One of the joys of having a progressive disease is that everything changes. Just as you adjust to one change, something happens and the “fix” you had in place is no longer working. As Lynn’s caregiver, I have not found his physician to be particularly helpful in warning me about things to come. If I ask about an issue, he will give me a prescription or a referral but he’s not much on home remedies or being proactive on warning on what I might encounter. Therefore, most solutions I come up with are things I stumble across and come up with myself and are not recommendations by doctors so you might want to talk to your doctor before you decide to do anything I mention here.
Now, my take on waste management…
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For the most part, our home life is fairly stable meaning we have the same things happening day in and day out. We have a routine – I get Lynn up for the morning and help him with his exercise, take him to the bathroom for his bowel regimen, put him back to bed and do a partial bath including skin care, and he takes a nap to recover from that activity. It takes about three hours to do all that. None of it is complex (except sometimes the skin care) but most of it is very physically demanding and Lynn can do nothing to help with it except cooperate with what I do to him. Once this morning routine is completed, the rest of the day is pretty basic attendant type care (assist with eating, getting things to drink, changing position, helping him write, etc.). At night, the work increases again with preparing meals etc., for the next day, bath time, night time rituals, etc. Including my own personal care and feeding, it takes about five hours to get it all done and get us to bed. Again, the work is not complex care; just physical and time consuming. None of this is complicated but all of it is necessary to maintain quality of life that is not miserable every minute of every day till you die so it’s very important stuff. It is also stuff that if you cannot do on your own, is very, very expensive to have someone else do for you unless you are fortunate enough to have family or friends to help you out.
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Some of you have noticed that I have not been writing for a couple of months because you have sent me messages asking if I was okay. Thank you very much for checking on me. It’s humbling to know there are people that I don’t even know who care about me and lift me up in their prayers. Thank you.
It’s been about two months since I last wrote. During that time I have been in the emergency department three times for abdominal migraine attacks that I could not control at home. I started having attacks of severe abdominal pain in February. Initially the ED staff thought it was appendicitis but that was ruled out on CT. The next time it occurred in March, they thought maybe I had an intestinal infection because they could see two areas of thickening on the CT and my white blood cells were elevated. I was given a course of antibiotics and an anti-fungal (to be on the safe side) and survived the additional trauma of a two week encounter with their side effects. I was feeling pretty good about things when in May it happened again and the ED doctors said they didn’t have a clue what was going on; I should see a gastroenterologist.
It took a while to get a specialist appointment but I saw someone around the first of June. Five minutes into my visit, he said, “You have abdominal migraines.” What in the world is that? I thought to myself. He went on to explain that they are similar to headache migraines; same mechanism of action. There is usually an aura (Yep, I had that), they come on and get progressively worse and then go away with or without treatment (that seemed to be true), and between episodes everything was perfectly normal (Yep, that was true, too). Abdominal migraines usually affect children but can affect adults who have chronic migraines as well (that was me). Great, I now had a diagnosis and a series of medications to try when I had an attack. What I have found so far though is that the medications are either not strong enough or I’m waiting too long to take them. As with every new diagnosis, there is always a learning curve required before you find the right treatment plan.
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Every time Lynn starts acting differently for several days in a row, I start to wonder if it means there’s some new problem we have to face. MS can affect so many different body parts and functions that I just never know if a new problem is MS or something else.
For instance, Lynn has been sleeping a lot. He talked to his dietitian who thought he needed more protein in hisdiet; so, we added two protein shakes a day. He loves them and he is putting on a little more weight (he lost a lot dieting and not tracking how much he was losing) which is probably a good thing, but he still sleeps much more than he used to sleep. Now, I know MS causes fatigue and I know that our sleeping habits are poor because he wakes so often to empty his bladder but is this just the natural order of MS; lots of fatigue leading to the need for more sleep? Should he sleep this much if he’s tired or does sleeping a lot cause him to feel tired? Could be either. Should I be concerned or just let it go as part of the normal course of MS?
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I admit my life is very busy and very difficult. I also admit I manage it pretty well, but just because I have to do some pretty difficult tasks day after day and I keep doing them, doesn’t make me an angel. I realize that most people who are not full time caregivers are amazed at what I do and how I manage but that just means I know stuff and I have abilities and that God blessed me with a servant’s heart that allows me to meet these challenges without quitting. It does not make me an angel.
I bet if you’re a caregiver, you’ve been called an angel a time or two, also. It’s a compliment that is intended to reward you for all your hard work, and I admit, it sounds nice, but when someone tells me I’m an angel, I’m embarrassed and I feel guilty because I’m far from being an angel.
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I always have guilt feelings when I write about any negative emotions I feel in being a caregiver but the fact is, I have them and I expect most other caregivers have them as well. It doesn’t mean we don’t love the person we care for but it means that providing care is not always a piece of cake. If you’re a parent, it’s similar to loving your kids but being angry at them for scratching the car and sometimes seriously thinking of selling them to the lowest bidder. You would NEVER actually do it and would miss them beyond words if they were not around but the fantasy…well, sometimes the fantasy helps to get past the moment.
Feeling lonely is like that. I’m actually rarely alone which is one of the reasons why I feel lonely. I am responsible for Lynn 24/7/365; just like a parent of a small child. Whereas children grow up and leave home, adults with disabilities do not unless they become too much for the caregiver to handle (and that’s not something any of us want to have happen). So, you would think having Lynn with me all the time for companionship, I wouldn’t be lonely but I am at times.
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Posted in Emotional Effects, Relationships
Tagged alone, Caregiver, Caregiver Support, Depression, Family caregiver, Grief, Multiple Sclerosis, Respite care, stress, work/life balance
There are a lot of responsibilities and consequences in being a caregiver that I don’t like; things I would prefer not to do or which are difficult to manage, but the biggest challenge I have is lack of sleep. I think that if I had time to sleep more, my life would be a lot different.
Typically, I get five hours of sleep a night. If I were to have an opportunity to sleep through the night without interference, I would probably naturally wake up after nine hours. Nine hours is more like the “sleeping in on Saturday morning” days I remember back before children and back before Lynn became disabled. When I was going into work in the days before Lynn became immobile, I usually got eight hours and certainly at least seven of sleep a night unless someone was sick or we had been up for some special occasion. I remember those days fondly. I felt good. I had energy. I felt rested and refreshed when I awoke each morning ready to take on the day.
I miss those days.
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