadic and difficult to both hear or understand .

Well that's me done - I am still upright and while V was at the Hospice today I had lunch with my Romanian dentist and we discussed the referendum and politics in general - I learnt a lot about Romania and had my mind stretched with some intelligent conversation - a whole two hours - so it is not all bad .

love to one and all Georgepa

I might even feel a nature ramble coming on !!

14 Replies

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  • I imagine that you are absolutely shattered having to care for V without the Marie Curie nurses to support you, makes me tired just reading your post. It does sound that V's condition has deteriorated significantly, it must be so difficult to help her feel comfortable and be unable to engage in the things she has always enjoyed. ( although I have to agree the East Enders isn't the most uplifting programme)

    Glad you managed lunch out and some decent conversation, I really miss be able to chat with Ben, he seems totally switched off from anything I say and he is in relatively early stages but has deteriorated considerably over the last 6 months.

    Why not try to go for a ramble albeit between the showers, don't forget the waterproofs.

    Love Kate x

  • Oh, Georgepa, what a terrible decline, and how awful for your wife and you. The "folding up" must be miserable. For many months my sweetheart's tendency to tilt sideways was entirely gone, and he seemed much more comfortable sitting. I credit the attentions of his physical and occupational therapists and the efforts of his carers. It has come back now, inevitably, and I put my hopes on the new wheelchair the VA has ordered for my sweetheart. It both tilts and reclines, so it's kind of a lounge chair on wheels rather than for transportation, and will come with what they call a "moustache" neck support, which has these narrow wings that come forward to support his head under his jaw. We will be able to go out in the garden with it so he can nap in the shade with his feet up.

    Good to know you were able to get out for a stimulating conversation and lunch. We went together to a history lecture this past week, which was interesting, and then parked by the river to wait for a takeout dinner order and were astonished to see several huge sturgeon leaping up and slamming into the water, sending fountains in the air. Quite thrilling, really. It's amazing how much a pleasant break in routine helps strengthen me for another day.

    I look forward to your notes from your ramble. Enjoy!

    Peace, ec

  • So sorry to hear of this deterioration. Its so sad. I can imagine how exhausted you are but its the emotional exhaustion that is difficult to bear, isn't it ?

    Chris is no-where near the place that V is but the deterioration in communication is really painful for us both. How I yearn for a heated discussion !! Even a row would be acceptable !!!

    Like you I can feel myself responding eagerly to any conversation. It reminds me of when my children were babies. I loved being at home with them but felt the lack of adult conversation. I lost myself and found I was saying " Look at the little doggie "

    Now I'd probably say " do you need the loo ?" and wipe their nose !

    Hope you find more help quickly.

    Love and hug from Jean x

  • Ramble on my friend...

    B takes the remote and clicks it from show to show....I try not to watch as he seems to change the channel right at the point of interest!

  • So sorry you are struggling Georgepa. Not been a great week here either. Just when you think you are getting things sorted a bit, another problem rears its head. Thinking of you both.

    Vicki x

  • Thanks Vicki

  • Oh George, wish I could help. Perhaps we could do a nature ramble next time! Don't worry, it will end with lunch!

    Had a great time in Salcombe, only got wet, a "few" times!!! Came back lovely and refreshed. It even lasted a couple of hours!!! Nursing home have commented, how much S has deteriorated in the last couple of months. I thought I had sent him in quite well! Shows how little WE actually notice.

    Sending very large hug and some of my new found strength, to get you through, until Marie Curie can get back to you.

    Lots of love

    Heady

  • About a week left with no nurses nursing! How you doing Georgepa, how's V?

  • Had two weeks without night nurses so it was abit hairy .But they have come again this week .V is deteriorating quite rapidly at the moment - she spends a lot of her time bent almost double .She has lost all interest in just about everything and he OCDdominant is pretty

  • Don't know what happened there suddenly got sent before I was ready but you get the gist .Trying to use a tablet and it is super touch sensitive .

  • Oh I get the gist....I wonder if her nurses won't stimulate her to "unfold " as it were. I didn't realize it's already been 2 weeks.....you need a break! I hope you are finding ways to get oone now and then !

    Best wishes

    Sent on my 10 year old Toshiba pc

  • I usually use an old Mac Laptop . My sister who is 77 and known as Techno gran by her grandchildren because of her love of smartphones , wire-less music systems ,Kindles and tablets insisted that I have one of her "old" tablets - probably last years !!! You have to swipe things and the slightest touch seems to send it into paroxysms of hyperactivity . Sometimes I just long for a fountain pen and a writing pad .

    All the best Georgepa

  • Einstein said of world wars, I'm not sure with what weapons WWIII will be fought , but WWIV will be fought with sticks and stones....May I add, and pens and paper !

    I do however envy the one who can understand these machines!

    Swipe gently,

    AVB

  • My love to you both George, and hope you may now be getting more help.

    Flicka x

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