One of the ways we cope with Lynn’s condition is to deal with what we have “today” and not look too far ahead. That’s especially true for Lynn; not as much for me. My personal make-up requires that I have a sense of control about my life so I ALWAYS look ahead and plan for what’s coming up. I hate surprises and am not an impulsive person, at all! While that works for me, Lynn doesn’t want to think about the future. He might plan for projects that he wants to do but he doesn’t want to really look at the future. He’s almost, but not quite, the type to bury his head in the sand. That’s especially true when it comes to MS.
Ever since he was diagnosed with multiple sclerosis, he has not wanted to learn anything more than he needed to know to manage his symptoms for that day. I was on-line reading all I could find the day we got home from the doctor’s office with the diagnosis. Not Lynn; he didn’t want to know anything about it and would ask me to close the screen if he came into the room. Part of that, of course, was the fact that he had “lived” MS with his father who had died in his 40’s after a very progressive battle that put him quickly into a wheelchair and then a bed where he stayed till he died of complications. It’s Lynn’s philosophy that if you are told about negative things that “could” happen, you’re more likely to subconsciously progress in that direction. I can see his point of view on that so I try not to bring up symptoms he does not currently have and I don’t talk about disease progression. When he talks about being able to stand independently or do this or that (things he has not done in over two years) then I mutter encouraging words, try to help him with his physical therapy toward that goal, and try to support his mental hope. Then in private, I continue to research what might be causing any new symptoms I might see and look for disease modifying therapies or devices to assist in his daily care. I also admit that I DO think a lot about future care even though I try not to.
Currently, I am very fortunate that I can work from home and I have his family who comes in twice a week to help. His mom and sister come on Mondays and his son comes on Wednesdays. They are a God-send because on Mondays I have a lot of things scheduled that take time and it helps to have Lynn’s needs being met so I can focus on those things. On Wednesdays I usually go into my office at work for any face-to-face meetings I might need to attend and to just remind people that I actually work there. However, I know at any point that assistance may no longer be available. His son could get a job that required him to physically be at the office very day (he currently works from home and just works here on those Wednesdays). His mom could get sick or his sister change jobs and they would no longer be available either. My daughter used to help out but now she is a full-time caregiver for her son who has special needs and she can’t really manage his care and Lynn’s except for short periods; certainly not on a regular basis. I had a friend who used to come regularly to stay with him a few hours each Thursday but her personal demands have changed and she can rarely come any more. Therefore, as time goes by my options for support have had a way of dwindling down. That’s pretty common for long term conditions. People can help temporarily but long term is another matter. So, I know that at some point, I’ll have to figure out how to pay for someone to come to my home or come up with another solution.
It’s discouraging the way resources are made available to those who do not work but for those of us who try to pay our own way, we can’t get any help. For me to get assistance, I would need to quit my job, go on welfare, and maybe declare bankruptcy. I currently spend a lot of money on supplements that have really improved Lynn’s health but which are incredibly expensive! I’m spending $3-4oo easily each month on supplements. Then there’s the grass-fed meats which are more expensive, medication co-pays, assistive devices that we find useful but which are not covered by insurance, and so many other expenses that to think about trying to come up with money to pay someone to stay here while I go into work, is mind-blowing… so I just don’t think about it yet. I’ll deal with it when I have to since nothing is going to change between now and then…or could it?
A caregiver support group formed at my church in April. We meet once of month. In the group, we have one person whose spouse has a heart condition that limits his functioning, another whose spouse had a brain injury who needs significant support, one whose spouse has Alzheimer’s or something similar and three who had parents with cognitive or physical impairments needing care. Since April, two have lost their loved ones and another has had a series of heart attacks which are limiting his life expectancy to months instead of years. As I told Lynn of each of these occurrences, I could see him becoming more and more concerned.
Our last meeting of the group was held at a rehab facility where two of the group had recently placed loved ones. When I told Lynn about the one going into rehab and the issues associated with trying to take him home (his house is not handicap accessible with multiple stairs to get into the house and significant restrictions inside for using wheelchairs, lifts, etc.), I could tell it really bothered him. Later that day he shared that he was scared. He’s so afraid that one day he will have to go into a nursing home. He knows that even a well-run and high quality nursing home would mean he would get limited attention and would often be uncomfortable (he has A LOT of comfort needs. It’s very difficult for him to feel comfortable and I’m forever adjusting this, moving that, changing whatever). He also knows that he would feel isolated from family and friends because they would not be around all the time like I am now. He sees this happening to someone he knew who was able-bodied long after Lynn was unable to care for himself and it brings home to him how quickly things can change.
I assured him that as long as I’m able, he will never be put in a nursing home and that even if something happened to me, I’m sure the kids would take him in and work together to care for him. The reality is that I’m sure they would want to do just that, but could they? They have jobs; they need to work. They could not get financial assistance to care for him in their homes; just like I can’t, but they could get assistance if he was put in a nursing home. How crazy is that? It’s much more expensive to pay for inpatient care than to have a caregiver come to the home for a few hours but the more expensive one is an option, and the money-saving one is not. Short-sighted? I would say so.
At any rate, I think my assurances helped him not feel as insecure. He knows I’m overwhelmed with all I do and he knows my physical condition is deteriorating due to the wear and tear on my body from lifting and lack of sleep so he knows that I may mentally be willing but physically may not be able to do so.
So, what was my advise to him? The same as always and the only thing that’s sure. Just trust in God to take care of us when we need Him to do so. He hasn’t failed us yet and He won’t fail us then. I don’t know what the future holds for us. I know Lynn’s likely to get worse instead of better. I know I’m likely to have problems that interfere in my ability to care for him. Can I do anything about that now? No. So I’m going to move forward in the manner I’ve used to cope so far…I’ll think about that later; not now. For now, today, I have work to do. He needs to be fed. He’s calling me to cath him. I need to do some “work” work and I have some meals to prepare. That’s enough for today.