Physical effects

Physical consequences of being a caregiver

What Goes In Must Come Out

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…

Continue reading at

 https://multiplesclerosis.net/caregiver/what-goes-in-must-come-out/

Did You Miss Me?

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.

Continue reading at

 https://multiplesclerosis.net/caregiver/did-you-miss-me/

Something New to Deal With

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/

Lack of Sleep. The Root of All Evil?

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.

Continue reading at

 https://multiplesclerosis.net/caregiver/caregiver-perspective-lack-of-sleep-the-root-of-all-evil/

Give Me a Hand

Someone asked me recently if I had ever written about how we adapted to Lynn’s loss of function in his hands. I haven’t, but it’s a topic that might be helpful to some, so here goes.


Lynn’s loss of the use of his hands gradually progressed over time. I’m guessing the decline occurred over maybe 3-4 years with generalized weakness initially and now no strength to speak on either side.

 

He has almost no function in his left hand/arm and minimal in his right hand/arm. I think he started noticing a decrease in responsiveness about the time of his 2006 diagnosis. I say that because I came in one day to see him comparing the speed at which his fingers would move between the two hands.

 

It was that sight that made me realize that his weakness was not just in his legs. I demanded that he see a doctor because no longer could he insist it was just his sciatic nerve. As I told him, sciatic nerves do NOT affect the shoulder, arm, or hand movement, so it was more likely to be a problem in his brain or upper spinal cord. He agreed, and so came his first MRI and the diagnosis of MS.

 

Continue reading at https://multiplesclerosis.net/caregiver/give-me-a-hand/

I Just Keep Going and Going and Going

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/

Waiting for the Next Shoe to Drop

Caregiver feelings of depression, being overwhelmed and lonliness

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.
Scenario:
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/

I Can’t Just Get Sick

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/

Watching, Waiting, Being Strong

It’s funny how words or pictures will bring back such vivid memories. The Cultural Arts Department at work sponsored a poetry/prose writing contest recently with the theme, “Rhythm.”  I don’t usually enter such contests but when I thought about the theme, it brought back memories of standing next to Lynn’s bed while he was in the ICU about three or four years ago.

That year was terrible. Just after Thanksgiving, Lynn was admitted to the ICU due to a urinary tract infection gone wild. He had been using an external collection device instead of an internal intermittent catheter thinking it was less likely to cause infections.  Well, he got one anyway.  He saw his urologist who confirmed the diagnosis and gave him antibiotics.  It didn’t help.  The urologist took a culture the next visit and kept Lynn on the same antibiotic.  This went on for three weeks while he got sicker and sicker; pus coming out each time he urinated.  The urologist said he couldn’t figure it out but if I wanted to call the Epidemiologist, go ahead. So, I did; turns out the urologist didn’t read the culture.  If he had, he would have seen that the bacteria Lynn had was resistant to the antibiotic he was taking. (Another good reason to push back if your care isn’t going the way you think it should.)

Unfortunately, getting the right diagnosis was too little too late.  By the time the infection was showing improvement, Lynn was not eating, extremely weak, and felt so terrible that HE asked me to go to the emergency room (He never wants to see a doctor so this was a big deal).  He told the Emergency Department doctor he couldn’t eat because he felt like he could not swallow.  They thought he might be having an exacerbation.  Into the hospital he went in order to get a nasogastric (NG) tube inserted to feed him.  Shortly after insertion, he coughed the tube up part of the way into his lung as he was receiving a tube feeding and ended up with pneumonia.  The pneumonia lead to septicemia and he ended up in the ICU with a body temperature of 90o; yes, I said 90o. Three long weeks after this admission, he was released home; very weak and still not feeling very well.

Three months later, we were back again when he just couldn’t stay awake. I had been saying for a few weeks that I thought he had sleep apnea pretty bad so he saw a sleep specialist and was put on CPAP and then advanced to BPAP. His lungs were retaining large levels of carbon dioxide even with the respiratory support. The respiratory therapist who knew him from a prior admission, let me know that his lung capacity was significantly less.  As his CO2 levels continued to rise, I was pulled aside to let me know that if they could not stop the continued elevation cycle, they would have to put him on a respirator. They called in an anesthesiologist to evaluate and he recommended a change in his setting on the respiratory support being provided.  They wanted to give that thirty minutes to see if it would work but then it was either put him on the vent or he would likely have a respiratory arrest.  The following story I wrote for the contest, describes how it was to wait those thirty minutes.

continue reading at http://multiplesclerosis.net/caregiver/caregiver-perspective-watching-waiting-being-strong/

Caregiving From a Different Perspective

Each of us filters information through our previous life experiences. Through those filters, we evaluate comments made and inferences perceived and eventually make conclusions based on those filters. We also tell ourselves stories about what we see and hear based on those filters and it’s through those stories that our emotions are generated.
That being said, each of us will read a blog and get something different out of it. We will pass judgment on the writer and the content based on where we are in life and what we believe to be true at that moment. As I have been writing my columns, I have had a growing concern that what I share may be misinterpreted or may even cause pain to readers who take in what I share from the point of view of someone who has MS. When I share my “story,” it’s from the point of view of the person who cares for the person with MS. Essentially, I have MS by association. I do not have the muscle weakness, the spasticity, the loss of functioning, but I have equal impact as my husband’s full timecaregiver. I do not for a minute think I have it worse than he does. I could walk away from this situation (though I choose not to), but he cannot. My image of myself, my career choices, my plans for the future are not made based on my own limitations but every choice I make, I make with his limitations in mind.
I pledged to Lynn before God and our families that I would love and care for him in sickness and in health. I meant it. I never considered leaving when his condition deteriorated to the point it is now. I want to take care of him and I put his needs first in everything I do. I feel it is a privilege to be able to give myself over to the care of my husband whom I know would do the same if he could for me. However, that being said, this life is not easy. It’s incredibly difficult. I, alone, am responsible for ALL his needs. He only has use of his mind and his left hand and arm (and that’s before lunch each day; by lunch time, he can’t use them anymore either). I have people who come in and help me for a few hours during the day so I can continue to work full time from home. However, they do not provide for any of his physical care other than to feed him. Don’t get me wrong. What they do for him saves me a lot of time and allows me to focus on work during normal work hours rather than late at night; however, if there is a problem, I still take care of the fix.
Though, I have pledged to care for Lynn and do so willingly, I get frustrated. I get angry. I get depressed and overwhelmed when he feels bad and demands more attention that I have the energy to give.  When he asks me to adjust his inflatable cushion so that his bottom doesn’t hurt, he expects me to know, I guess by instinct, whether to add more air or take more away. He can’t tell me what to do. He looks to me to figure out everything he needs and while I understand that after he’s sit for a long time on a cushion till his bottom is either numb or painful and he can’t “feel” it anymore, it’s frustrating to be called away from cooking or from participating in a conference call while working so that I can provide a fix that I don’t know exactly how to provide. I am very adept now at cathing him while discussing highly sensitive issues during a conference call and balancing the phone with my head while I use my hands to do a sterile insertion. I often have food cooking on the stove, while I’m scratching an itch somewhere on his body and formalizing a response to an issue to give when I can get back to my email. I get angry when he sits there watching TV while I administer to his care, I finish up to leave with my arms full of supplies, and he says, “Oh, before you go I need…” I get depressed when I ache all over because I’m coming down with something, I’ve had 4 ½ hours of sleep, and still have several jobs to do and all I want to do is lie down and rest but I can’t. I get depressed when everyone from work gets to go to conferences or gets “atta boys” for what they do and I don’t because I have to stay home, out of sight/out of mind, and I feel unappreciated. I admit, I do a lot of “poor pitiful me” self-talk before I even realize what I’m doing which is unhealthy.
continue reading at: http://multiplesclerosis.net/living-with-ms/different-perspective-caregiving/

Am I Competent to Do This Job?

I earn a living by working in a hospital in the department of Human Resources.  Hospitals are heavily regulated and one of the most stringent agencies who monitor us is The Joint Commission. One of the standards they have for human resources is that it’s our responsibility to determine if the people we hire are competent enough to safely do their jobs. I won’t bore you with the details on how that’s done but in working on a project related to competency determination today, I thought about what competencies are required to be a family caregiver.  It’s not an easy job but for some reason insurance carriers and the government seems to believe that any family member should be able to be a caregiver.
Just before my father-in-law died last month, I was attempting to assist my mother-in-law in finding someone who could take care of him if he was discharged to hospice care.  We discovered that once a person is deemed not to be able to improve but instead just needs comfort care or maintenance care that Medicare and insurance companies no longer pay for help regardless of the health and well-being of the family member responsible for his care.  My mother-in-law is near 80 and has myasthenia gravis, a neurological condition that makes all her muscles very weak.  She cannot lift or move anything more than a few pounds in weight.  There was no way that she could provide care for her spouse; however, that factor was not considered by insurance and she was unable to get any type of financial assistance to bring someone in to care for him or to place him in a skilled care facility.  Why? Because insurance said he did not need skilled care; just palliative care.
I’ve found the same is true for someone who is totally disabled and cannot improve their health, like Lynn.  His MS has progressed to secondary progressive and he can do nothing physical for himself; not even scratch an itch. He is an author and writes manuscripts with the use of a verbal command program that writes what he dictates.  It’s slow going but it keeps him productive and fortunately, so far his memory has not been affected by the disease.  With Lynn needing total care and my needing to work full time to pay the bills, I looked for help that we could afford.  I now pay an individual to work six hours a day 2-3 days a week to assist him with typing, feed him, and make sure he has liquids to drink. I provide all the rest of his care.  Am I competent to truly care for him? What type of competencies do I need to keep him safe and healthy? If someone was to apply for my job, what would my job description as a care giver look like?
Caregiver Job Description
continue reading at: http://multiplesclerosis.net/living-with-ms/caregivers-perspective-competent-job/

Take Care of Myself?

While I know people are well meaning, when they remind me to “take care of yourself,” I honestly want to ask them, “Now, how do you suppose I do that?” People who have never been full timecaregivers while jointly being a full time employee and at the same time being responsible for the food, shelter, transportation, maintenance, solving problems, researching issues, managing medical care, providing entertainment, comfort, and encouragement….have no idea what they are talking about.
I was sharing this week with a colleague how overwhelmed I was over Christmas with my father-in-law dying, helping my mother-in-law find hospice and companion care for him, helping her maneuver through insurance changes, keeping a watchful eye over my Mom who has chemo every three weeks and was admitted to the hospital for fainting spells, doing Christmas activities (mainly as a respite from medical issues) and helping Lynn who was depressed over his step-dad’s impending death and who was bummed out because he could not help me with it all.  Now, don’t you think that list of “to do’s” is a little overwhelming?  Well, at the same time, one of my four employees who handled a unique function for my team resigned, I had to start recruiting for her position, a consultant was coming in to our department who needed information, and various other challenges were being thrown my way that were work related. That’s a lot of stuff to juggle in 24-hours. My usual amount of sleep was 4-5 hours a night; so I was running on empty and admittedly using caffeine pills just to keep going. …and she tells me to “take care of yourself.” …Really??  What is she expecting—for me to eat healthy, exercise regularly and get plenty of sleep?
I wonder what people think sometimes when I tell them about my life.  Do they think that I can just call up the local “help” agency and have a fully trained, caring individual come help me out so I can take a nap?  Do they think I can just say, “Lynn, see you in a few hours.  I’m off to the gym,” or that I can choose to go to bed earlier and sleep later because all that stuff I’m doing is not essential?  I guess, they think I can just say, “No.”  However, “no,” is not an option.  Have you seen that commercial where the Mom or Dad is feeling lousy with a cold and comes into the baby’s room to say, “I’m feeling sick. I won’t be in tomorrow.”? That commercial gets attention because any parent knows you can’t just tell your child you’re taking the next day off and leave them to their own devices.  Well, that’s true too for caregivers. The only difference is that when you’re a full time caregiver, there is never a “next day” when the illness has passed and life goes back to normal because our normal is high demand, adjusting to constant change, and often feeling exhausted and achy all the time due to lack of sleep and muscle strain.
Continue reading at: http://multiplesclerosis.net/living-with-ms/take-care-of-myself/

Handling Grief

I attended a webinar today called, “Grief: What Helps When It Hurts” by the Hospice Foundation of America.  I was interested in this presentation because I work with a lot of employees who have lost family members and struggle when they return to work. The focus of the presentation was about grieving the death of a loved one but many of the principles presented also apply to the grief we experience as caregivers.
The effects of grief are vast.  Grief can have a physical, emotional, cognitive, behavioral or spiritual impact. How someone reacts to grief is very individualized and impacted often by their own health, their relationship with the person who experienced the loss, and what they believe is the acceptable way to cope with the loss.  It’s a roller coaster ride that lasts a long time and may come back to hit us in the gut when least expected.  Let me share with you how grief has affected me.
First, let me say that Lynn is very alive and aware.  What I am grieving is not his death or even an anticipation of his immediate death.  What I am grieving is the loss of how he used to be.  I grieve such things as the loss of all the things he did for me, the fact that we could go out and share in activities together, his ability to be independent, and my freedom to have time to myself. I miss his singing, the drama programs we used to do together, the ability to go visit family and friends or even go to a movie.  I grieve the fact that he will never be “able-bodied” again; never able to do what he wants to do when he wants to do it. I grieve the loss of the dreams we had for a new home, travel, and financial security by the time we reached retirement.
The physical side of my grief shows up as constant fatigue, headaches, body aches (though that could be the constant lifting I do for him, too) and irritable bowel syndrome.  I also am overweight due to eating to keep my energy level up and to stay awake because I typically don’t have the option to get more than 5-6 hours of sleep a night.  I occasionally have heart palpitations and swollen ankles. It’s difficult to tell if these issues are related to grief or lack of sleep or excessive physical demands but I suspect they are all intermingled.
Emotionally I have periods of sadness, anger, anxiety, and fear—sometimes separately, sometimes all at once.  I can be feeling sadness immediately after a good experience or anger about being afraid.  Emotions run from subtle to extreme all in the same hour though most of the time, I just feel numb.  I’ve learned to compartmentalize my emotions; to separate them from what is currently happening so I can maintain control.
Cognitively-I can become forgetful.  Lynn tells me things and if it’s not “essential” information, I can’t remember any aspect of the conversation. It’s like I’ve had a black out.  Last week I was assembling his medication for the week and I lost one of his bottles of pills. I knew I had it just moments before but I searched everywhere I could think of to find it…unsuccessfully.  The next day I was sitting at the kitchen table and saw the bottle sitting on the “ice dispenser ledge” on my refrigerator door. That ice dispenser doesn’t even work!  I have no memory of putting it there or seeing it when I was looking for it–total loss of recall.
Continue reading this post at: http://multiplesclerosis.net/living-with-ms/handling-grief/
 

Is This It? I Thought It Would Be Bigger

For the past year, I have excitedly looked forward to this year’s beach vacation.  I have dreamed about how awesome it would be, talked about it with anyone who would listen, and looked forward to it like a child looking forward to a Christmas Eve visit from Santa. I was so excited because I thought I had found the perfect place for Lynn to go that would meet all his needs and allow the rest of the family to have a great time. This place sounded perfect.  It had an elevator, roll in shower, mobility assistance devices, wider doors, and a pool that slanted so he could roll into it on a floating wheelchair.  It sounded perfect…
Reality set in when we arrived. The first disappointment was that I misunderstood how high the elevator went in the house. I thought the elevator went to the top because it went to the second floor; however, this house has three floors.  I counted the first living area as the first floor and the entrance floor as the ground floor so when I asked if it went to the second floor, they said it did (and were correct) but I envisioned the third floor as the second floor instead. I was very disappointed because my parents and Lynn’s Mom have difficulty with steps.
Next issue: the elevator.  When we first arrived, I read the sign that said the elevator only held 500 pounds so between Lynn and the power chair no one could ride in the elevator to operate the controls.  He has very little hand strength so operating the elevator on his own would be difficult and frustrating.  I finally found the switch the next day to control the elevator from outside the cab so even though I was disappointed initially, it all worked out.
Then, we went to our room.  It was the smallest room in the entire house and I had more than twice the supplies and luggage needed for a week’s worth of living and caring for him.  Though it had a roll-in shower (a big plus), the actual space in the bathroom was very limited.  Then, when I tried to sit Lynn on the toilet, it was a disaster.  The toilet was sitting so close to the wall that the handrail placed on that wall to assist someone in getting up or down prevented him from being able to sit in the center of the seat.  His spastic arm was not able to be moved beyond the height of the rail and he was sitting in extreme discomfort besides not being safe.  I had to quickly get someone to hold him while I went to get the shower chair for him to sit on. However, the shower chair didn’t have a bucket so it could be used as a toilet chair so I had to improvise by using a lined trashcan–not a good experience.
The bed in the handicap accessible room was a queen size and took up most of the room.  That left very little room to maneuver his power chair so I had to move the bed against the wall to make more space.  The bed was high so it made transfers to and from more difficult.  While there was a TV in the room, it was small and difficult to see from a distance. The bathroom sink was just a sink and no vanity (though there was a good sized medicine chest there).   All and all, very disappointing and not handicap friendly….at least for his handicap.
And that’s my point… “his” handicap. This beach house is actually awesome. It’s big and spacious with lots of amenities, a wonderful pool, and lots of space on the second floor to move around.  I’m sure that if it was used by someone who did not need to share a room, who only used the over-head lift equipment to get in and out of the bed, whose toileting was not done on the actual toilet or who managed it without assistance, the challenges we had with the room would not be an issue.
I complain often that a “handicap accessible” label is a distinctive misrepresentation of most places.  Most of the time it just means handrails or bars attached to the wall in the bathroom.  I’ve never actually been to a place that was really equipped for someone totally mobility challenged.
continue reading at: http://multiplesclerosis.net/living-with-ms/thought-bigger/

Who Can Afford Respite Care?

Before I get started on this blog, I want to write a disclaimer:  I’m very tired and having difficulty this week coping so if you are a caregiver; read on—you probably have felt the same way.  If you are someone with MS, maybe you better skip this one.  It’s not meant to cause you guilt or pain but unfortunately, it’s how I’m feeling right now.

So what’s wrong with me today?  I’m tired.  My body aches.  And though it’s 8:30 at night when most people are starting to wind down, I still have many hours to go.  Nothing out of the ordinary going on today; it’s just a regular day, but that’s why I’m feeling down…Not depressed; just down.
Do you ever just feel like you want to run away?  I do.  I want so much to have a couple of days in a row where I only take care of myself.  I really feel like I need to get away but I also know that is not going to happen.  You may be thinking, if you’re a parent of a young child that you are also in the same situation, but unless you have a special needs child that is not likely to leave home, I’m going to challenge you on that view.  When your child is totally dependent on you, they are still small enough that you can lift them fairly easily.  Chances are they weigh less than 50 pounds. The person I’m caring for weighs 195 pounds, is six feet tall, and can’t move a muscle independently. While your child is taking up every spare minute of your day, you know they are going to gain independence, and as they grow and learn, they will become even more independent until eventually they will either leave home or if they stay at home, you can ignore them. You have the “empty nest” to look forward to.
I don’t.
Not trying to be morbid here but my responsibilities are only going to get more demanding; not less. As I grow older and have less strength and more discomfort, his needs will only be getting greater.  Our situation will not get better until one of us dies … and the fact is, I’m just as likely to be the one to go as he is since the life expectancy for a full time caregiver is less than the average population’s of the same age.  I sometimes feel that the only way I’m ever going to get any rest or really be able to rejuvenate is to become hospitalized myself.
I know I should not be complaining like this; I have people come over almost every day to help Lynn with his writing.  Most of them also feed him his breakfast, get him what he wants to drink and help him with small comforts.  However, in order to be able to use their services, I have to get up three hours before they arrive to get him ready for them.  Then once they leave, I have hours of work to do related to his care as well.  Each morning my alarm goes off and Lynn is telling me to get up; he needs to empty is bladder as soon as possible. So I can’t linger in bed and stretch or gradually to wake up anymore.  Then we spend a half hour to an hour in the bathroom where my tired, tight-feeling body lifts him onto and off of the toilet.  Finally, I lay him down to get him off his butt since he sits up to sleep. I want so much to not have to get up each morning; to not spend three hours lifting body parts that are heavy and dead weight; to not feel so exhausted I can hardly move.
But I can’t.
Continue reading at: http://multiplesclerosis.net/living-with-ms/can-afford-respite-care/

Would Hydrotherapy Be an Option?

We had the great fortune this year to rent a beach house for our summer vacation that included a handicap accessible pool. The pool was large enough for our entire family to be in it (seven of us) but small enough that by afternoon the water temperature was around bath-water range. While some people might consider that a disadvantage, for Lynn it was just what he needed. Cold water tends to make his spasticity worse. Plus, Lynn is like a cold-blooded animal—he takes on the temperature of his surroundings; therefore, naturally occurring warm water was perfect for him.
Each day, we took Lynn to the pool where he hung out with us for at least an hour. I would put his arms across a buggy-board or water noodle and use that as a floatation device. The float would be in front and I would hold on from behind. While I held him, he used the buoyancy of the water to help him exercise not only his legs but also his arms and torso. It was a complete body work-out which did not result in serious fatigue. It was fun and therapy at the same time. While he exercised, he was able to be part of the family activities and enjoy the time with his two-year old grandson (who would have grown gills if we had stayed there any longer, I’m sure.)
Now that we are home again, Lynn realizes even more the advantages of hydrotherapy. When he saw his chiropractor this week, she commented on how much more flexibility he had than usual. She attributed that to the passive resistance of exercising in the water. Helping him exercise in the water was also easier for me. Though I had to hold onto him and even hold him up at times, the water served as a support system for the weight of his body keeping me from being as fatigued and reducing the stress impact on my own muscles. With that realization, he has begun to explore the possibility of buying an exercise pool.
The prospect of buying and installing a pool has me filled with mixed emotions, however.
The pros

  • Helping Lynn to exercise in a pool would be easier on me that the muscle stress currently occurring as I help hold, lift and otherwise move his limbs. He has very little ability to move either of his legs and can only move independently one of his arms so the effort required by me is greater than the efforts he can make alone.
  • An indoor pool in one of our spare rooms would be much handier than traveling 45-60 minutes to use a handicap accessible, heated pool in a nearby city. It would also take a huge chunk of time out of my day. Not only would I have to be away from work for the period of time he was exercising but all the time required to go to and from the exercise location and time to get him dressed and undressed.
  • Once it was bought and paid for, we would not have monthly membership fees.
  • The exercise would certainly improve his health and well-being and most likely, my own. For me, it would also likely help my arthritis pain and muscle flexibility so it would help us both physically.

The cons

  • Exercising in a pool at home while less time than traveling to one, would add at least an hour to my schedule and maybe more when it already takes three hours to get him settled before I go to work each day now.
  • The cost of installation, house modifications, exercise and safety equipment, and a lift device to get him into and out of the pool without assistance would cost approximately $15,000-$20,000. Not bad for an indoor pool but a lot more money than what we have lying around.
  • I’m sure there would be some kind of maintenance requirements that would add work to my already full day.
  • What if we do all this, and he gets worse or I get to where I can’t put him into the pool? Then we would have spent a ton of money for something we cannot use.

Continue reading at: http://multiplesclerosis.net/living-with-ms/hydrotherapy-option/

Just Because It Can Be Done Doesn't Mean It Should Be

With much excitement but a little trepidation, Lynn and I returned to church last Sunday.  We had not been able to attend there since he started requiring the use of a wheelchair to get around.  When he first came home from the hospital in 2010, he was too weak for almost a year; then as his strength improved he started using Rebif and just felt too bad.  Finally, he switched to Tecfidera and was strong enough and felt well enough to return to church but then we measured the old elevator and realized he couldn’t get his wheelchair in it and then be able to make the 90o turn to get back out again. So we resigned ourselves to listening to the previous week’s sermon each Sunday morning as our worship participation.  Then our prayers were answered and after several years of planning and fundraising, the church has expanded the building and part of that expansion was a wonderful, large, smooth-running elevator!

Last week was the first week the county had given the church an occupancy permit so the elevator could be used.  We got word on Friday that all was good for us to return on Sunday.  I have to admit; we were nervous.  For one thing, we were not sure about where everything was or how to use it but figured we could work it out when we got there. Second, while Lynn has periodically gone to doctor’s appointments for extended periods, he has not been in a setting where he could not move around, adjust his wheelchair tilt to lie back, or be able to have other comfort measures performed for the period of time he would be in church.  We prepared by limiting his liquid intake that morning while increasing his protein and carrying a smoothie for him to drink as soon as service was over. That seemed to work; no unexpected bathroom trips during the sermon.
Another concern was clothing.  At home he wears layers due to his difficulty in regulating body temperature.  Also, his waistline is impacted by the baclofen pump implant so getting suit pants on was going to be a challenge.  Therefore, we had ordered dress pants designed for people who used wheelchairs.  The butt is “out” on the pants so that the back is a panel that wraps around and snaps into place. It worked perfectly. They were also light weight but heavy enough for when he felt cool.  A pull-over collar shirt completed the outfit.  Since our church members usually do not wear suites, he would fit right in.
Continue reading this post at http://multiplesclerosis.net/living-with-ms/just-can-done-doesnt-mean/

Lessons Learned From a Short Trip

I previously published an article (June 26, 2014) entitled, “A Short Trip Back Home.”  In that post I talked about the fact that going away for a weekend took just about the same amount of preparation and packing of equipment as going away for a week. Now, I want to talk about “lessons learned” from that short trip.

I have to say that this trip back home was one of the most miserable we have taken in quite a long time.  Maybe that’s due to the fact that we have not tried a short trip since Lynn became restricted to the use of a wheelchair but I think it just speaks to the complications of taking trips. Why was it so much worse?  There are two possible reasons I think for the difficulty of this trip–the first being that Lynn is being detoxed very slowly for heavy metals. The detox process makes him VERY tired on top of the MS fatigue that is a constant in his life. Needless to say, I couldn’t count on him to help in any way with the process and because he didn’t have the energy to lift a finger, literally, he was more needy than usual and was unable to recover from traveling with just a night’s rest. The second reason was that when we go on vacation, usually, my daughter and son-in-law come over to help me pack up the van. That means I can continue to work on meeting Lynn’s needs while my son-in-law packs everything I have assembled into the van. This time I packed and had Lynn to care for all by myself.
Lessons Learned
Lesson 1:  Take two days off to get ready for the weekend trip instead of one.
I took the day off before the trip to make sure I would have everything ready to go and could get started on time. It’s a five hour trip, I wanted to get at least six hours of sleep before I left, and I wanted to be there no later than 5 p.m. because I wanted my best friend from school to come over to visit for a short time.  I had not seen her in MANY years and we were going to be staying just a mile or two from her home—perfect opportunity to catch up with each other, or so I thought.
Since I had to take his food with me and since I was not going to be home to do my weekend cooking for the coming week, I had to do quite a bit of cooking the day before we left. All this cooking is why I should have taken the extra day.  Between cooking and doing laundry, I wasn’t able to do much packing the night before.
Since I didn’t get to bed before 3 and wanted (needed) at least six hours of sleep to be able to stay awake to drive, I didn’t get up till 9 the next day. Our morning routine takes 3 hours so that brings us to noon.  It’s a 4 hour drive if we have no stops along the way so we maybe we could still make it to the hotel by five???
Lesson 2:  Don’t try to do it all yourself.
I put Lynn to bed to rest before the trip while I started packing. While he’s been detoxing he’s been taking a 1-2 hour nap each morning. I put in an indwelling catheter for the nap and trip and proceeded to pack the van.
As I looked at the magnitude of equipment and supplies that I needed to take, I realized I needed to take out the bench seat in the back of the van.  I managed to remove the bolt securing it to the floor of the van but then I could not figure out how to unlatch the seat from the floor.  There’s some type of safety hook in there that I could not figure out and with my weak arthritic hands, I couldn’t get it to come loose so I had to give up and screw the bolt back into place (many tears and words left best unsaid were involved at this stage) and just pack around it.  By now it’s around 2 p.m. (plus 4 hours for an arrival time past 5…maybe I can reschedule my get-together?)
I get Lynn up after I finish putting all the bags and suitcases in the van. I take care of his comfort needs and then I’m ready to load him into the van. Part of the floor space needed for him to maneuver into his place in the van is taken up by a shower chair and cooler of food. It appeared at first that I would have to unpack them but at last, he shifted back and forth enough to roll into place.  Of course, then I had to crawl around and lock down the wheelchair and all the other items so that nothing would shift during transit and smash us into unconsciousness as we traveled.  I managed several moves that would have made a contortionist proud.  At 3:30, we were finally on our way.
 
continue reading at: http://multiplesclerosis.net/living-with-ms/lessons-learned-short-trip/

Can You Scratch My Leg?

After years of caregiving, I believe I know Lynn’s body and his emotional and physical needs as well or better than my own. Actually, I probably know it better because I don’t pay attention to my own.  By becoming that familiar with him, I’ve been able to take quick action to prevent minor problems from becoming major ones most of the time. However, by being so vigilante and adapt at making these assessments, it has resulted in a different problem—Lynn expects me to intuitively know what he needs!
For example, Lynn uses an air cushion seat.  The cushion is made up of multiple rows of air bladders that disperse air away from the weighted area (where he sits) to the outward bladders.  He then sits on a small layer of air which minimizes the pressure against his buttock.  The device is great because the firmness of the cushion can be adjusted as needed for comfort.  The bad news is that the material it is made from is like a bicycle tire and wears in time to produce tiny little holes which allow the air to leak out.  I then have to find the hole and patch it so he won’t be sitting on a flat cushion.  Periodically he will tell me to “check his cushion.” Unless there is truly a leak, it’s difficult for me to know from time to time if there is an actual difference in the inflated areas. He will say, “My butt hurts.”  I’ll respond, “Do you think the cushion needs adjusting?”  He responds, “Yes.”  I ask, “Do you think it needs more or less air?” His response, “I don’t know, just check it.” I then proceed to either add or remove air to make a change of some type.  It doesn’t help to ask if “that” fixed the problem because he can never tell. This can be rather frustrating as you can imagine because he wants me to fix a problem I can’t “feel” and to know if it’s “right” through my intuition.
If I look at this behavior as him being lazy and wanting me to take all responsibility for his comfort, then I get really annoyed, but if I remind myself that maybe the reason he can’t tell me if it’s right is because he has “butt de-sensitivity” then I’m a little more tolerant.  Maybe the reason he can’t tell me how it feels is because he’s been sitting on those nerve endings so long that he has lost sensitivity in that area. Think about it…if you sit in the same spot for an extended period of time and don’t move, can you even feel your skin touching the seat anymore? After a while it’s as if you and the seat are one and it’s difficult to know what is wrong if it’s gotten uncomfortable.  On the other hand, MS affects nerves; nerves transmit signals through the skin; could MS affect transmission of touch… sure, why not?
The other “touch” issue though is itching.  He no longer has the strength in his hands to scratch an itch.  He can slightly rub an itch but he can’t produce enough pressure to really dig in and scratch. He feels the itch, he calls for me to come scratch it and says something like, “My leg itches; scratch it.”  He seems to expect I’ll know which leg, where on the leg, how vigorous to scratch, and when I’ve stopped the itching. Now, in that situation, I think he just has come to expect that I’ll “know” what he needs.  I have to remind him that I can’t feel what he feels so he will need to stay “engaged” in the process.
 
Continue reaching at http://multiplesclerosis.net/living-with-ms/can-scratch-leg/

So, How Are You….Really?

When you run into someone when you’re out in public, what seems to be the first thing out of their mouth after saying your name?  For me, it’s, “How’s Lynn?” and then it’s, “and how are you doing?”  It’s never easy to know how to answer that question.

I believe that most people don’t really want to know details; they’re just asking to be polite and to communicate that your well-being is something that they care about.  Therefore, my typical response is, “we’re doing fine.” Then, there are those who know a little more about some of our challenges and want a little more information, so that group gets, “Doing well.  No new issues right now.”  That’s all they really want to know—is he worse or about the same? They know he’s probably not “better” because he has a chronic, long-term health condition that has totally disabled him so in their minds, “how good can it be, anyway?”
There are those who are interested in details—family members, close friends, and confidantes—those groups get more information, but it’s still filtered.  People in those groups want to know if there are any new problems and what is being done about them is there is.  They want him to get better and make progress.  They don’t like for him to feel bad or have to go through difficult times and they seem so disappointed if I tell them, again, that he feels “bad” or is exhausted and just has no energy.  So I just share the surface things and change the subject.
The fact is, Lynn is totally disabled.  That’s not likely to change. He feels lousy on some days and less lousy on others.  He’s tired every day but some days he’s just tired and other days he’s exhausted to the point that he couldn’t move his power-chair to get out of the way of a car speeding toward him. We attribute those good and bad days to a variety of factors but in reality, “who knows?”  It is what it is.
So then, how do I respond when someone asks me, “How are you? No, really, how are you?”  Usually I still just smile and say, “I’m doing okay; it’s hard but I manage.”  I don’t believe that they really want to know how my life really is.  It would sound too much like I’m whining because if I really told them like it is, it would go like this:
continue reading at: http://multiplesclerosis.net/blog/really/

A Short Trip Back Home

For the most part, Lynn and I are home bodies.  He just doesn’t handle traveling very well so we rarely leave home.  His already ever-present exhaustion is made significantly greater when he travels and it usually takes a full day to recover afterwards; therefore, we rarely do any short trips since he spends the time at our destination recovering.  Because of this fact and the fact that their home is not wheelchair accessible, I have not made the five-hour trip “home” to my parent’s house since around 2008.

I grew up in one of those rural areas where everyone knew everyone else and more than half of the neighbors were related in some way.  My cousins and I used to all get together annually for a family reunion; however, since Lynn developed MS, we haven’t attended.  I’ve really missed seeing them all and figured I would never see them again due to our travel issues, but my parents and brothers have come up with a plan for us to get together in a few weeks.  I’m really looking forward to seeing all my relatives but planning a short trip is as challenging as planning for a long one so I also dread it in many ways; especially since Lynn will not have a recovery day before he has to attend the reunion events.
In planning for this trip, my first order of business was to find a hotel nearby that was wheelchair accessible. That’s not as easy as it sounds. Many pronounce themselves to be handicap accessible but when you start asking questions, all “accessible” actually means is that they have handrails to use in the bathroom.  That is totally useless for my purposes because he couldn’t reach them anyway and he can’t transfer himself to the toilet so they serve no purpose.  Instead, my “search” criterion was for a roll-in shower.  I figured if a room included a roll-in shower, then the room planner might have a clue as to what was needed for someone confined to a wheelchair.
The first place I booked had the shower but the room had two double beds in it and the picture of the rooms looked really crowed.  Too much furniture in a room makes it nearly impossible for him to turn his wheelchair around so I began to look for something else.  The one I booked yesterday has a single king-size bed, a roll-in shower, a small refrigerator and a microwave in the room, and wide doors.  Mentioning the 32” doorway is a plus since that’s an indication they know what they’re talking about. I’m still a bit concerned because there was no actual picture of a handicap accessible room so I still wonder how much space there might be for him to turn around in.  I guess, if necessary, I can have maintenance move out furniture if I need more room for the wheelchair.
To continue reading this blog, click here: http://multiplesclerosis.net/living-with-ms/short-trip-back-home/

What's a Ratchet?

When I took on being a full time caregiver, I knew I was taking on full responsibility for skin care, elimination, nutrition, hygiene, assistance with activities of daily living and even physical therapy.  What I hadn’t counted on was taking on my husband’s role of maintenance mechanic for our home. Having a medical background, I’m comfortable with the caregiver duties; not so much with the mechanic ones.  In fact, they intimidate me to the point of panic when Lynn says something like he did last night, “Go get a ratchet.”

His electronic peddler (that he had been using almost non-stop for spasticity release for the past three years) recently bit the dust.  We had taped it up with duct tape, oiled all visible parts, and my solution, jiggled it unmercifully, with no success.  Resuscitation attempts of the old one was “called” and we had to pull out our backup peddler.  Unfortunately, when we turned on the backup, this terrible grinding noise could be heard with every rotation.  Since the grinding seemed to be coming from the motor, Lynn’s recommendation was to order a new one and return the noisy one when it came in.  So I did.  Well, the new one isn’t noisy but it has a hitch in its giddy-up.  Every rotation now is accompanied with a shimmy jump that can be felt in the base of Lynn’s foot and all the way up the leg. Upon watching the action for a period of time, he made the pronouncement, “I don’t think the arm is tight enough.  You need to tighten up the bolt. Go get the ratchet.”
Hearing the, “Go get…” was like a Pavlovian response for me.  My skin became clammy; I developed tunnel vision; and the muscles in my head and neck tightened.  It happened to be raining yesterday so my arthritic hands were already screaming with every use. “Wait a minute.  I can’t tighten anything today,” I responded. “My hands hurt, too, much.”
“It will be okay. The ratchet will do all the work.”
To myself, I’m mumbling, sure, that’s what you always say but outwardly, I’m saying, “okay, I’ll give it a try.”  So, off I go in search of a ratchet.
Lynn has not been in the garage in at least five years.  During that time, many of his friends, our kids, and I have gone into the garage to use his tools.  He remembers the tools being right where he last saw them. That’s not exactly true anymore so the first thing I have to do is search for and locate this item that I don’t know what is.  He describes it as a long silver tool with a thing like a bolt sticking out the side at the end of it.  I start looking under things, opening all the drawers in the tool box, moving things around and piling them into new heaps (that will again cause confusion in the future because they have again been moved), until finally, I find three silver things that match the description.  “Is this it?” I ask my mentor.
“Yes,” he responds, “but you also need the sockets.”
“Okay, what are those and why didn’t you mention that before?”
“Those are small silver round things that you put on the bolt and which inserts into the racket.  There is a metal strip out there that has what you need on it.”
He doesn’t answer my question on why he didn’t tell me this the first time and I proceed to look for sockets.  I find a metal strip with silver things that match his description.  At least half of the slots are empty so I look through drawers again finding similar items and again return to Lynn.
“Where’s all the sockets that belong on the strip?”
“Who knows?  I told you things have been moved around. This is all I can find. Okay.  What now?”
Lynn proceeds to tell me how to remove the protective cap covering the bolt on the arm of the peddler. Then we go through how to select the correct size.  I try to figure out how to attach the socket to the racket finally being successful after multiple attempts to push it into place. I put it on the bolt wrong, feeling totally inferior as a mechanic.  It doesn’t work so I try it the other way and it works!  After multiple, painful, tightening attempts, the arm of the peddler seems tighter and the squeak that was accompanying the giddy-up hop goes away. Triumph!
Finish reading this post at: http://multiplesclerosis.net/living-with-ms/whats-ratchet/

Sometimes I Get Jealous

Sometimes I am jealous of Lynn.  Isn’t that sick? How could any able-bodied individual who is healthy, independent, productive, able to work and function normally be jealous of someone who is totally dependent on someone else for EVERYTHING in his life other than his own thoughts.  I must be mentally ill – but there it is, sometimes I get jealous. Just how sick is that?  It’s certainly not something I’m proud of but I decided to share this secret, unattractive side of caregiving with you because I expect other caregivers have had that same emotion.

Let me be absolutely clear before I go any further….I do not envy him. I do not think he has the good life and would want to trade places with him for anything.  I know he hates being dependent on me.  I know it hurts him emotionally to see me tired or in pain or physically ill but still needing to do for him.  I know he had much rather be going to work every day, feeding himself, taking his own bath, and scratching his own itches.  I know he only asks of me what he cannot do for himself and no more.  My jealousy is not about his abilities or lack thereof; it’s about my own need to be cared for.  That’s why I get jealous. I want someone to take care of me for a change; no not just that, I want to be able to put myself first when I’m sick or tired rather than having to ignore how I feel and keep pushing forward.  Here’s the base truth—I want to be selfish for a change.
Like being a parent, when I became a full time caregiver, I committed to that role totally.  I ALWAYS put Lynn’s needs ahead of mine except when to do so might cause more harm than good. For example, if he needs to be moved and I haven’t had a chance to eat anything in hours and my blood sugar is crashing, then I may leave him where he is, even if he’s a little uncomfortable, till I can go grab a bite of something to keep me from passing out—not a whole meal, just a snack. However, if he’s really needy one day because he is feeling pretty rotten or achy, chances are I’ll put off eating, going to the bathroom, or completing home/work chores until I can get him at least half-way comfortable.  I sympathize with his inability to comfort himself and I show that concern and acknowledge that need by tending to him first.  He in turn tries not to ask for anything he absolutely does not need – though sometimes in my jealous state, I question if he REALLY needs to have a particular action done…again….and again.
Truthfully, the jealousy comes when I’m tired or sick or both. When I have had four ½ hours of sleep the night before and I’m on hour 14 since getting up with much still left to be done… when all I want to do is lie down and go to sleep, I become very jealous of the fact that I will make him comfortable and he will immediately fall asleep and nap while I head to the kitchen to prepare meals for the next day or to eat my own dinner or to put in a load of clothes or take a shower or whatever and it will be yet another 2-3 hours before I get to lie down.
I become jealous when I am in pain from my arthritis (which is significant at times). Both hands are painful; I have little strength in them any more with swollen knuckles, nodules on the bones, and joints that must not have any lubrication left.  I cannot take the usual medications that help reduce the effects of arthritis due to being allergic to shellfish and many of the other ingredients in those remedies so I take four Advil usually twice a day to help control it. However, when my hands hurt from the effects of air moving across them yet I still need to pull of his clothes, give him a shower, and then put clothes back on him; I just wish someone else could do it for me.
I sometimes fantasize that I’ll get injured and can’t do his care for a while and I’ll have an excuse to take care of myself.  But in the next thought, I remind myself that there would be pain and it would not be a vacation.  I guess what I need is respite care.  However, that’s easier said than done. Respite care is not paid by insurance so if I obtained it, the money would have to come from somewhere.  If I saved enough for respite, then I couldn’t afford to go away and if I didn’t go away, I would be home and he would need my help so that’s not much of a realistic option.
To finish reading this post, click here: http://multiplesclerosis.net/living-with-ms/sometimes-get-jealous/

One Minute He's Hot; the Next He's Cold

The thermostat in my house is currently registering at 77o ferneiheit.  With all the activity I’ve been involved in today, I’m now sitting here melting at my computer. Meanwhile Lynn alternates between being hot and cold but mainly stays cold.

Before the days of MS, Lynn’s body temperature ran hot. It could be the middle of winter and he would be outside in shorts and a T-shirt cooking on the grill.  We used to joke that one day he would spontaneously combust into flames because he just radiated heat.   That changed shortly after his diagnosis.  He gradually became less tolerant of heat.  Instead of setting the temperature indoors to a chilly 70, he would be satisfied to allow me to set it at a more comfortable level where it was no longer necessary for me to bundle in a blanket and wear gloves to watch TV.  Then he went from being warm to the touch to being cold.
Lynn developed a urinary tract infection that was mistreated for a couple of months resulting in his becoming very ill.  His body was not able to fight off the infection and he became weaker and weaker.  As his health declined, he became cold. At times it was necessary for me to wrap him in blankets, put fleece lined footwear on him, cover his hands in gloves, and heat up sandbags to lie over his hands and against his body.  He was freezing all the time.
Eventually, he had to be admitted to the hospital and while there, he aspirated and developed pneumonia.  It wasn’t caught at first, because he had no fever.  He was very lethargic; sleeping all the time. His blood pressure was low as was his pulse, and his body temperature simply did not register.  For almost two days the staff just attributed the temperature difficulties to equipment.  Finally, one of the care partners got a rectal thermometer because she felt something just was not right.  Rectally, his body temperature should have been a degree higher than orally; however, his body temperature still did not register.   When they finally were able to get a reading, his body temperature was 90rectally!  He was immediately put into the ICU and a heat blanket used for hours to gradually bring his body temperature back to normal.
To continue reading, click here: http://multiplesclerosis.net/living-with-ms/one-minute-hes-hot-next-hes-cold/

The Challenges of Separation Anxiety

I experienced separation anxiety as a child.  I didn’t like to leave home; rarely went to sleep-overs; and seriously considered my college choices based on how close they were to home so I “get” that feeling of longing to be close to someone you love and the slight edge of fear that comes when you are separated from them.  I learned more about the “other side” of separation anxiety when my children were little and I had to peel them off my body to leave them at day care so I could make it to work on time (which I rarely did because I had an aversion of losing skin during the peeling process). Now that my children are grown, I’ve learned to adapt to it again with my husband. It’s a little more difficult this time around.

When Lynn and I were first married, we were both self-sufficient, totally independent personalities. Both of us had managed alone as single parents for a while and both were used to doing our own problem solving so we didn’t “need” one another.  Sure we yelled the usual, “be careful,” comments as either was leaving the house but our thoughts quickly moved on to the next item on our agenda; there was no lingering anxiety over whether the other would return safely a few hours later. That all changed the day Lynn fell and was not able to get up on his own.  He had to lie in the blowing heat from the heat register waiting for me to return home from an hour and a half away after he had tried unsuccessfully to get up without calling me for an hour and a half himself. That three hour time frame shaped his psyche forever.  Where before he liked being alone and independent; after that day, he didn’t want me out of his sight or hearing.

After that day, if I needed something from the store, he tried to either convince me that we really didn’t need it or that it would be simpler to just order it by mail. I could see the fear in his eyes if I left the house and the, “be careful,” mantra took on new meaning for him.  He was afraid that if I left, I might never come back and if that happened, what would happen to him?  He was and is convinced that if I die or become unable to care for him that he will die, too. He knows that as much as our children or our siblings and parents might want to help us out, if I’m not around or able to provide his care, he will most likely have to go into an extended care facility and we do not have the resources for it to be a really nice one.  Therefore, he knows many of his personal needs and quirks (which are many) would go unsatisfied.  He knows that he would probably not get his special diet or his dietary supplements that are making such a difference in his well being.  He knows that he would not likely get the physical therapy adapted specifically to his needs.  He would more likely get a urinary track or kidney infection because the care facility would likely put in an indwelling urinary catheter.  He would not be able to use his peddler that keeps his legs and feet from hurting all the time.  He would not have access to his own personal computer to continue to write and feel productive.  He would become part of a group, exposed more often to viral and/or bacterial infections and probable skin breakdown.  He would likely not get showers but would instead get bed baths and his very existence would likely be compromised.  At the very minimum, his quality of life would decline significantly. Therefore, he panics when he thinks of losing me. Don’t get me wrong; he also loves me and would grieve my loss emotionally, but it’s all this other stuff that creates the panic.  He could survive the emotional loss but would not as likely be able to survive the physical changes.

Now, when I leave, we go through the twenty-questions of: Where are you going?  How long will you be gone?  Why is it necessary? Can’t someone else go instead? When will you be back? Have you checked the oil in the car? Is the car running okay? When will you be back?  Where is my phone? Is it charged? Can I reach it? When will you be back? …and on and on and on.

When the separation anxiety for became an issue, after I would peel him off my body emotionally and leave, the first thirty minutes would usually okay, but then I would get a text message…Did you make it okay?  When are you leaving?  Can you hurry up? Just checking to make sure you’re okay…..

To continue reading this post, click here: http://multiplesclerosis.net/living-with-ms/separation-anxiety/