In 2010, I was going into work every day and Lynn stayed home alone. At that time he was still walking though he would lose his balance frequently and fall. However, being the stubborn man he was, he chose not to use his rollator unless absolutely necessary (i.e. he was too tired or had too far to walk) and would instead hold on to furniture to get around. On this day in March, I left early to head to Williamsburg to attend a conference for the day. It was approximately an hour drive to where I needed to go. I got everything set up for Lynn for the day and off I went. I had made it to the conference center and was checking in as my pager went off. I dropped by things on a chair and went out to find out who needed me. When I saw my home number, I got nervous but figured he was just checking to make sure I had arrived safely. (He gets very concerned whenever I have to travel.)
I called and said, “I’m here safe and sound…no worries.” Then I heard his voice and realized that maybe I had a worry after all. He started out with something like, “I need you.” One second, I’m annoyed thinking, “what can I do from here?” and the next I’m scared and I’m thinking again, “what can I do from here?” He explained that he had fallen when he tried to get out of bed and had been trying for an hour to get up. He was exhausted and panicked and obviously scared. I did my usual nursing telephone assessment (are you bleeding, can you breathe okay, anything hurting, did you hit anything on the way down…) I asked him about calling an ambulance but we didn’t have a key hidden outside and there would be no way for them to get in and no one else was at home for me to call to run over there. So I told him to hold on and I’d be there as soon as I could. I grabbed my things and took off.
By the time I arrived home, Lynn had been lying on the floor near a heating vent for about three hours. He was exhausted from struggling to get away from the vent; dehydrated from the heat; emotionally distraught from fear and frustration. He was overheated and started vomiting shortly after I got him off the floor (which was very difficult by this point). He was in bed for the next two days and was never the same after that. To this day, he’s now afraid for me to leave him alone for any significant period of time and panics at the thought of me being far away.
That day marked the day our lives truly changed due to MS–more so than being diagnosed; more than his losing his job; more than anything that has happened since. That was the day he became DISABLED. That’s when he faced his mortality and he realized that life as he knew it had changed and he was no longer in control.
That’s also the day we became “disconnected” from others After that I started staying home full-time to work and only went into the office for meetings and then only if I had someone to stay with him. We became more isolated. Afraid to be around anyone who might make him sick, we stopped going to church. Limited to a wheelchair (because now he was afraid to walk on his own) we could not visit friends because there was no wheelchair access. I could not go visit my parents who live five hours away because their home is not wheelchair accessible. I could not leave him alone to go shopping so I shopped via the internet. I couldn’t visit anyone so they had to come to us (and since we live in a rural area, that was not very convenient.) I realized that if we kept going that way, depression would set in for both of us and his condition would deteriorate even more.
So we had to find ways to get connected! I started asking for help from the church. We have a wonderful church member who has created a ministry of sending email messages to members to keep anyone who wants to know up to date on prayer requests and praises or requests for assistance. I sent email requests for help and before long I had the help I needed and the process of connecting again began. Our families and friends now come to us more often because we have reached out and asked for help…and they give it abundantly. Even our stent(s) in the hospital last year served to connect us to others. Through that visit, I came up with the idea of this blog by talking to the wife of another MS patient.
And through this blog, I have connected even more. I connect to people who have MS, people who know people who have MS, and people who care for people with MS. Some live close by and some live very far away. Some know very little about MS and others have lived with it for 20-30 years. We are all different but we all have a common connection–MS or caregiving. That bond makes us family and friends instantly–a connection that brings us together even though I would not know most of these people if I was sitting across from them. But through this bond of our desire to care for each other and relate to each other, we are connected on an intimate basis.
The National MS Society is starting a similar connection on March 12. It’s called MS Connection and will be located at http://ntl.ms/MSconnection. It looks interesting and looks like a way to help us all make more connections so none of us have to deal with this condition alone. Check it out when you get a chance. I think you’ll find it has lots of potentials.
7 thoughts on “The Day It all Changed”
I can relate so much to your story, mine is almost the same. I remember when Tom first started what we called “slid downs” I could not leave and it was so very hard to stay. Tom and I have a great marriage,we started being short with each other. Our kids said Mom you need help. For some foolish way I felt like I was letting Tom down. We talked and both felt we would be doing a disservice to our marriage to keep up the way we were. So we started with a caregiver, just to come in and bath Tom stay 4 hours a day. Great then MS had it’s way and Tom progressed more. Caregiver 8 hours a day 4 days a week. No more going to FL in the winters. Now we have a great guy 5 days 8 hours and that doesn’t seem like enough . I hate crossing bridges with this , we never go back. When you move forward it gets better but you know you are loosing another part of your husband. We have a cabin up north Wisconsin, by a daughter and grandkids. When we go up there we go for at least 10 days, Tom can not adjust well so we can’t go for shorter, just to hard for him.Anyway our caregiver can not do overnight and can not go with us. It is getting to much for me to do everything at the cabin and take care of Tom, even with the help of the kids. We have HUGE bathroom issues that he will only let me do or a caregiver. I totally get that.So now we are at another bridge, do we get someone 5 days 8 hours with occasional overnights or do we jump in and go to a live in….yeeeks not sure if I am ready for someone here 24/7. But I like you when I am on duty after 4 every day all day Thurs and Sundays can not go far. Tom at this point is paralyzed from the neck down. He has limited use of his left hand. He has no lesions in his brain so congnative skills are great. If we did not have a voice actavated PC he would only watch TV and listed to books on tape. I hate leaving him. I don’t get to church anymore. I hope I can help you and others get through some tough decisions. Been where you our, feel your pain. We too only have people at our house which is nice but not always easy for me. I get tired of entertaining.I have never been on any of these sites. Was just looking for someone that understood where I was coming from. We too have great friends and support group but try as they might they don’t really get it. How can you if you have not walked the walk.I will tell you I thought when we were where you our now it was the hardest, mentally and physically. If that gives you hope. After we adjusted to Tom being disabled we were able to move on to the best of our ability. I once went to a counselor who told me” Rob don’t be so hard on yourself , you are doing a wonderful job with Tom. You are in a constant state of morning. ” I think of that often and she is right. The trick is not letting it get the best of you. Good luck hope this helped in some small way. I am sure you are having a lot of the same thought all of us do, sometime mine make me feel guilty but I guess that all goes with the progression of PPMS
Thank you so much for sharing your story. It sounds so much like my own and truly provides comfort in knowing others understand the issues. God bless you and Tom for your patience and perserverance.
I am so glad we can connect this way – praying for you both that soon something wonderful will help lynn’s health.
He is actually doing better on the MS diet so we are hopeful that will continue. Hope to see you and Randy soon. Miss you both.
Excellent and poignant entry. How true, I suspect we all can point to that ‘one day’ that changed everything. Thank you for sharing.
Caregivingly Yours, Patrick
Thank you for sharing that. Did you know that they have assistance dogs for people with MS. One of the first things I read about when I was diagnosed was this and I thought, hmm a golden retriever that behaves…that would be refreshing! Maybe Lynn could be more independent with the help of a furry friend.
Thanks for that suggestion. We actually looked into getting a therapy dog but found out that Lynn would also have to be “trained.” It required him to be at the training center for two weeks to learn to handle the dog and right now, it would be difficult to do that. However, we are keeping that in mind. It’s a good idea.