After much investigating, testing, and the nerve conduction studies, we officially received a diagnosis for my husband, Orest, on November 24, 2017. This is the day we began the ALS journey. We had no idea this could be the cause of Orest’s changing health so we were completely blind-sided with this news.
Orest’s journey began with him being able to still manage doing everything for himself. I have come to realize ALS keeps taking little nibbles of a person and slowly it means needing more and more help. It also means eventually not being able to take part in those things one found so enjoyable; especially, those things enjoyed with the grandchildren – very sad realization. Not being able to visit our families in their homes is sad too since their homes aren’t equipped to handle Orest’s special needs. Now they come to us more often and that’s a good thing too. Dinners together, sleepovers, weekend visits at our home make so much difference for Orest.
I am writing from the perspective of a spouse who is fulltime caregiver. As ALS nibbles away at my husband I have had to come to terms with our new life. Though I am at home most of the time, I find this has become my unexpected blessing/opportunity to spend the time I would like to finish those family scrapbooks along with other hobbies I enjoy. So, I would have to say that is my “Making it Possible” to continue this journey.
Orest, generally, has come to accept his condition & only occasionally gets frustrated that he has become so dependent on me. We have given me the title “ULPN – Unlicensed Practical Nurse”. It gives us a laugh when one is needed. We have also begun saying that we are regularly ‘editing’ how we do things for him. That gives us another little laugh. As his dependence has increased, I find myself saying in my head “How would I want to be treated if this was me?” This, along with my faith, has helped me so many times. Being in the body that ALS is nibbling away at is far more difficult than doing the practical things needed to make a new day as enjoyable as possible. I would say this is Orest’s “Making it Possible”.
We are both so thankful for all the care and support we receive from Homecare and the ALS Society. Recently it became urgent to have a lift installed in the garage. From my call to Homecare, having an assessment, then ALS being here to do the installation, was only a matter of days. Our immediate family members have their concerns but that seems alleviated when they see how quickly Orest’s needs for equipment, etc. are met. Feeling alone in this journey is gone knowing we have this caring support and encouragement behind us.
To all the spousal, family, friend or professional, caregivers out there; be encouraged for you are most certainly Making it Possible for your ALS person to keep going on their ALS journey.