Donna Steigleder

The Challenges of Separation Anxiety

Donna Steigleder / May 7, 2014

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/

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The Impact of Caregiving on the Caregiver

Donna Steigleder / April 29, 2014

s I was taking my morning dose of Advil (4 tablets rather than 2), I was curious about my future as a caregiver and what being a caregiver was doing to me personally. So I thought I would look up to see if any research had been done on that topic. The Family Caregiver Alliance had a nice comprehensive summary of what research says on their website. I caution you though, that if you are the receiver of care, this might make you feel guilty and if you are the caregiver, it might make you feel depressed. That is not my intent. I think these facts are important to realize; however, so that appropriate decisions can be made for everyone’s future.

Mental and Emotional Health Impact of Caregiving

Caregivers have higher levels of depression (40-70% have signs of clinical depression).
They often have coexisting anxiety disorders, substance abuse or dependence, or chronic health disease along with depression.
Caregivers have higher stress levels experiencing symptoms of frustration, anger, feeling drained, guilty or helpless.
They report feeling a loss of self identity, lower levels of self esteem, constant worry; feelings of uncertainty, less self-acceptance and feel less effective and in control of their own lives.
More than one-fifth (22%) are exhausted when they go to bed at night and feel they cannot handle all their caregiving responsibilities.
Caregivers who experience chronic stress may be at greater risk for cognitive decline including short-term memory, attention and verbal IQ.

Studies indicate that stressful caregiving situations may result in the caregiver participating more often in the use of alcohol or other substance abuse and caregivers often use prescription and psychotropic drugs more often than non-caregivers. In addition, family caregivers are at greater risk for showing higher levels of hostility. Over time as clinical depression increases and the person they are caring for shows greater impairment in mental and physical dependency, the caregiver is more likely to engage in harmful behavior toward their loved one if they themselves have become depress. Depressed caregivers also show a greater incident of suicide.

Caregiving Impact on Physical Health

Eleven percent (11%) of caregivers say their own health has declined since taking on caregiving responsibilities.
Caregivers have a lower level of subjective well-being and physical health. In 2005, three-fifths (45%) of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared to one-third (24%) of non-caregivers.
Caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching), increased tendency to develop a serious illness, and have high levels of obesity and bodily pain.
Studies show that caregivers have a diminished immune response leading to frequent infection and increased risk of cancer (caregivers have a 23% higher level of stress hormones and 15% lower level of antibody response). They also suffer from slower wound healing.
Ten percent report they are physically strained.
Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk for the development of cardiovascular syndromes such as high blood pressure and heart disease. They also are at greater risk for diabetes and higher levels of cholesterol.
Women who spend 9 or more hours per week caring for a disabled spouse increase their risk of health disease two-fold.

to continue reading this blog, go to http://multiplesclerosis.net/living-with-ms/impact-of-caregiving/

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Finding Time for Normal

Donna Steigleder / April 23, 2014

I usually write my blogs on Saturdays because it’s the only time I don’t immediately have another obligation once I’m freed up from routine caregiving. Today is beautiful outside-the sun is shining, the air is warm, no clouds on the horizon. I see a few bees buzzing around and there are daffodils peeking out of the stems that survived the late season snows we had this year. As I look around, I yearn to go outside and create hanging baskets of bright colored flowers and set out other flowers bordering my house but as I think of indulging myself in those activities, I look at the clock on my computer…it’s already 1:11 p.m. Lynn will be up from his nap soon and need to eat. I have clothes washing that will soon need to go into the dryer. I have “x” number of reports to write for work, this blog to get out today, and I need to put away several boxes of supplies that arrived this week before my grandson visits in the morning. I also wonder if I’ll have time to get to the library before it closes at 2 and I have a DVD to drop off (that is already on day five of late rentals). Oh well, maybe another day I’ll be able to get outside.

Unfortunately, that’s how must days go for me. I find it almost impossible to participate in the non-essential but normal routines of life. If it were not for the kindness of one of our friends, our yard would likely only get mowed once a summer when it absolutely had to be mowed in order for us to find the driveway. I don’t actually plant flowers anymore because live plants require watering, feeding, and other care. I don’t have time for that so I sit out artificial ones. Artificial plants may be tacky by some people’s standards, but for me, it makes the place look cheery so I don’t really care if it’s tacky.

Another normal I don’t have time for is cleaning the house. I wipe down space based on where I am when I have a fairly clean damp cloth. I don’t vacuum or dust and spring cleaning…forget about it! Fortunately, I have found someone who will clean my home for a price I can currently afford and she comes every other week. However, what she doesn’t touch; doesn’t get cleaned. I just don’t have time to deal with what is not essential so I clean to prevent food poisoning; not to make my home look good.

Click here to read more of this blog: http://multiplesclerosis.net/living-with-ms/finding-time-normal/

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Second-Hand MS

Donna Steigleder / April 13, 2014

Before Lynn was diagnosed with MS, my experience with the condition was from a distance. I knew of a third cousin with it that family members talked about in sympathetic tones of doom. I had a few encounters with colleagues who had MS and who shared some of their struggles with me when they asked for my assistance in obtaining a reasonable accommodation (I work in Human Resources) so they could perform their jobs successfully. I remembered some information from my nursing training twenty-five years previously but it was mixed in there with the rest of the chapter on neurological conditions so I wasn’t sure if I was remembering symptoms of MS, Muscular Dystrophy, Myasthenia Gravis, or something else. I knew enough to know that I needed to learn more.
Our first appointment with the neurologist was a little over-whelming. We came home with a bag full of literature to pour through to decide which medication he might want to try, the option to participate in a study, and several pamphlets that basically were along the lines of, “so now you have MS…” Lynn didn’t want to have anything to do with any of it. He gave it to me; said, “tell me what you think,” and turned his back on the entire thing. At that point, I believe he was too depressed to let anything in. He wanted to be in denial and would not even let us say aloud that he had MS. His philosophy was, “If you say you have it, you give it power over you and I’m not going to do that.” While I could understand where he was coming from, on the other hand, MY philosophy was, “knowledge is power,” so we immediately separated into our two corners to deal with the situation.
…So began my journey of having “second-hand” MS.
Continue reading at http://multiplesclerosis.net/living-with-ms/second-hand-ms/

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I Like Ours Better

Donna Steigleder / April 6, 2014

There’s always a lot of hype that surrounds holidays, and Valentine’s Day is certainly right there keeping pace with all the rest. It’s supposed to be a day to celebrate your love for one another in some special way with gifts, dinner out, and other more intimate ways of expression. I’ve never been overly romantic; though Lynn was. He used to always send me flowers where I worked or made me some type of special decorative object. He always did something special because he enjoyed showing his expressions of love in his own way.
Now that he is unable to get out on his own, he isn’t able to do those things anymore. He can’t make anything since his hands don’t work and he can’t order anything to surprise me since I manage the household funds and would have to type in the credit card information. He can’t take me to dinner because he tries to stick to his special diet and by night time he’s pretty wiped out anyway (plus this time of year we avoid crowds anyway due to cold and flu germs).…he can’t show other more intimate expressions of love independently—other than a kiss. He can’t put his arms around me or hold me or cuddle with me unless I position him like a manikin and honestly, with my arthritis pain and muscle spasms, that’s just not something I want to do for a few minutes of physical closeness.
You would think that this loss of physical intimacy might have adversely affected our relationship, but I honestly think just the opposite is true. Before Lynn became so dependent on me, we both were VERY independent souls. Both had previous marriages that did not succeed and both had learned to be both a mother and a father, a housekeeper and a maintenance worker, a CEO and a front-line worker. Learning to share and include one another was not always our first instinct and that oversight often caused conflict. We may have had physical intimacy but we didn’t have as much emotional intimacy.
While it may sound strange to say this, Lynn’s loss of mobility has lead to our relationship actually becoming much closer than we ever were when we could go out and participate in things together. Now we have to share everything. If he has an itch, I have to scratch it. If he needs a bath, I have to give it. If he has a problem…he now tells me about it. There is a strong connection that bonds us like nothing we had before. No longer am I shut out of his life; we truly are one.

Read more of this blog at: http://multiplesclerosis.net/living-with-ms/like-better/

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Buying Health

Donna Steigleder / March 28, 2014

There’s a lot of talk these days about health care reform and making sure the uninsured have coverage. I don’t want to debate the strengths and weaknesses of the law but I do want to comment about the struggles associated with having a chronic health condition and how much is not considered when adding up the cost.
Fortunately, most of Lynn’s prescription costs are covered. If we didn’t have insurance, our cost would be over $5,000 per month for just his MS drug. In addition to his MS medication, he takes meds for other conditions like high blood pressure, mitral value prolapse, neurogenic bladder, MS depression, hypothyroidism, and others. Just the cost of meds alone would send us into bankruptcy or more likely, we just couldn’t afford for him to take anything if we didn’t have insurance coverage. Total cost for his meds last year (insurance + copay) was $58,000!
Besides medication, his dietician has him on numerous dietary supplements to support neurological cell regeneration and to assist with energy and autoimmune responses. We spent $6,500 for those last year. That does not include the fact that most of what I buy for him now is organic or meats that have been grass fed. Don’t know if you’ve checked out the price of organic food lately but it’s not cheap. Grass fed meats and pastured poultry is also much more expensive than buying the store brand. We have discovered that his body does not eliminate harmful chemicals ingested or absorbed and that he’s been storing them up for years. We are working now to get rid of all those toxins so the last thing I want to do is put more in there from fertilizers, hormones, or other chemicals used to buff up the animals or prolong storage and/or appearance.
Totaling our cost continues: food and medications–covered; now for supplies.
Each month, I order medical supplies (self-catheters, in-dwelling catheters, gloves, lubricants, catheter insertion kits for travel, etc., skin care and barriers, lotions and ointments for various needs, and miscellaneous other supplies particular to his care. I have shelves in an unused room full of such daily used supplies as well as other “in case of” supplies.
All of the above are the routine costs of daily living, but there are other more costly purchases which fortunately do not occur every day but when they do happen, they really take a toll on the purse strings. For example, at various times we have purchased a cane, rollator, manual wheelchair, bedside commode, shower chair, and power wheelchair. We were fortunate beyond words to have our church donate the cost of putting in a ramp so Lynn could get into and out of our house and a roll-in shower to make it easier to bath him. Our house is a rancher so we have not had to decide between moving, putting in an elevator, or redoing a lower level to make accessibility available inside the house. Others, I know, have not been as fortunate.
To read the rest of this post, click here: http://multiplesclerosis.net/living-with-ms/buying-health/

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My Role as a Physical Therapist

Donna Steigleder / March 11, 2014

Personally, I have never been good at exercising. I hate it. I might feel much better if I stayed with it a while but I’m so out of shape that I feel awful doing it. Not so, for Lynn. He has always been good about doing some type of exercise almost every day. The major difference now is that I have to help him with it. Therefore, one of my many roles in caring for Lynn is to be his personal physical therapist.
For anyone, but especially people who have conditions that produce fatigue, keeping conditioned is essential to conserving energy. If the muscles don’t work efficiently, it takes a lot more energy to do the simple tasks of everyday life. Lack of stimulation to the muscle groups causes them to become de-conditioned which require more oxygen and other support from the body to make them work correctly. When Lynn was in the hospital so much in 2010, he was told that for every day of inactivity (i.e., being confined to bed) he experienced, it would take approximately a week to regain what was lost due to deconditioning. He found that to be true to a large extent. It has taken him years to build back up much of the strength he lost during those three hospitalizations and some of it has never returned to the same level.
There is not a whole lot you can do to prevent the progression of MS; however, if you keep fit you’re more likely to be able to maintain greater strength and endurance than if you are out of shape. Lynn does not want to give up and let me do everything for him. He wants some control over his condition so exercising is both a mental triumph as well as a physical one. Here’s some of what he does.

Read the complete blog here: http://multiplesclerosis.net/living-with-ms/my-role-as-physical-therapist/

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The Need to Feel Productive

Donna Steigleder / March 3, 2014

One of the struggles we have had to address with Lynn’s MS progressing so rapidly at one point was the loss of his feeling useful. Lynn was very strong, flexible, and talented all of his young adult life. Then over the course of three years it seems he went from having the ability to build his own home (drafting the plans, laying the foundation for a full basement, toting, lifting, hammering, shifting, etc.) to not being able to have the strength to push a button on a keypad. He was the supervisor of a fabrication shop that designed and built displays that were the size of small houses. He was a very talented carpenter but he could do just about anything related to construction and was even good at auto repair.
Unfortunately, just as his MS was progressing to the point that his work was being affected, his company closed the fabrication shop. He was still in the state of mind that he was not going to acknowledge he had MS and needed help so he did not apply for disability; therefore, he lost access to that financial assistance. He was convinced that if he didn’t own “it (MS)” then “it” had no control over him. Though I tried to explain that he could and should fight to keep all of his functions intact and working well, he did not want to accept that disability insurance and other resources were there to help in that fight; not to prevent him from doing what he could on his own….but my husband is very stubborn. Enough said on that.
While Lynn struggled to continue to “work,” being a carpenter doing physical labor is not safe when you lose your balance and fall often. Also if hands and fingers don’t grip well, then use of power tools is dangerous. He realized after a couple of close calls, he needed a new line of work. His son suggested he start writing because he seemed to have a talent for it and enjoyed using his imagination. He started with short stories but soon had an idea for a novel. He found that he loved to write and it became his new job. He had his first novel published (Rising Tide) in 2009 just before his physical spiral downhill resulting in months of hospitalization.
After his third hospital discharge in six months, he was very weak; however, he continued to want to write. He NEEDED to write because he NEEDED to feel productive. As a man, Lynn had to feel needed and productive to feel he mattered. Actually, don’t all of us feel that way to some extent? No one wants to feel like a burden. People have a need to contribute and when they can’t, depression sets in and health starts to deteriorate. Therefore, I realized that part of my role as Lynn’s caregiver would be to help him work and be productive. I needed to find a way that he could write daily that would still allow me to work. It’s often a challenge and can be very frustrating for both of us.
continue reading on: http://multiplesclerosis.net/living-with-ms/the-need-to-feel-productive/

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"You've Got This" Campaign

Donna Steigleder / March 2, 2014

Healthline just launched a video campaign for MS called “You’ve Got This” where individuals living with MS can record a short video to give hope and inspiration to those recently diagnosed with MS.
You can visit the homepage and check out videos from the campaign here:http://www.healthline.com/health/multiple-sclerosis/youve-got-this
Healthline will be donating $10 for every submitted campaign to the National MS Society, so the more exposure the campaign gets the more the videos they’ll receive and the more Healthline can donate to MS research, support groups, treatment programs, and more.
If you know anyone that would be interested in submitting a video, please encourage them to do so.

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Is There Really Anything to Being On An MS Diet? We Think so

Donna Steigleder / February 20, 2014

Early in discovering how to cope with MS symptoms, the nurse who works in Lynn’s neurologist’s office suggested that he might want to see a registered dietician. Lynn was feeling pretty rough all the time. He had no energy and more than that, he just felt bad. She shared that her husband had been seeing someone who had really made a difference in how he was now feeling. Though her husband did not have MS, she strongly suggested we give it a try; so we did! Two years later, I must say, it’s the best decision we ever made. In fact, Lynn was just saying today that if he had to give up all his doctors/therapist but one, the one he would keep is his nutritionist!

The first step we took when seeing the nutritionist was to keep track of EVERYTHING he ate for a week. This allowed her to see what his eating habits were –what might be good and what might need to change. The first thing she told us that had to change immediately was that he needed to stop eating dairy and become gluten free. Both dairy products and gluten create more inflammation in the body. Her goal was to reduce or eliminate as many foods as possible that would trigger an inflammatory response. The next goal was to increase ingredients into the diet that would support the neurological system. She had attended a conference where the research of Terry Wahl was presented. Dr. Wahl had secondary progressive multiple sclerosis and went from being wheelchair bound and unable to do much of anything to using only a cane, riding horses and returning full time to work. Hearing that; we were hooked on trying it.
Click here to read more: http://multiplesclerosis.net/living-with-ms/is-there-really-anything-to-being-on-an-ms-diet/

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Arsenic, Mercury, and Lead – What do They Have to Do with MS?

Donna Steigleder / February 12, 2014

If it’s one thing I have learned in caring for my spouse, it’s that in order to keep him healthy and functioning at his optimum level, I have to take a holistic approach to his care. Taking MS drugs to prevent exacerbations helps prevent significant loss of function; however, if his body is not in the best shape possible to fight attacks from viruses or bacteria or if he’s injured or allows his body to become de-conditioned, those issues are just as significant to his well-being as the medication he takes. Therefore, Lynn’s wellness regime includes a diet that targets mitochondrion function (repair of nerve cells); he exercises every day focusing on different muscle groups; and he rests when he gets tired. At his last neurologist visit, his functioning was better than the visit before and as it had been the visit before that. In fact, the neurologist stated, “You’re surprisingly better and it’s not due to what I’m doing for you. Keep up the good work.” It seems that he’s doing all the right stuff so why is it that he continues to feel so bad?
Lynn has been taking Rebif for almost two years now. If you’ve taken Rebif or know anyone who has, it has the ability to make you feel like you have the flu; however usually that gets much better as your body adjusts to it. That hasn’t happened for Lynn. In addition, as a side-effect of Rebif, his thyroid stimulating hormone levels became high indicating that his thyroid was not working properly. Hypothyroidism makes you feel cold, extremely fatigued, and generally miserable. So hypothyroidism was blamed for why he felt bad; but then the thyroid levels began to get back to near normal but his fatigue and general malaise seemed worse. Was this just another MS issue he would have to live with? Maybe not….
The best healthcare provider he has had by far to date is not his neurologist but his dietician. She’s amazing. We were having one of our regular consultations with her and describing how bad he felt and she quickly became suspicious that something else might be going on. She asked his primary care doctor to do a urine test for heavy metals. She requested a six hour provoked test which required him to take some pills that stimulated the release of heavy metals that might be stored in his cells into his bloodstream and later excreted into his urine. This test would show potentially if he had stored heavy metals in his system that might be affecting his health. We were shocked at the results!
To continue reading, click here: http://multiplesclerosis.net/living-with-ms/arsenic-mercury-and-lead-what-do-they-have-to-do-with-ms/

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Batten Down the Hatches! Snow is Coming

Donna Steigleder / February 7, 2014

For you folks who have lived in the northern states, the reaction of us mid-Atlantic residents to the threat of snow must look like a bunch of panicked rats in a maze. The reason for this panic is that most people are spoiled by the ability to run to their neighborhood (insert store here) to pick up whatever they want whenever they want it. The knowledge that they might not be able to buy bread (or beer) for a couple of days seems to strike fear in the heart of grown men.

When I hear we might have snow or ice, my first thought is to get the generator ready. I live in a rural area that is not in the “priority” grid even though Lynn at one time had to use an electric external ventilator type device when he would try to sleep. At that time, we were told to fill out special forms to make sure the electric company was aware of his medical need to have access to power to run necessary medical equipment. We filled out the information and I assume it’s still on file somewhere but realistically, it didn’t seem to make any difference. With more and more people who have special needs living at home, I expect every grid has someone with a special needs form on file with the electric company so it goes back to the number of residents per grid and where they (the electric company) gets the biggest bang for their buck.
Ready the complete post at http://multiplesclerosis.net/living-with-ms/snow-is-coming/

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Living the Loss

Donna Steigleder / February 1, 2014

I attended a memorial service recently at my church. It was the first time I had attended a church “service” there in three years. The last time I was there, I was rehearsing for our Christmas drama and had one of the lead roles. We were in the final weeks before the production and I had to drop out because Lynn was admitted to the hospital. He was in ICU for a month and then readmitted two more times during the next six months. Once he entered the hospital, his strength and functionality were significantly compromised due to inactivity and the complications of his condition so initially we could not return to church due to his health. About a year later, he was strong enough to return but we discovered his power chair was too big to fit the elevator so he couldn’t go unless he used a manual wheelchair. He isn’t strong enough to sit upright that long without the support of his power chair so we are currently waiting for renovations underway at church that will include a new elevator and handicap bathroom so we can come back. Church members even lovingly call it “Lynn’s elevator.”

Prior to his MS progressing to this stage, Lynn sang in the choir, played hand bells, played drums for the praise band, provided some carpenter assistance in addition to attending services and Sunday school every week. I sang in the choir, played hand bells, lead a drama team, worked with a support group, and helped in the nursery while also attending services and Sunday school every week. We were both very involved and much of our social interaction and support came from people at church. Not being able to attend church left a big hole in our lives. Many still send cards and they have supported us in so many ways, both financially and in service; that our lives continue to be touched and blessed by their generosity and compassion. However, the type of fellowship we used to have is missing in our lives.

continued at: http://multiplesclerosis.net/living-with-ms/living-the-loss/

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I'm the Primary Healthcare Provider

Donna Steigleder / January 29, 2014

Lynn has never been good at sharing information. He’s one of those men who can go to the doctor about a problem, find out he has a new medical condition, start a new treatment program, and when he comes home will say, “The doctor says I’m fine,” or say nothing at all. He did that for years before he was diagnosed with MS. Used to drive me nuts! I have a nursing background and when he came back from the doctor, I wanted to know everything—his blood pressure, what lab work was done, what was the differential diagnosis, what is the treatment plan, what options was he given before he made a choice, etc. Needless to say, I never got that level of detail from him because not only did he not ask those questions but if he did, he didn’t “hear” the answers and could not, therefore, provide any details.
One day after such an experience, I blew up and demanded that I be allowed to accompany him to his next visit. Not only was I going, but I was going to make an appointment for him with a neurologist and he was going whether he liked it nor not! I knew he had MS. I also knew he was not telling the doctor what he needed to share so that the doctor would consider that possibility. THAT was the moment that I truly assumed the beginning of my caregiver role. I decided his medical care was coming under my supervision and that was that!
To read more go to: http://multiplesclerosis.net/living-with-ms/im-the-primary-healthcare-provider/

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We Love To See You But….

Donna Steigleder / January 20, 2014

Lynn loves to socialize. He’s much more outgoing than I am and often wants to invite people over; especially family members. However, what I hear when he says so and so is coming over is this: I’ve invited people over who may or may not have been exposed to a cold, flu, norovirus, or any other germs that could make me extremely ill and bring on an exacerbation or deterioration in my condition that could have long term effects. Plus, I will likely spend a lot of energy talking and entertaining which means that what little energy I have will be totally used up and it will take me 2-3 days to recover so be prepared to provide even more care for me than you normally would. In the mean while, I need you to fix a little something for them to eat like maybe a roast, baked potatoes, and some vegetables, while caring for me and trying to work and I would really like the house to look presentable though not necessarily festive. “Really?” I say.
Don’t get me wrong, I also like to see family and friends and I really enjoy our time together but now that Lynn has an autoimmune disease that makes him susceptible to other illnesses, I see socializing in a whole new light. Here’s what I would like to say to our guests (and actually sometimes do).
Read more at: http://multiplesclerosis.net/living-with-ms/we-love-to-see-you-but/

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Is That Your Final Answer?

Donna Steigleder / January 12, 2014

Once you become a full-time caregiver to your spouse, the relationship takes on many new dimensions. While in the traditional marriage roles, the husband takes care of the wife and makes many of the final decisions regarding big issues, if the one being cared for is the husband, and the one doing the caring is the wife, those roles often reverse. That reversal has happened to me and my spouse, Lynn. Though I try to maintain our husband/wife roles in our marriage, I have to admit that now that I do almost everything for him and our home, it’s really difficult not to just make all the decisions without including him.
Continue to read the rest of this post at
http://multiplesclerosis.net/living-with-ms/is-that-your-final-answer/

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Planning, Time, and Flexibility: Essential Ingredients for the Holidays

Donna Steigleder / December 30, 2013

Christmas is a wonderful time of year; full of fun, excitement, and family gatherings. For weeks beforehand, I spend time decorating, planning, anticipating the good times and envisioning the perfect holiday. Like so many dreams, reality is rarely the picture perfect vision that I have in my head. That is particularly true now that MS is part of our lives.
Lynn and I have three big family get-togethers at Christmas—my parents and siblings come the week before Christmas, our kids come Christmas Eve, and his family comes Christmas day. Each is a wonderful time of creating memories and eating way too much food. Even though these times are lots of fun, they are also very challenging.
Holiday celebrations are always held at our house since Lynn’s wheelchair cannot enter anyone else’s house in the family. Even though we often order pizza or one of the other family members will do the cooking, there is still a lot of preparation required to host a gathering. Everything takes more planning, more time, and great flexibility if you’re hosting the party at your house. There’s the need to buy and prepare some, if not all, of the food, clean the house, and decorate (or make everything look festive). When everyone gets there, you help make your guests comfortable, assist those who need to heat up items or put out food to do so, make sure everyone has what they need to eat the feast (the fun part), clean up afterwards and put everything back into its original place. Even if you and your family members are healthy, it’s tiring to host a party at your own house. If someone in your family is not healthy, then it’s exhausting.
Read more at: http://multiplesclerosis.net/living-with-ms/planning-time-and-flexibility-essential-ingredients-for-the-holidays/

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Hold My Hand

Donna Steigleder / December 30, 2013

Dear Lord,
I don’t know why you do the things that you do
or why you let happen the things that you choose.
I’ve often doubted your wisdom and resented your ways;
not willing to accept what I was facing that day.
Like when I was a young and my friends turned away,
I was sad and alone and tempted to stray
but you taught me the value if I would obey
and brought me a new friend I have to this day.
I went on through school and a nurse I became
my dreams of my childhood were just not the same
I landed a job that allowed me to grow
in ways that prepared me for what I must know.
The trials of a marriage destined not to succeed
taught me reliance on faith for my everyday needs.
Single parenting was hard and many failures I see
Looking back at my choices and need to be me.
But God was right there standing close by my side
keeping me going and being my guide.
A special needs child and another too free
some hard times, some good times, some just meant to be
Though hardships were many and challenges not few
to loving and caring adults they both grew.
My spouse I did meet through your influence as well
A personal ad I did answer, do tell.
We married but struggled in our attempt to unite
our children and habits and expectations weren’t right.
I prayed we’d find closeness and a true family become
But try as we might that “oneness” didn’t come.
Then much to our sadness MS found its way
into the dynamics of family each day
I asked many times “why us?” and I prayed
for a miracle or something to take it away.
But in your wisdom this hardship worked out to our good
We’re closer and happier than we thought that we could.
So thank you, Lord Jesus, though I don’t understand
I’ll trust you and turn to you, just keep holding my hand.
Amen

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All He Can Do Is Yell

Donna Steigleder / December 25, 2013

I’ve never been comfortable with strong expressions of anger. I’m the sort of person that prefers to compromise and resolve things peacefully so one of the more difficult challenges I have faced is how to handle Lynn’s frustrations expressed through anger.
Today as I was working at my desk, I heard over the baby monitor I use to make sure that I hear him if he needs anything, the increasing volume of Lynn’s voice as he was trying to get his voice recognition software to work properly. As I sat there, I could hear him first repeat the same command three times, each time a little differently. Then he started adding in a few expletives and some not very flattering descriptions of the software program. Finally, the volume and expletives became so intense, I could no longer listen to it for fear that he was about to take his headphones off and through them across the room.
Read more at:
http://multiplesclerosis.net/living-with-ms/all-he-can-do-is-yell/

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Thus the Week Before Christmas

Donna Steigleder / December 18, 2013

Thus the week before Christmas and all through the house
Not a creature was stirring not even my spouse
A small Christmas tree had been placed on a stand
So he could “see” Christmas from his power wheelchair
The last of our children this past year had been wed
So most of my parenting worries I’d shed
While Lynn takes a nap, I put on many hats
I cook and I clean and on my keyboard I tap
When out of the quiet, I hear Lynn start to chatter
I listen intently wondering what’s the matter?
“Hey Sweetie,” he calls, “can you come get this trash?”
Now what is he doing? I muse as I dash.
The room as I enter looks peaceful and glows
With the lights from the tree and the wreath’s bright red bow
When what to my wandering gaze should appear
But his hand inching forward and heading straight to the gear
With a fear of disaster, I step over a split drink
Knowing in a moment he’d cross the room in a blink
More rapid than careful toward the joystick I aim
As he questioned my purpose and asked me my name.
Waking up a bit more, he asked, “What’s that you’re fixin?”
I give him my answer and head back to the kitchen.
In less than ten minutes once again he does call,
A deep sigh I do make and turn back toward the hall.
As I care for his needs and my hands I do dry,
I think of our blessings and tears of joy I do cry
I admit that at times my thoughts are quite blue
But I know in my heart that our faith is our glue
When I fear we won’t make it, I see I have proof
That our Lord is providing with His Word as the root.
His promises have power; His love does abound
His voice is a whisper, it makes not a sound.
Through Christmas He gave us the hope of new life
In His wisdom He gave me to Lynn as his wife
With God’s grace and Lynn’s love, there is nothing I lack
Through my service to both, a small portion I give back.
As I settle back into my chores for the night,
I pray for endurance, understanding and insight.
With a smile I keep going, there’s more to get done
But Christmas is here and we’ve been saved by the Son.
Merry Christmas!

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Follow Me on WWW.Multiplesclerosis.net

Donna Steigleder / December 16, 2013

For those of you to like to follow my blog, I recently began writing for Multiple Sclerosis.Net, an email newsletter that is published weekly. My first article was just printed. In case you’re interested in reading the email newsletter, just go to http://www.multiplesclerosis.net
Adapting Celebrations to Meet Our Needs
Finally all the Christmas decorating is finished! What usually takes me two, maybe three days, has taken me twice that long. But then, almost everything I do now takes twice as long as it did in the past – before my spouse was diagnosed with MS. (http://www.multiplesclerosis.net)

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Cheesecake Makes it All Worthwhile

Donna Steigleder / December 7, 2013

I love Christmas. I’m sure I’m not alone when I say it’s my favorite time of year. I love the excitement, the beauty, and especially the meaning….but it IS a lot of work.
The reason I did not write a blog last week is that I was busy decorating for Christmas. You see, I must have about 2o tubs of Christmas decorations. I have stuff for the inside and stuff for the outside and although it takes a long time and my poor arthritic joints are crying the blues, I enjoy every minute of decorating. However, now it’s a bit more challenging to get all that decorating done and it takes twice as long as it used to do.
Once upon a time, I used to get all my decorating done the day after Thanksgiving. I would start early in the morning and keep at it till it was all done. Now, I always have the first three hours of any day devoted to Lynn’s morning routine of hygiene, toileting, and exercise. Then he rests in bed for 30-60 minutes depending on how restless his legs become. During that time I eat breakfast and start cooking whatever is in low supply for his diet. Then I get him up, connect him to his peddler, work to get him comfortable, and head back to the kitchen to finish cooking. Shortly after this he’s ready to eat breakfast. All and all I usually start being able to decorate about 2-3:00 p.m.
Though he really does try not to bother me too often, on average I get a “call” from him every 45 minutes to an hour. When I answer the call, I’m usually involved with him from 15-20 minutes depending on what he can think to ask me to do. (He stores up his requests so that he won’t bother me as often).
On advantage to decorating now is that once Lynn goes to his room after his morning exercise, he does not venture out again till the next day. Therefore, I can spread out whatever I’m using as much as I need to do. I don’t have to worry about him running over debris with his wheelchair or moving things to where I can’t find them. All decisions related to how or what I decorate are totally mine. His participation is very limited.
While Lynn has never been one to go all out and decorate like I do, he has always enjoyed the season’s festivities as well. We both were involved in choir at church and so we had rehearsals and get-togethers we enjoyed as we prepared for the Christmas cantata. There were family and friend get-togethers where we socialized with those we may not have seen all year. And Lynn loved to cook. He loved to invite family and friends over and provided them a feast.
Now all that has changed.
Lynn still wants to have family and friends over for get-togethers but now I do all the cooking (and I’m not a gourmet cook like he was; nor do I especially like the challenge of cooking for a group). If we have people in, I have to split my time between making sure all the food is prepared and everything is available and running smoothly and taking care of Lynn’s needs. I get to do very little socializing. I stay near Lynn all the time; watching for signs of fatigue or getting overheated. We often have to excuse ourselves so he can bet cathed. He doesn’t like to be fed in front of others so I get him finger foods to nibble on and later I feed him something when he goes back to his room. All too often he feels miserable when others are having fun and that becomes very depressing when it happens so often.
But there is one bright spot for him that he always looks forward to. Lynn always “cheats” on his diet at holidays and gets a big slice of cheesecake. He loves cheesecake and he looks forward to it with excitement every holiday. Somehow that slice of cheesecake seems to make it all worth while.
Even with all the challenges and disappointments, Christmas is a special time of joy, love, and sharing. It’s more difficult than it used to be, true; but it has never lost that special place in our hearts. We still recognize the meaning of Christmas as a time of newness and birth. Christ’s arrival brought hope and promise of a better tomorrow. It was a time of celebration and love. It’s still that for us. It’s a time of joy, remembering that there are possibilities of a better tomorrow in the year ahead. There is the love of family and friends which is renewed when we gather together. There is the promise that thought we struggle with Lynn’s condition each day, there will come a time when we join Jesus in heaven and Lynn will walk again without any fatigue or stiffness and with lots of energy and strength. It’s no wonder I like Christmas.

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I'll Miss You, Patrick

Donna Steigleder / November 25, 2013

It was with great sadness this week that I learned of Patrick Leer’s death. He passed away at home in the presence of his daughter, Megan, after battling unsuccessfully lung cancer with metastasis to the brain. Throughout his journey, he remained a fighter, keeping a positive outlook and determined not to let the disease win, but win it did on November 11.
When I first decided to write my blog, it was actually with the expectation that no one would likely read it but family even though I hoped that maybe a few other caregivers of family members with MS might stumble across it and we could connect through sharing our experiences. Patrick was one of the first to make that connection with me. He had been caring for his wife, Patti, for over twenty years after she woke up one Thanksgiving morning unable to walk. Their’s was a sudden entry into the world of MS and his wife progressed in her condition until for her safety, she had to live in an assisted living facility. She developed MS dementia and may not have been fully aware even of her husband’s condition and eventual passing. I remember Patrick sharing with me early on that caregivers often die before the one they have cared for does. I also remember when he first wrote about having cancer his commenting that he had become a statistic; a caregiver with a serious condition that might take him before his loved one.
Reading about Patrick’s struggles and the impact it had on his ability to care for Patti brought home to me once again my fear of the same. I often worry that I’ll have a heart attack or stroke and not be able to care for Lynn any longer. Cancer is not as prevalent in our family but heart disease is and I’m sure I’m high risk for it. I rarely get sufficient sleep; I eat to stay awake so I’m gaining weight again; and I get no exercise so even the slightest exertion now makes me short of breath. All are high risk factors for heart disease. I keep thinking that I need to get on my treadmill each day for 30 minutes or I need to cut back on eating so many snacks or I need more sleep but I’m honestly at a loss on how to do any of those things.
I keep thinking I’ll get to bed earlier but I seem to get there later all the time. I often am so sleepy by 4 pm, that I fall asleep at my desk. Some days I actually lie in the floor for a few minutes to take a nap or even lay on the bed and take one for an hour. Those precious extra minutes keep me going till I can really crawl into bed around 2 a.m. each night. I try hard not to nap though by snacking on things that will give me bursts of energy but which also are high in calories. They help me keep going but my clothes are sure getting tighter. Then there’s the issue of exercise. The only time I could change into clothes, be able to exercise for 30 minutes, and change back out again without being interrupted is around 1 a.m and that’s too late to do something that would just wake me up. These things just sound like excuses to not take care of myself but in reality, they are choices I’ve made to take care of Lynn and our needs instead of me.
My children are worried about what will happen if I can no longer care for Lynn. I understand their concern because in reality none of them could quit work and care for him; much less two of us. They would certainly want to do so but they have to work and don’t have extra money to hire a caregiver so care could be provided at home. Therefore, all our possessions would need to be sold so that we could go into assisted living. Lynn is convinced he would die if I died first because he would not want to go on. A large part of that is because we’re close and he would grieve my loss but the other part is he knows in assisted living he would not get the level of care that I give him and he would likely die from complications due to that lack of attention before many years.
It’s really a shame that there is no assistance for caregivers that can come into the home and support them so that in the end two don’t need to be cared for instead of just one. Just another short-sighted aspect of our medical care.
Nuff said on this depressing topic but in closing I do want to say that I truly admired Patrick. He was a dedicated husband and father for many, many years when men with less integrity would have rode off into the sunset. I’ll miss you Patrick …. but not nearly as much as Patti will even though she won’t know why.

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How am I Thankful? Let Me Count the Ways

Donna Steigleder / November 9, 2013

I’m ashamed to say that I often use this blog to vent. When I’m tired and discouraged, I find it therapeutic to talk it through on this blog knowing that there are those out there who have gone through the same things or are experiencing them now, and that helps to know I am not alone. When I receive comments of support and encouragement, it’s better than my own private therapy session. So I’m thankful for those who listen to me whine and share and to those who share with me as well.
I’m thankful for my husband. Though providing for his care is overwhelming at times, I’m thankful that he is here for me to care for. I’m thankful for his encouragement and his caring. He’s always looking for ways to make my life easier and to provide his support. I admit that I often don’t allow him to care for me because I’m so used to caring for him, but I appreciate his reaching out to me.
I appreciate his humor; he is often able to see the funny side of life. I appreciate his faithfulness; he strives to be a faithful servant of our Lord, Jesus Christ, with whatever abilities he has. I appreciate his knowledge; I’ve met few people who know more trivia than he does! Plus he seems to know something about just about anything!
I’m thankful for Lynn’s abilities. His mind is very alert and as I said above, he’s very intelligent and useful. Though he cannot physically do many things, he can tell me how to do them or guide me on how to get someone else to do them. Though he can’t write, he can speak and he can see so he uses software to write on his behalf and therefore, remains productive and has goals. Though he has selective hearing, his ability to hear has not been touched by MS. When he puts his mind to it, he can clearly hear the same as I do. His essential organs still function to keep him alive and healthy though not untouched by medical limits. Though he was a gourmet cook and can tell what’s in a dish by taste and though I tend to burn more than I like to admit, he always compliments what I make him and phrases my cooking to others.
I’m thankful for my job, my boss, my staff. I love what I do and where I work. I love the people I work with and for. Their encouragement keeps me going and the work gives me purpose and reward…as well as enough income and benefits to provide Lynn with the care he needs and both of us with all our essentials and many of our wants.
I’m thankful for my children and their spouses and my awesome grandson who brings us so much joy with his love of life. All of our children would drop whatever they are doing at a moment’s notice to come to our rescue if needed. We KNOW we are loved by them and we know how fortunate we truly are to have been blessed with such good people in our lives. Not only do we love them as our children but we love and respect who they are as individuals in this world. We are truly blessed by their presence in our lives.
In the same way we are blessed by our extended family. Lynn and I both have wonderful, caring, and supportive parents and siblings. Each side of our family gives us love in abundance and it’s so special to spend time with them when the opportunities come.
I’m thankful for our church family. Our church family truly walk the walk of Jesus’ loving example. Gethsemane Church of Christ is a powerful example of walking the faith; of giving and giving and giving through God’s love; of reaching out to show they care and of never forgetting that you exist. The last we were able to go to church was in the fall of 2009. I was rehearsing with the drama team for Christmas. Lynn went into the hospital and they had to find a substitute for my part. Though I was replaced in the role, they never replaced me or us in their hearts even though we’ve been “out of sight” and could have been “out of mind” for some time now. They have never stopped caring and for that

we are truly thankful.
I am most of all truly thankful for the knowledge that I have a Savior who will forever be with me. It’s amazing how He faithfully meets our needs. He doesn’t remove the challenges; no Lynn still has MS and my arthritis is making it more difficult by the day to provide his care; but He gives us the resources we need just in time; every time. Sometimes His answer to our cries is “wait” and sometimes it’s “no” but it’s always, “I’m right here; just hang on.” He is our safety net and the light in the storm. Always loving; always caring; always there…forever and ever.
For all these things and so many more, I am truly thankful and awesomely blessed.

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Take Care of Myself? LOL

Donna Steigleder / November 2, 2013

I read an interesting article on the Caregiver Space this week which has led me to think a lot of taking care of myself and why I don’t. The article was called “6 Reasons Why Caregivers Don’t Self-Care (the way you’re telling us to)” http://www.thecaregiverspace.org/blog/6-reasons-caregivers-dont-self-care-way-youre-telling-us/ It got right to the heart of why; at least for that person. Of course, some of her reasons were not the same as some of the reasons I have but many were very similar.
Here’s my version of her same theme:
1. Take a walk – As I’ve mentioned before, I work from home and one day a week (sometimes more) I go into the office. On those days I usually have a lot of meetings to attend. My office is about eight blocks from where those meetings usually occur so I walk there although I could wait on a transportation service that comes around regularly. I walk though because I never get outside except to walk the short distance to my mail box. I enjoy the outdoors but if I go outside for any length of time I have to set up the baby monitor and constantly clean up to go back into the house to address what Lynn needs. Therefore, getting into a major “dirty” project is not something I do often. Furthermore, I cannot walk any distance from my house since the baby monitor does not project that far. If I want to go anywhere for more than 30 minutes, the concern is that he will need to be cathed and will have an accident if I can’t get to him promptly. Therefore, I do not go for walks.
2. Use a treadmill – I actually have a very nice treadmill in one of our rooms that Lynn used before his balance got bad. I had every intention to start using it again because I realized as I walked up the hill to those meetings I mentioned above, I become quite winded. So, I had my stepson clear me a path to the treadmill…I have not gotten on it yet. What I’ve realized is that to use the treadmill requires prep time and cool down time plus dedicated time to walk. Timing the ability to do that requires coordination of activities with Lynn’s bladder and other needs. Also, I work seven days a week so that I can keep up with my office work since I have so many interruptions during the week. Therefore, if I’m not doing necessary house things like cooking and cleaning, or necessary Lynn things, I’m working and I truly do not have a spare 30 minutes in there anywhere.
3. Soak a hot bath – When you have so many things to be done in a short amount of time, relaxing in a hot bath does not seem to be a priority. For me, I jump in the shower, maybe take a few extra seconds to enjoy the heat on my muscles but then it’s back out. I shower with the door to the bathroom open so I can hear him if he needs something right away. My first stop (often before fully dry) is to check on him and often he’s calling for attention before I can do that.
4. Hire help – yeah right. Most people assume caregiver professional help is paid by insurance. Wrong! It’s not covered by insurance and it’s not cheap. Plus you have to orient whomever comes over to his “routine” and you need to be vigilant that they are performing their duties as specified. I would love to have paid help though but I already have so much debt related to buying the things he needs to feel better that I have no extra income.
5. Help from family and friends – we are blessed to have many kind and loving family and friends who help us out. I truly don’t know what I would do without them. One such angel just left my house after cutting the grass, weed-eating, and cleaning up leaves. All this he does without being asked. He just shows up, does the work, and leaves without a word. He didn’t even come into the house today because he might have shingles and didn’t want to expose us. See what an angel he is? We have many such angels in our lives and their love and assistance helps me to manage all the chores and care needs I have that take me away from being available to Lynn. I truly don’t know how those of you who do not have this support make it.
6. Get plenty of sleep – LOL. How I wish that was possible. On average, I get 5-6 hours a night–occasionally less (usually when I have to go into work); rarely more (maybe on a weekend if we don’t have someone coming over to help us with something). I usually get to bed between 2-3 a.m. I get up most days between 8 and 9; however, I usually am up twice during the night with caregiver duties so I’m always sleepy; always tired. I survive on caffeine – either pill form or coffee. I can’t always drink the amount of coffee I need due to stomach irritation but I’ve found caffeine pills help. I try to limit using them until I have to drive but I am honestly dangerous on the road much of the time without them. I get so sleepy driving that I fear I’ll have an accident. There are times every day around 4 pm. that I truly cannot keep my eyes open and they shut on their own. If I’m driving home from work at that time, after 10 minutes on the road, I catch myself nodding off so I have to stop for coffee or something to eat if I don’t use the pills. Yeah, I know I shouldn’t but when you weigh car accident vs. effects of caffeine over time; caffeine wins.
7. Keep your weight under control – See #6. I eat to stay awake; to give me the energy to go on. I eat whatever I can eat cold and fast. I don’t have time to cook for myself because my cooking time is devoted to making Lynn’s special meals. If I eat his stuff, I have to spend more time in the kitchen which means I have less time for my job and need to work more on the weekend to make up the time. So I eat already prepared things. Most are high calories unfortunately. Okay, I admit, that’s also an excuse. It’s one of the ways I pamper myself and I admit I use it as self-indulgence. So…come on stretch pants.
Since I’ve started writing this blog, I’ve been interrupted three times and been pulled away at least 15-30 minutes each time. That’s why I can’t do anything for myself. That’s my real “why”. Self-care takes times and time is not something a caregiver has. So I do a little snacking, listen to an audiobook, and catch a 5 minute snooze to keep going and call that self-care, Donna style.

The CareGiver Partnership: 10 Things You Should Say to a Family Caregiver (prweb.com)
10 Caregiving Tips for Caregiver Awareness Month (pickyourpain.org)
Are Caregivers Healthier? (workers-compensation.blogspot.com)
Who Will Care for the Caregivers | by Linda Brendle (lifeaftercaregiving.wordpress.com)

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