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,
JJ