Just a down day

[DenB]

A couple of weekends ago, my husband who is in his 8-9th year with CBD, was having what I call, one of his very down couple of days.He wasn't eating much or drinking much, he has lost so much weight which has happened gradually. He wasn't communicating at all and sleeping most of the time.

I carried on as usual because this happened every now and then and after these episodes, he would usually pick up and be more of his usual self.

On one of his down days he was due to go to the Hospice , as he did every Monday but they rang me to say that that they were concerned about him , after observing him all day and that they thought he might only have weeks to live as apposed to months or more!

I explained that he was probably having one of his bad days and that he would probably be ok the next day, although I was still a bit shocked at hearing their words.

I started to wonder if, after caring for him for so long now and seeing only gradual changes, lots of ups and downs, I might not recognise if he was actually in the very final stages of life!

He did, as I thought he would, pick up the very next day and has started eating better than he has for a long time.

Well, all seems as it usually is here. I have put what the Hospice nurse told me to the back of my mind and will carry on taking each day as it comes.

Who Knows.......

Love to you all

Denise x

[Ettavb]

Living with a loved one affected by CBD for many years... well one does start to question the universe.

[DenB in reply to Ettavb]

I Love your reply......exactly how I am feeling right now!

Thanks x

[Kevin_1]

Hi Denise

It sounds miserble.

We thought we had lost Liz afew weeks back. The GP even signed some sort of advanced death cert. because she was sure that Liz would not make it through the weekend. No here we are quite a few weeks on and Liz is gaining weight a little and enjoying an audiobook.

Yes, for me too, just day by day.

Waving warmly

Kevin

x

[DenB in reply to Kevin_1]

Thanks for replying Kevin.

It's just that, it made me start to think that maybe Roy is at that stage and I don't even know it!

Love to you both

D x

[Beads0122]

Denise,

I think I would be depressed also it my body was failing with CBD. My wife would walk in tight circles, but then the falls became more frequent.

I'm sorry.,

Bobby

[DenB]

Thanks for your reply Bobby.

I remember the time when there was the worry of falls.

Wheelchair bound and bed bound now, so no worries of falls anymore.

D x

[honjen43]

I understand how you feel, Denise!

I only had a few months of steps down!

Even at the last week my love's ward doctor, a gerontologist, said he had another 6 months to a year. I felt I knew different - and was more in tune with my love. I was right.

I found CBD masked its progress in so many ways. Are the steps down any closer together? I then became more concerned at my inability to keep ahead of my love's disabilities, and the time it took to get extra help or needs in place.

Watch too at each step down, what returns and what is missing.

While in hospital, I noticed he was having small difficulties using a knife and fork. Nurse noticed it 24 hrs later. I asked for soft foods 3 days before the nurse noticed a hesitancy in swallowing.

I suggest these are indications you should keep an eye on. Once this occurs, then watch for signs of infection and pneumonia on the right lung. It can be treated but it does weaken the body.

We can only care and battle on and give them love! You have been amazing!

Love and hugs to you both

Jen xxx

[DenB in reply to honjen43]

Thanks for your reply Jen,

I think, as you suggest, that the signs of infection and pneumonia are what I will be looking out for now.

Denise xx

[Hidden]

Larry has periods of what seem to be declines then bounces back. Each bounce back is a little less each time.

[Dadshelper]

Day by day is a good way to procede. Do what you can to make him comfortable, you know him better then anyone.

Ron

[DenB]

Thanks for your reply, Ron x

[Marilyn_cbd12]

Denise, yes, day by day is how it goes, I guess. My husband has entered a period of accelerated weight decline (13 years into CBD and down to 118 pounds now, ) and I am working with dietitian and GP on helping him to consume more. He says that he just isn't hungry and I believe him. The cells that signal hunger must be in atrophy now. Some days I feel as though I hover over him, watching for his needs or changes and other days I just try to take a step back and focus on loving him. I have begun to wonder what the toll has been on me - I wake every day to worry about him and dread "the next step." That must change a person. During the day I am fine, and friends tell me how well I take care of him and admire that I am keeping him -- and myself-- as involved with living, but this does feel like the movie Groundhog Day, waking to something that neither he nor I can fix.

Marilyn

[raincitygirl in reply to Marilyn_cbd12]

It's a cruel frozen life isn't it Marilyn?

I used to feel that - that nothing was moving because our life was so slow and small. I couldn't see the forest for the trees. But of course it WAS moving, slowly and constantly to the end. And when it comes, you are still shocked - no matter how long you've had to get used to the idea.

Bless you for focusing on love over technicalities... It's all that matters.

Anne G.