Thank you to Sophia Nuamah for submitting the following guest post for the MS week. I appreciate her support for multiple sclerosis research and the The basic unit in society traditionally consisted of two parents and their children but the family has now been expanded to include any of various social units differing from but regarded as equivalent to the traditional family. More of caregivers around the world.
Ms. Sophia Nuamah
80336 Munich, Germany
Care and treatment provided to individuals with long-term continuing health problems. Rehabilitation facilities, nursing homes, and mental hospitals are often considered chronic care facilities. More diseases such as MS are usually termed as Invisible illness because so many people sometimes, don’t even believe you’re sick because the symptoms are not seen.
People diagnosed with MS can sometimes develop complications like Mental changes, Depression is an illness that involves the body, mood, and thoughts. In addition, depression affects how a person eats, how much he sleeps, what he feels about himself, and how he thinks about things. Depression is not the same as a passing blue mood. It is not a sign of personal weakness, or a condition wished away. People with depression cannot merely “pull themselves together” and get better. Without treatment, symptoms can last for weeks, months, or years. A mood disorder marked especially by sadness, inactivity, difficulty in thinking and concentration, a significant increase or decrease in appetite and time spent sleeping, feelings of worthlessness and hopelessness, and sometimes suicidal tendencies., Epilepsy, MS tremors, problems with speech and swallowing, Paralysis (typically in the legs), etc.
Some even experience relapses as they experience new or worse symptoms; and may experience some degree of reduced mobility at some point in time, and this can make everyday tasks difficult or even impossible without help.
Caregivers are noteworthy because of the critical role they play in the lives of people diagnosed with MS because there comes a point in time when they need extra help in performing normal daily activities.
Caring for someone with MS is physically and emotionally challenging. When you’re giving care and support to someone else, it is mostly very easy to disregard your own wellbeing. But it’s really important to look after yourself, mostly because staying healthy means you’ll be able to continue giving care.
Some of the ways to help maintain your physical and mental wellbeing are to take a break when needed to look after your health, renew your energy to be able to keep on with your caregiving and get help/support from others, to make sure you’re not doing everything by yourself.
For people living with MS who care for themselves, it is very important to get a support system and build social relationships to help you through the challenging stages of the disease.
Talk to people- this could be a friend, family member, a professional, or someone else who is also diagnosed with the disease or has experience in giving care; as MS can have a big impact on the people close to someone who’s living with the condition (family/friends), especially if they start to rely more and more on support from them every day.
Both people affected by MS and caregivers find that it helps to talk about their feelings and experiences of caring for themselves or other people.
Nevertheless, there have also been some technological advances in helping people diagnosed with MS manage their condition better to live normal productive lives like medication reminders to efficiently follow their treatment plans and smart devices- installed in homes to counter the problem of reduced mobility.
All these are signs of progress and hope for those living with MS, who have suffered in silence for so long; and though there’s a long way to go when it comes to invisible illness like these, Increased public awareness and more useful tools like this are making life easier for the people with them.
Similar health historiesAbout eight years ago, I meet the caregiver while my husband, Lynn, was a patient in Intensive Care (ICU). Her husband and Lynn shared similar histories (both had Primary Progressive MS – PPMS), though her husband was much younger. During the month, Lynn was a patient in the ICU, the caregiver and I had many conversations about the challenges of being a spouse/caregiver. It felt so good to be able to talk openly to someone else about how I felt about my new role, especially about my fears related to Lynn being in ICU. Those discussions lead me to start writing a blog about the struggles of being a caregiver with the hope of connecting with other caregivers in similar situations. Continue reading at: https://multiplesclerosis.net/caregiver/end-life-planning/
MS improved our marriageWhen we first were married in 1997, Lynn and I had difficulty bonding because we were both very independent. Our marriage struggled because we did not “need” each other. Having each been married previously, we were capable of managing homes and children without partners; therefore, adding one to the mix required significant adjustment on everyone’s part. Continue Reading at: https://multiplesclerosis.net/caregiver/choice-control/
- Today our primary mode of communication seems to be through text messaging or tweets. We use short abbreviated bursts of information delivered remotely.
- Texts and tweets allow us to keep our distance from each other. When we text, we send the message to an unseen recipient who experiences an emotional reaction we don’t have to acknowledge.
- Individuals fear to share how they feel about issues due to concerns about being ridiculed, rejected or embroiled in conflict. In today’s society, we do not know how to cope with these emotions; therefore, the fear of them leads us to avoid them if at all possible.
Unreliable attendanceLiving with MS means a lifetime of unpredictability. You may feel perfectly fine when you go to bed, but sometime during the night, a significant front moves through the neighborhood wreaking havoc on your body. Suddenly, getting out of bed to go into work would require the assistance of a powerhouse Olympic team, only they didn’t happen show up at your door to lend a hand this morning. Therefore, not only can you not go into the office, but neither can your caregiver who has to stand-in for the Olympic team and help out. Continue Reading at: https://multiplesclerosis.net/living-with-ms/how-fmla-can-help/
I act as my husband’s medical decision makerMany times, I’m expected to act “in the place of” my husband. I’m his medical decision maker and his power of attorney.
Continue reading at https://multiplesclerosis.net/caregiver/decision-making-rights/
Four-wheel drive powerchairWe have a $12,000 monstrosity my husband calls his four-wheel drive powerchair. We bought this large paperweight in 2009 but never used it because it came programmed incorrectly. Advertised as able to climb stairs, speed through sand, and out-maneuver muddy driveways without a hitch, the Predator is a basic, metal framed chair with no padding or seat, equipped with headlights, turn signals, a horn, and the ability to raise or lower its height. It’s very ugly. However, at the time, similar models were not available for the stated price in America, and Lynn desperately wanted a way to be able to go fishing. Continue reading at: https://multiplesclerosis.net/caregiver/hope-regret-powerchair/
I guess most of you who have read my column in the past think I’ve stopped writing. I have to admit that I’ve considered whether I should do that because my time to do anything at all these days is so limited but the publishers of this site are so kind and they have asked me to share my stories whenever I get the opportunity so I’ll keep doing so for as long as I can.
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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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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 in that they have the 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 medicines 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 his diet; 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?
Continue reading at https://multiplesclerosis.net/caregiver/something-new-to-deal-with/
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
• feelings of deserving blame especially for imagined offenses or from a sense of inadequacy;
• a feeling of deserving blame for offenses;
• the fact of having committed a breach of conduct especially violating the law and involving a penalty
More 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 to have Lynn with me all the time for companionship, I wouldn’t be lonely but I am at times.
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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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Often when I meet someone who has just become a caregiver, they ask me how I do it; “How do you handle the daily stress of working and caregiving full time while still managing a home?” I always reply, “I try to take it one day at a time and just deal with what’s happening that day.” Pearls of wisdom, right? Well, I’m here to confess, I apparently don’t deal with stress very well so I’m not sure that I should be giving anyone any advice on this subject. I’ve been caring for Lynn full time since 2009 and I can tell you, it’s starting to take its toll. Here’s my confession.
I do not take things one day at a time. I try to but I’m not very good at it.
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I’m sure you have heard others reference the saying “turn lemons into lemonade.” It implies taking something bad and turning it into something good. Our pastor challenged us to think along those lines but with a different twist. When something has you down or something bad/inconvenient happens, try thinking about why that’s a good thing. I have to admit I have difficulty doing that much of the time but each day I try to think of at least one thing good about that day, be thankful for it and share it on my Facebook page. It helps me to, at least once a day, think of something positive. I’ve been pretty negative lately because Lynn and I have not been feeling well and I’ve spent three weekends in the last two months in the emergency department without any answers regarding what is causing me to have abdominal pain. I know it’s nothing serious but I don’t know what it is and I’m getting tired of it. Anyway, I’m also tired of being so negative. Therefore, my post today is my attempt to take this challenging period in our lives and make it into something positive. Here goes….
I am blessed that I have been in the hospital three separate times for three overnight stays because it has allowed my The basic unit in society traditionally consisted of two parents and their children but the family has now been expanded to include any of various social units differing from but regarded as equivalent to the traditional family. More and me now to have a trial run on what we would do if I was sick for longer than overnight.
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In the past month, I have been taken to the emergency room twice with severe abdominal pain and vomiting. Each time they ruled out appendicitis (thank goodness) but obviously, something is wrong. At this point, they believe I have two locations in my intestines that are infected which is causing the pain so I’ve been put on two very strong antibiotics that may kill me before the ten-day treatment is up. Each day I struggle to keep going. Each day I battle nausea and the discomfort caused by the antibiotics. Each day I have to find a way to get everything done that Lynn requires because if I don’t, it won’t get done.
People tell me to call if I need help and I have and they have but they can’t be expected to stay here 24/7 while I recover. They have to work. They have home responsibilities. They have their own challenges and illnesses and life to endure. It’s not that I don’t have wonderful people to support me; I do. It’s just that there is so much that must be done to keep our routine going.
Continue reading at https://multiplesclerosis.net/caregiver/i-just-keep-going-and-going-and-going/
I was talking to a fellow caregiver this week about an event that occurred to him and he made the comment, “Yeah, I’m just waiting for the next shoe to drop.” That comment really struck home. I confess; I’m like that most of the time. Lynn, my husband and the person I provide care to, accuses me of being pessimistic but honestly, if I don’t expect the worst, then I won’t be prepared if it occurs. It’s a matter of self-preservation from my perspective. I do admit though that I can take it too far.
Lynn has gotten a double dose of baclofen in his pump to reduce the number of spasms. Baclofen is a muscle relaxer. Not only does it relax muscles, it makes him sleepy. Therefore, he sleeps h-o-u-r-s at a time, wakes up to eat, and then goes to sleep again.
My, “what if,” talk in my head goes like this…
He sure is sleeping a lot. Shouldn’t he have adjusted to the dose by now? It’s been a month. Maybe it’s something more. Just because he has more baclofen on board doesn’t mean that’s what is causing his sleepiness. I think I should check to make sure he does not have a urinary tract infection that is not showing up yet. I wonder if his CO2 level is too high? With his sleep apnea, he might be retaining carbon dioxide which would make him sleepy. I’ll have to make sure he’s oriented when he wakes up. What if it’s something new?And on and on and on….
Continue reading at https://multiplesclerosis.net/caregiver/waiting-for-the-next-shoe-to-drop/
It’s been the talk for days. “Have you heard? We might get a foot of snow.” The prediction was for it to start before sunrise on Friday, then changed to 10 a.m., and then to 1 p.m. Two days before the snow was predicted, lines at the grocery store were wrapped around and down aisles. All were preparing for the great storm to come.
For those of you who live in the north, a foot of snow is, “Much to do about nothing,” I’m sure, but for those of us in Central/Eastern Virginia, we rarely get deep snows so for us it’s truly a big event. There’s a mixture of excitement but then also dread for the days after. Our road and power crews do an awesome job and truly do their best to keep everything moving but since snow storms happen so rarely, they only have so much available to them. With this storm in particular, it was predicted to hit all of Virginia so pulling from one area to another is not really a possibility. Therefore, I had to plan for whatever might happen knowing we would be on our own for a while out here in rural Virginia.
Continue reading at https://multiplesclerosis.net/caregiver/its-snowing/
I had a scare this week thinking that I was about to experience the joy of food poisoning. As I was giving Lynn his bath, I started feeling really nauseous. Then my stomach starting burning and feeling crampy and I started sweating—all the tell-tale signs of food poisoning when you’ve recently spent hours sampling leftover food as you clean up from the day’s festivities. As it turned out, it did not develop into the dreaded torture of food poisoning and probably was a reaction to eating too many rich food products the same day on top of eating them several days previously. However, the experience brings into focus that as a caregiver, I can’t just get sick. As I’m preparing to be sick, I have to prepare Lynn for me to be sick. Let me tell you; that just does not seem fair….
Continue reading at https://multiplesclerosis.net/caregiver/i-cant-just-get-sick/
The final stage of experiencing loss or grief is acceptance. Some people never get there; some get there quickly. Most of the time people step into and out of acceptance at various times based on what is happening around them or new challenges they face associated with the loss.
For the caregiver, at least my personal experience, is that I moved into the acceptance stage long before my husband did. In fact, I’m not sure that he’s actually there yet. I know he has finally accepted the fact that he has MS but I’m not sure he has accepted the fact that his physical limitations are permanent. And maybe that’s a good thing. He continues to exercise muscles in anticipation that he may one day walk, or sit up independently, or be able to use his writing hand again. If he didn’t have this hope of being able to regain some function or of being able to not feel so miserable all the time, I’m not sure that he would not slump into a severe depression.
I’m starting my “staycation” today. You know the kind; where you vacation at home so you can get things done that you never have time to do when you’re working. We normally vacation at the beach each year with our children but when the time came this year to pay off the rental, we realized that though we had some good times when we were there, for Lynn, most of the experience was exchanging one bedroom view for another with a lot of recovery time thrown in without access to all his special needs supplies (though it felt like I packed the house each time we went.) We decided the work involved in going and having to work around his special needs while there would not be offset enough by the short periods of time that we had available to enjoy time with the The basic unit in society traditionally consisted of two parents and their children but the family has now been expanded to include any of various social units differing from but regarded as equivalent to the traditional family. More. We enjoy having the kids around but often they were in another room or outside so we didn’t really have them around that much. So we cancelled the condo at the beach (lost $3000 in canceling the date but in the long run we preferred the loss to going.)
At first, I thought about not taking any time off at all since I use my leave time fairly often to take him to appointments or to provide his care, but then realized it would be a great opportunity to get some things done around here, so now I’m really excited about it.
My main goal for this staycation is to clean out my garage so I can move items from the spare bedroom to the garage and move things from another bedroom to the spare room. All this moving around is in preparation for installing an exercise pool. An exercise pool, mind you, that I don’t want but one that Lynn has his heart set on getting.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-commitment/