A number of you have talked about being both the person living with multiple sclerosis and are a caregiver for someone else. Recently I also shared this dual role. Normally my spouse and I with our own medical needs are able to take care of ourselves but his health had a couple major interruptions recently that forced that role to change.
The month of December found him feeling sluggish and worse, and eventually I took him to the emergency room where he was diagnosed with pneumonia and hospitalized for four days. I was able to be there and observe the system from the outside and was surprisingly happy with the medical care he received. I brought him home and he slowly eased back into being well enough to undergo hip replacement surgery in early February.
From the advance appointments with the surgical group we knew he was in good hands and anticipated a speedy recovery. What I wasn’t prepared for was the speedy discharge. Turns out these days hip replacement is often done as outpatient surgery… it is so routine the surgeon told me in the waiting room before my husband was even out of recovery, that he would probably go home the very next day, less than 24 hours after surgery.
“But wait!” I protested to the surgeon and to anyone who would listen that there were a number of obstacles to my bringing him home quickly - the short list was:
- We had an 80 mile drive to get home and he had to have pain under control
- Our shower and bedroom are on the second floor of our home and he has to climb stairs to get to them
- I have MS and am unable to adequately handle him without fall risk for us both
My insurance authorization was for two days and we weren’t under that financial pressure to get him out of the hospital yet from the very beginning everyone on the medical side was insistent he would go home in 24 hours or less. He was granted one more day at the hospital because the pain was not under control and he was initially unable to climb the steps that physical therapy had set as one of his goals. But he was still discharged after only 48 hours. They kept him as a patient less than half the amount of time he was treated for pneumonia.
So on day one I am home with him and we make it upstairs to bed. For the next nine hours he is awake every 60-90 minutes with pain and the need to use the restroom, both of which required my attention. The second night home was better – he made it 90-120 minutes at a stretch before waking me for help. Our third night we took a giant step back because he spiked a fever and there were numerous pains that were taking over again. Sleep was sporadic at best.
During the day he naps but I am unable to. There are things that need to be done while he gets some rest. Needless to say I am feeling a bit tired and I can’t blame the usual MS fatigue. This experience as the caregiver is humbling – it allows me to see how much I can do but it is also obvious that I can’t do this for many more days without harming my own health.
Which leads me back to my opening and my point in sharing this -
Many of you reading this are caregivers all the time and you have MS or other chronic diseases. Our health care system and providers must stop and look at the entire family when they are treating a person such as my husband post-surgery. Fortunately I have family members who will step up and help if I just ask, but not everyone is in that same situation. We need to offer support to the caregivers who have their own special needs and not just assume we can work it out on our own.
The medical experts need to stop and look not just at their patient, but treat the entire family as part of the bigger picture of care. I know my husband will improve and we should get back soon to our usual ways, but for many of you the role of caregiver is not just temporary but a permanent state. I hope you have found ways to get the support needed to make it through the days and especially the long nights.
Wishing you well,
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