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Started by Eliboo
22 Nov 2015, 6:17 PM

I'm the wife caring for my husband by myself
(as good care agency's seems hard to find) with progressive MS for 28yrs ,just lately his ms is getting worse very fast and I'm finding  very hard to see my lovely husband disappearing before my eyes , I'm feeling lost and lonely coping all alone, I'm frightened off the end arriving! 
What is the end with MS ?
My hubbie is laying in bed more and more , his body is getting very stiff from top to bottom and baclofen just don't seem to work much any more,
hes also having frequent  zesures where he's looking  -
"at an instant grey- getting very cold and his eyes looking up and he makes growly  noises lasting about 2-5 min !  Then leaving him very tired , 
Luckyly he has no knowledge off it when he comes round and is in no pain,
a blessing in disguise, I got familie ... But haven't ! If u know what I mean ? 
My friend is by my side more than my children ,
our kids do care but as kids go ... Have families and a life too!
Is anyone out there going through similar episodes ? And how do u cope ? 
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Reply by KathCull_admin
22 Nov 2015, 7:07 PM

Dear Eliboo
welcome to our community. I am glad you found us and we're able to post a new thread. That can take courage. you will find themembers of this community will understand your feelings of loneliness and i imagine worry and sadness. You are providing such loving care to your husband. What a great gift is that.

Sometimes friends are are more able to help - do you think your children are overwhelmed by what is happening to their dad?

You our might find it helpful to send your questions about what to expect with your husbands illness to Ask A Professional on the Canadian Virtual Hospice  the link is on the right hand side of the main page. I just can't access it eight now. 

I know now others will write to support you as well.  You ask how to cope - what do you find helps you now?  Until we talk again
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Reply by KathCull_admin
22 Nov 2015, 9:25 PM

I just added the link above.  

And I found this in one of the questions answered What can be expected with end-stage multiple sclerosis?
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Reply by JennJilks
26 Nov 2015, 3:15 AM

My dear Eliboo,
I cannot imagine what you are going through.

 Do you have any help at all? You are doing an amazing job. No one else could do this for your husband. You should pat yoursel on the back for this.
I would suggest that you contact the MS Society, too. They have chapters across this country. They are experts in assisting caregivers like yourself. I'm sure they will be able to give you some help.
I would assume that you do not have a doctor helping, either. They may be able to connect you.

Most of them have disease specific research, as well as peer caregivers who will answer your MS-specific questions.

The problem with disease trajectory is that, firstly, it differs from disease to disease, and person to person. MS, as I'm sure you've seen over the years, is a step ladder of leveling off, or the yellow line, below, upsy downsy.
In Ontario we have symptom management nurses, who will come to your home, through CCAC.
They will know how to help you manage. 
There aren't many doctors who make house calls. Besides, you need a specialist for the naturopathic pain specific to MS. 

The 8 stages of chronic illness trajectory

1.     Initial presentation of situation; occurs before any signs and symptoms of a disease

2.     Trajectory onset

3.     Crisis: potentially life-threatening situation

4.     Acute: post crisis-symptoms controlled

5.     Stable, symptoms are controlled

6.     Unstable: e.g. foot ulcer,

7.     Downward phase; progressive deterioration; mental & physical

8.     Dying phase, weeks, days or hours preceding death.
 Anyway, all the best. We are a group of caregivers in one capacity or another.
I have a terrible cold, and a bit under the weather, but this is the advice I have for you.
I have two clients now. I volunteer, having cared for my parents.
Take care,
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Reply by Carlyn
27 Nov 2015, 12:35 AM

Dear Eliboo,

Welcome. I'm very glad you've joined us here so we can offer you support. I hope we can help you feel comforted and not alone in this.

The article Katherine kindly linked is excellent. I have a chronic disorder myself and the end stage could be a myriad cascade of things. Information such as that article is extremely valuable to help understand what is happening and how to safely and best handle it.

Is there a doctor involved in this? Your husband needs an actual medical assessment ASAP I think. If I were in his shoes, I would want to have a doctor to tell me why those things are happening and what my options are. Is that happening? It would be a great help to you also to know the answers to these matters. It would ease your mind a bit.

Meanwhile, being the sole caregiver in your circumstance is a lot. Are you able to have time for you? To nurture yourself, get respite, any kind of break? That's really helpful. I know there are a lot of changes happening in healthcare just now so unsure how home services are being handled. Maybe someone else here will be up to date on that. 

I'm thinking of you Eliboo and your husband and hope for more help for you both very soon. 

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Reply by KathCull_admin
28 Nov 2015, 8:35 PM

Hi Eliboo
I just found this article on the Virtual Hospice site and wondered if you had seen it Soul Mate. I know that each person's experience is unique, but providing care and support for those we love - is understood by other caregivers.  

April01 started My Soul Mate (the similar name is coincidence) where she writes about how hard it is to watch and worry.

How has this week been for you Eliboo?

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