CBD - Is this the end?: Got to hospital... - PSP Association

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CBD - Is this the end?

honjen43
honjen43
17 Replies

Got to hospital today to find my man on a drip and not very responsive!! And they had not bothered to let me know! Was NOT IMPRESSED. And made sure the message got through.

Nurse said she had seen patients in this condition wake up and recover. My comment to her was "Given his decline over the past 4 weeks, can you seriously tell me he will do that?" Her response was a predictable "No!".

He has had an xray and CT and all they found was a possible chest infection. From what I have read this is typical CBD finale. I am relieved it has come, albeit so very quickly. However, doctor has given intravenous antibiotic.

He remained peaceful all day, and responded with something like "OK" when I left. My youngest son came by to support me, and I have left him in the tender of the nursing staff while I try and get some sleep ready for tomorrow.

So far in this rotten disease, my understanding of what has been happening has been far closer to actual events than that of the doctors overseeing his care - apart from the neurologist who is on my wavelength, but still seems unsure of timeframe.

I hope I may be wrong - it would be lovely to talk to him again - but in all honesty I wonder if he will re-emerge - and if he does I imagine his brain has taken another battering and he may another step along the way.

How lovely it is to have a place to vent my thoughts - where you all understand! I hope this helps others too who are travelling along this same road.

17 Replies
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NannaB

My thoughts and prayers are with you and your family at this difficult, uncertain time. Antibiotics can make a difference if given early enough but I'm sure you don't want him to suffer any more.

I do hope is is comfortable and free from pain for however long hi is still with you.

Sending you a comforting hug.

X

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honjen43
honjen43
in reply to NannaB

Thank you NannaB!

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Patriciapmr

Thinking if you at such a difficult time and sending you my love.....

Pat....xx

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Yvonneandgeorge

Thinking of you also, hopefully he is comfortable, sending you a great big hug, keep strong. Yvonne xxxx

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Heady

Hi, sending very big hug and lots of love at this trying and confusing time for you. Having spent a couple of days with S last week in hospital, at one stage, wondering if his heart could survive the pressure of his pain spasms, I understand totally what you are going through. Frightened one minute, because I thought his heart would stop, the next, scared that it wouldn't! This illness is so evil. Nobody deserves to be put through what our loved ones and us are suffering.

Thinking of you

Lots of love

Heady

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hellebore

Honjen43. I understand. My husband is really starting to shut down we could be in the same situation soon. I am not sure how to articulate how I get through. You know you have love and empathy and humanity. Take those deep down and use them like a mini furnace to give you strength. All strength and best wishes to you and family.

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honjen43
honjen43
in reply to hellebore
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honjen43
honjen43
in reply to hellebore

Hi hellebore . Again! This is my way. I have heard of others who write a book. Hope it will help others understand what can be expected - alonģ with that other factor that is CBD. Appreciate all the hugs and love from all of you. Jenny

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Katiebow

My heart goes out to you, such a difficult situation, one part of you hoping for him to pull through and the other hoping he has a peaceful and painless end of life. However things work out I send you my thoughts and love.

Kate xx

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nanonthenet1

I am thinking of you at this very sad time, sending my love x

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myjual7

My sympathy. Sometimes I wish I could go to sleep and not wake up at other times I just want to go back to my well days and find it was all a dream. Not much chance of winning either way.

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Andyclairea1

My prayers are with you and your loved one xxx

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ketchupman

Love and prayers coming your way ...

Ketchupman

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MartyBo

So sorry! This disease is devastating for the patient (me) and the caregiver (my husband). Sending good thoughts and hugs.

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honjen43
honjen43
in reply to MartyBo

Hi MartyBo Looks like you have only just joined us! Welcome! And thank you for the thoughts and hugs!

You will find help, knowledge and comfort here.

The post you have found of mine is over 2 years old. My husband's battle with CBD ended in June 2016, just after our 50th wedding anniversary.

Old posts and responses come up when you search, so that you have full access to to all we here have experienced. When I joined HU, there were very few posts on CBD. I am pleased (and saddened too) that so many more have found the site, and as a result there is a much wider knowledge available here on what it means to have, or to look after someone with, CBD.

No 2 people seem to experience the same symptoms or the same timeframes. So it is most important to plan while you can!

As so many show here, you and your husband will find an inner strength to fight the daily battles. And you can do this together! Plan your bucket list and start to tick each trip off, make sure you plan for additional help and assistance, and time for respite for both of you.

You are not alone! There is a great deal of info here on financial assistance, particularly in UK, and in Canada and USA; useful gadgets to help with tasks that have become difficult, etc.

Plan the legalities while you can discuss them together so that you both understand each others feelings.

Don't be afraid to discuss the bit about dying. As we age, or are confronted with a short or long term disease, it becomes even more important to be upfront about how we as an individual expect to be treated when we get to the 'sharp end'. Sometimes with CBD, PSP or other similar brain diseases, our ability to communicate easily has already gone, so early discussion means that your loved ones know and understand, and you have written a Living Will.

It may seem scary now, but is something we all have to face at some time.

From what I have experienced and observed here, it leads to a much calmer end of life when all around you understand what you expect.

Meanwhile, start planning and make some good memories together for as long as you are able! And stay in touch!

Big hug!

Jen xxx

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raincitygirl

Hello and welcome Martybo :-)

I echo all Jen has said. My husband had CBD and passed earlier than expected (At age 79 from a stroke or aneurism) but I believe our focus on appropriate exercise and mobility helped him stay somewhat mobile, communicative and enjoying aspects of life until his last day :-)

I wish you the very best of luck, and your husband too! Let us know if we can help.

XX. Anne G.

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MartyBo

Thank you! I try to stay as messerschmitt as I can. Need all the info sharing I can get. 😍

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