MS improved our marriageWhen we first were married in 1997, Lynn and I had difficulty bonding because we were both very independent. Our marriage struggled because we did not “need” each other. Having each been married previously, we were capable of managing homes and children without partners; therefore, adding one to the mix required significant adjustment on everyone’s part. Continue Reading at: https://multiplesclerosis.net/caregiver/choice-control/
- Today our primary mode of communication seems to be through text messaging or tweets. We use short abbreviated bursts of information delivered remotely.
- Texts and tweets allow us to keep our distance from each other. When we text, we send the message to an unseen recipient who experiences an emotional reaction we don’t have to acknowledge.
- Individuals fear to share how they feel about issues due to concerns about being ridiculed, rejected or embroiled in conflict. In today’s society, we do not know how to cope with these emotions; therefore, the fear of them leads us to avoid them if at all possible.
Unreliable attendanceLiving with MS means a lifetime of unpredictability. You may feel perfectly fine when you go to bed, but sometime during the night, a significant front moves through the neighborhood wreaking havoc on your body. Suddenly, getting out of bed to go into work would require the assistance of a powerhouse Olympic team, only they didn’t happen show up at your door to lend a hand this morning. Therefore, not only can you not go into the office, but neither can your caregiver who has to stand-in for the Olympic team and help out. Continue Reading at: https://multiplesclerosis.net/living-with-ms/how-fmla-can-help/
Fell in love with his singingLynn had the most beautiful tenor voice you would ever want to hear before his MS progressed this far. It was his singing that sealed the deal for me in deciding to take the chance on marrying him and bringing our two families together. I had been burned badly in my first marriage and was very hesitant to remarry. Lynn was just as reluctant as I was as far as setting a date, but he was very romantic. Me on the other hand – I wouldn’t let my guard down in order to give him my heart either. Continue reading at: https://multiplesclerosis.net/caregiver/unexpected-sadness/
Have you heard of Typhoid Mary?Mary Mallon or Mary Brown (she used both names) worked as a cook and harbored the typhoid bacteria in her gallbladder. Wherever she worked, the families in those households became sick, and many died, but Mary herself never became ill. Authorities believed that Mary infected over 50 people with typhoid, several of whom died. They met with her and explained that she probably carried the germ in her gallbladder. When asked to stop working as a cook voluntarily, Mary refused because she did not believe in the germ theory. She asked, “How can I be a carrier if I have never been sick?” Continue reading at: https://multiplesclerosis.net/caregiver/immunocompromised-protection/ to find out more about why I have to avoid people who might be sick to protect Lynn from getting sick.
I have always had a tough time saying no to anyone. Saying no fills me with
• feelings of deserving blame especially for imagined offenses or from a sense of inadequacy;
• a feeling of deserving blame for offenses;
• the fact of having committed a breach of conduct especially violating the law and involving a penalty
. I like to solve problems and make others feel better. I, therefore, tend to suffer from a lot of blame if I can’t solve the issues presented for a resolution quickly or at all. I feel like a failure creating feelings of depression and anger.
On the other hand, pushing to answer complex problems can result in positive consequences, too. To avoid feelings of guilt, I struggle to try harder to succeed in reaching my goal of meeting the person’s needs, and it helps me to be more creative. However, often along with the added energy and motivation comes additional stress and anxiety.
Continue reading at https://multiplesclerosis.net/caregiver/retirement/
Getting ready for the holidays at my house incorporates specific considerations that many families who do not deal with chronic illnesses do not consider as part of their preplanning task list. Since most of you readers have similar concerns, you probably know where I’m going with this but for new caregivers just starting to deal with the holiday season, here are some of the staging considerations that I do in advance to help the gathering go as well as possible.
Continue Reading at https://multiplesclerosis.net/caregiver/holiday-preparations/
If I’m going to be away from home for any length of time, I try to arrange for someone to stay with Lynn for most of the time that I am away. I sometimes have to leave before the person staying with him can get there or they have to leave before I can get back. That was the case this week. I had to go into work. The person staying with Lynn was coming at 11:00 and leaving at 2 so I knew he would be home alone for at least an hour and a half since the meeting I was attending ended at 2.
When I left at 11, my “back up” was not here yet. Therefore, rather than just turning over his care to someone, I had to plan for “what if.” What if she has gotten stuck and can’t make it? Just in case that might have happened, I organize things to be “in reach,” make sure he has water and his urine drainage bag is empty. I have to leave the front door unlocked so the person can get in, make sure everything is turned off or on for safety and then head out to work with instructions to “call if she doesn’t show up.” I didn’t get a call so I assumed all was well.
Once I’m at work, I’m focused there. Much going on; much to do; no time to check on Lynn. As often happens, everything takes longer than anticipated. The clock is now running beyond the time he and I had planned that I might be home. I finally leave work but have to make three stops on my way home and my drive home is an hour long. I send him a text to tell him when to anticipate I will be there and to say I still need to go back out to the grocery store after I get home. I assure him I will run home first, get him liquids, something to eat if he’s hungry, empty his urinary bag and get him settled before I run out again to the store. By the time I get there, he has been home alone for three hours. That’s the longest I’ve ever had to leave him alone.
Every time I leave the house I have to make a calculated guess on how much risk I will take with his safety and comfort if I have to leave him alone. In many ways, leaving Lynn home alone is like leaving a toddler at home (except a toddler can get into more trouble). When no one is around, Lynn cannot access anything that is not within his immediate reach. If he drops something, it’s as good as gone. He often does not have the strength or dexterity to lift or move items left for him to use; we never know how his fatigue and/or weakness may limit his strength. Therefore, if I’m leaving the house, I have to:
- Leave a thermos of hot tea and one of cold water within reach. He needs both because sometimes he is very hot and needs to cool off or just the opposite; very cold and needs to warm up.
- Have a snack available if I’m going to be gone a long time (must be able to be eaten with fingers; he can’t hold utensils).
- Leave an empty catheter bag.
- Arrange for entertainment and leave a charged cell phone nearby.
- Make sure he’s comfortable and he has access to his medical alert necklace.
Continue reading at: http://multiplesclerosis.net/caregiver/home-alone/
I have not always been a full time caregiver. As I look back over Lynn’s journey through the maze of MS progression, I have had different roles along the way.
On the Outside Looking In Role
For several years before he was diagnosed with MS, I watched his symptoms develop from afar. He would mention an occasional problem with foot drop or weakness in his leg. I would recommend he see a doctor but he assured me it was “just the heat” or “sciatica from sitting on his wallet.” Knowing his father had MS, I would suggest he see a neurologist and he would always say his doctor had ruled that out as a possibility. It was evident that the suggestion of possible MS was not an acceptable one and that I should keep my opinions on that subject to myself.
The Interferer Role
Gradually, the symptoms occurred more frequently and in more areas of his body. I watched and could no longer stay silent and insisted that I start attending his medical appointments so I could understand what was happening too. He didn’t want me to come but after a heated debate, he gave in. He shot daggers in my direction when the doctor asked him how he was doing and I piped up to contradict his, “just fine,” to say he was not fine but was having trouble etc., etc., etc. My interference lead to a referral to a neurologist, testing for MS and finally, the dreaded diagnosis.
The Researcher Role
Still unwilling to talk about MS, Lynn needed information; however, he was afraid that if he learned what to expect, he would develop all the symptoms he heard about and would become an invalid like his Dad. Where I picked up all the handouts available in the doctor’s office and promptly started an internet search, he removed the materials from his sight and had me shut down the websites if he caught me reading them. He didn’t want to hear anything I read and absolutely did not want to discuss it…but, he needed information. I learned to just wait. He eventually asked a question here and there and soon I would happen upon him reading an article on the web. I implemented some of the things I read; asked questions about others at the doctor’s office and eventually helped him obtain the information he needed in the way he needed to receive it.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-stages-caregiving/
The provisions of FMLA say that you cannot face disciplinary action (including termination of employment) if you need to miss time from work to provide “care or support” for your immediate family member with MS…at least for a while. It does have its limits. If you work full time you can have up to 480 hours off, without pay, each 360 days. The 480 hours does not have to be taken all at once. It can be taken in as small as 15 minute increments if your employer counts its work time in that small of an increment which is the standard for most jobs (meaning you’re paid for each 15 minute period you work). You can also take the time off with pay if your company has a paid vacation or personal leave policy. In other words, if they allow you to take time off using paid leave to take your car to the shop for repairs; they have to allow you time off to take care of your spouse using that same leave.
You can use FMLA for any reason that meets the definition of care or support. The obvious ones are to take your spouse to medical appointments, bathing and dressing them, helping with therapy, etc. But you can also use it to clean your parent’s house if they physically cannot, run their errands if they cannot drive, provide emotional support, and take care of their banking, etc. if they cannot do it themselves. The only thing to keep in mind is that you only have 480 hours each 12 month period. Once you use it up, it’s gone till the year starts over again. It’s also one of those situations where if you don’t use it, you lose it. You can’t carry it over to the next year so that you can be off for an even longer period.
There are, of course, some rules you have to follow. First, you must prove that you qualify for this law’s protection. You must have been with your employer for 12 months though the 12-months does not have to be continuous. Second, you must have worked at least 1,250 hours in the 12-months just prior to when you need to take the time off. 1,250 hours is about 31 weeks or almost 8 months if you miss no time and are working 40 hours a week. The other point is that if you don’t work 40 hours a week, you are not entitled to as much time off. If you want to know how much time you’re allowed, here’s the calculation.
Number of hours you work per week /40 (divided by). That gives you a percent. (Example 30/40=.75) You take that percent and multiply it by 480 to find out how many hours you can have off. (Example 480 x .75 = 360 hours)
Once you’re qualified then you have to provide medical documentation that you or your spouse, parent, or child has a serious health condition. Usually your employer has a form for you to take to your efforts made to maintain or restore physical, mental, or emotional well-being especially by trained and licensed professionals provider for him/her to complete. Your healthcare provider and you should talk about how often you will need to be available to support your family member. I recommend estimating on the high side to be safe but also be realistic. For example, you might need an hour each morning to get your loved one ready for the day. That would be five hours per week but do you also on a fairly regular basis need to take several hours off for medical appointments or to run errands? If you can’t do these things outside of work time and have to do them during working hours, include that time. Just remember, when it’s used up, it’s gone AND you’re likely using your vacation time up to earn pay for this time. Many employees assume because they have to be given the time off, their employer has to pay them extra pay above vacation time to provide this care. That is not true. The law only protects your job and access to your benefits. It does not provide for pay.
continue reading at: http://multiplesclerosis.net/living-with-ms/fmla-supports-caregiving/
One of the greatest challenges of living with MS is how unpredictable each moment of your life becomes. I’ve shared that frustration before but I keep coming back to it because it’s such a constant struggle. Adapting to it not only means being prepared for the unexpected and being flexible but also being prepared to accept disappointments and to let go of planning and any sense of control.
This week has been that way. We found out early in the week that Lynn was a finalist in the National Indie Excellence Book Award contest for his book, Rising Tide. This contest accepts thousands of entries throughout the year and he submitted Rising Tide in five categories. He was a finalist in the category for adventure. Though his book is usually found in the “fantasy” section , his stories are primarily an adventure. This recognition was particularly gratifying because writing has become his “career,” his daily work, since his MS has progressed to the stage that he can no longer do anything physical. He has a friend who comes in weekly to type for him and during the week he uses his slow, hunt and peck typing style to market his book to book clubs. So the first part of the week was “up.”
…but that was Monday, the rest day before his Rebif shot. The rest of the week he has felt tired and generally bad from the Rebif. Each morning he has the hope that today will be a good day but after exercising, eating breakfast, and his morning hygiene routine, he is wiped out for the day and his strength, stamina, and outlook steadily go downhill.
Knowing that is how the week had gone, he optimistically made arrangements for a friend to come by this morning at 10 to repair the hole in the wall his wheelchair handles has made when he turns from the hallway into the bedroom (another challenge of being disabled, repairs that come due to equipment not suited to the size of the house or vise versa). We got up at 7 (we have to have three hours at least to prepare for the day) so he would be ready by 10. By 9 he had to call and cancel. For the third Saturday in a room, he just didn’t have the energy to supervise a construction project.
From Lynn’s perspective, he’s getting sick and tired of being sick and tired. It’s very discouraging to think that it might take another three months before he adjusts to the Rebif enough that he does not feel lousy all the time…and then there’s the possibility he won’t adjust and it will always make him feel this way. From my perspective, I know that my ability to plan for work, for vacation, for trips to the doctor, store, library, wherever… is always hampered by how he feels at any given moment. For example, I just came back from the library where I picked up several books on tape (that’s how I read now since I no longer have time to sit down and actually ready anything). In order to go to the library and back–a fifteen minute round trip at most–I had to make sure his bladder was empty, he had his liquids beside him, he was comfortable in his wheelchair, he was connected to his peddler, and his TV channel was set to where he wanted it to be; all before I could consider getting myself ready to walk out the door. Walking back into the house, I yell, “I’m back,” and of course, I hear, “come here when you can.” He needed another catheterization, his tea was not hot enough, and he was congested and needed nose spray. It’s always something…
Lynn noticed a commercial this morning where a caregiver for a patient with prostate cancer was talking about her role as a caregiver. He looked at me and said, “why does she call herself a caregiver? She doesn’t do half of what you do everyday for me.” I explained that each disease has its own unique caregiver needs and often the emotional support and managing the home and appointments for someone can also be very demanding even if you don’t have to physically lift, move, feed, bath, clothe, entertain, etc.
I understand where he was coming from; however. There are certainly degrees of caregiving just like degrees of being sick. I subscribe to a caregiver online magazine. I briefly look at articles to see what might be helpful. I know each person’s situation is very challenging and it’s very difficult to be a long distance caregiver to manager situations for a parent or relative in another city or to live with someone who physically is affecting physiological or psychological functions but not organic structure; performing or able to perform a regular function but mentally is dysfunctional. But caring for an MS patient is uniquely challenging, I think. For most other conditions, you can get into a routine, know from day-to-day what needs to be done, and plan ahead. For MS, that’s not true. MS affects so many systems of the body and can be influenced by the weather, an illness, seasonal changes, the time of day, rest, diet, almost anything and whatever that effect may be will impact their bodies either in how they feel or how they function. Therefore, as the caregiver/business manager/entertainment arranger/homemaker/etc, you can’t effectively plan hour to hour sometimes much less day-to-day. For me,that is perhaps the most challenging.
Next week will be our first virtual support group conference call. If you, too, have similar challenges and would like a place to air your concerns, frustrations, triumphs, and hopes, please join us. Contact me through Skype. My ID is MScaregiverdonna. Send me your contact information and I’ll add you to the conference call group. I’ll give participants a call around 2 pm EST (give or take a few minutes in case I’m in the middle of a catheterization or something) on Saturday, June 16. I look forward to getting to know those of you who might want to participate.
Till next week….