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Realities of Life

For the most part, our home life is fairly stable meaning we have the same things happening day in and day out. We have a routine – I get Lynn up for the morning and help him with his exercise, take him to the bathroom for his bowel regimen, put him back to bed and do a partial bath including skincare, and he takes a nap to recover from that activity. It takes about three hours to do all that. None of it is complex (except sometimes the skincare) but most of it is very physically demanding and Lynn can do nothing to help with it except cooperate with what I do to him. Once this morning routine is completed, the rest of the day is pretty basic attendant type care (assist with eating, getting things to drink, changing position, helping him write, etc.).

At night, the work increases again by preparing meals, etc., for the next day, bath time, nighttime rituals, etc. Including my own personal care and feeding, it takes about five hours to get it all done and get us to bed. Again, the work is not complex care; just physical and time-consuming. None of this is complicated but all of it is necessary to maintain quality of life that is not miserable every minute of every day till you die so it’s very important stuff. It is also stuff that if you cannot do on your own, is very, very expensive to have someone else do for you unless you are fortunate enough to have family or friends to help you out.


Continue reading at

 https://multiplesclerosis.net/caregiver/realities-of-life/

Fear of the Future

One of the ways we cope with Lynn’s condition is to deal with what we have “today” and not look too far ahead.  That’s especially true for Lynn; not as much for me.  My personal make-up requires that I have a sense of control about my life so I ALWAYS look ahead and plan for what’s coming up. I hate surprises and am not an impulsive person, at all! While that works for me, Lynn doesn’t want to think about the future.  He might plan for projects that he wants to do but he doesn’t want to really look at the future.  He’s almost, but not quite, the type to bury his head in the sand.  That’s especially true when it comes to MS.
Ever since he was diagnosed with multiple sclerosis, he has not wanted to learn anything more than he needed to know to manage his symptoms for that day. I was on-line reading all I could find the day we got home from the doctor’s office with the diagnosis. Not Lynn; he didn’t want to know anything about it and would ask me to close the screen if he came into the room.  Part of that, of course, was the fact that he had “lived” MS with his father who had died in his 40’s after a very progressive battle that put him quickly into a wheelchair and then a bed where he stayed till he died of complications.  It’s Lynn’s philosophy that if you are told about negative things that “could” happen, you’re more likely to subconsciously progress in that direction.  I can see his point of view on that so I try not to bring up symptoms he does not currently have and I don’t talk about disease progression.  When he talks about being able to stand independently or do this or that (things he has not done in over two years) then I mutter encouraging words, try to help him with his physical therapy toward that goal, and try to support his mental hope. Then in private, I continue to research what might be causing any new symptoms I might see and look for disease modifying therapies or devices to assist in his daily care.  I also admit that I DO think a lot about future care even though I try not to.
Currently, I am very fortunate that I can work from home and I have his family who comes in twice a week to help.  His mom and sister come on Mondays and his son comes on Wednesdays.  They are a God-send because on Mondays I have a lot of things scheduled that take time and it helps to have Lynn’s needs being met so I can focus on those things.  On Wednesdays I usually go into my office at work for any face-to-face meetings I might need to attend and to just remind people that I actually work there. However, I know at any point that assistance may no longer be available.  His son could get a job that required him to physically be at the office very day (he currently works from home and just works here on those Wednesdays).  His mom could get sick or his sister change jobs and they would no longer be available either.  My daughter used to help out but now she is a full-time caregiver for her son who has special needs and she can’t really manage his care and Lynn’s except for short periods; certainly not on a regular basis. I had a friend who used to come regularly to stay with him a few hours each Thursday but her personal demands have changed and she can rarely come any more.  Therefore, as time goes by my options for support have had a way of dwindling down.  That’s pretty common for long term conditions. People can help temporarily but long term is another matter.  So, I know that at some point, I’ll have to figure out how to pay for someone to come to my home or come up with another solution.
It’s discouraging the way resources are made available to those who do not work but for those of us who try to pay our own way, we can’t get any help.  For me to get assistance, I would need to quit my job, go on welfare, and maybe declare bankruptcy. I currently spend a lot of money on supplements that have really improved Lynn’s health but which are incredibly expensive!  I’m spending $3-4oo easily each month on supplements. Then there’s the grass-fed meats which are more expensive, medication co-pays, assistive devices that we find useful but which are not covered by insurance, and so many other expenses that to think about trying to come up with money to pay someone to stay here while I go into work, is mind-blowing… so I just don’t think about it yet.  I’ll deal with it when I have to since nothing is going to change between now and then…or could it?
A caregiver support group formed at my church in April.  We meet once of month.  In the group, we have one person whose spouse has a heart condition that limits his functioning, another whose spouse had a brain injury who needs significant support, one whose spouse has Alzheimer’s or something similar and three who had parents with cognitive or physical impairments needing care.  Since April, two have lost their loved ones and another has had a series of heart attacks which are limiting his life expectancy to months instead of years. As I told Lynn of each of these occurrences, I could see him becoming more and more concerned.
Our last meeting of the group was held at a rehab facility where two of the group had recently placed loved ones.  When I told Lynn about the one going into rehab and the issues associated with trying to take him home (his house is not handicap accessible with multiple stairs to get into the house and significant restrictions inside for using wheelchairs, lifts, etc.), I could tell it really bothered him. Later that day he shared that he was scared.  He’s so afraid that one day he will have to go into a nursing home.  He knows that even a well-run and high quality nursing home would mean he would get limited attention and would often be uncomfortable (he has A LOT of comfort needs.  It’s very difficult for him to feel comfortable and I’m forever adjusting this, moving that, changing whatever).  He also knows that he would feel isolated from family and friends because they would not be around all the time like I am now. He sees this happening to someone he knew who was able-bodied long after Lynn was unable to care for himself and it brings home to him how quickly things can change.
I assured him that as long as I’m able, he will never be put in a nursing home and that even if something happened to me, I’m sure the kids would take him in and work together to care for him. The reality is that I’m sure they would want to do just that, but could they?  They have jobs; they need to work.  They could not get financial assistance to care for him in their homes; just like I can’t, but they could get assistance if he was put in a nursing home.  How crazy is that?  It’s much more expensive to pay for inpatient care than to have a caregiver come to the home for a few hours but the more expensive one is an option, and the money-saving one is not.  Short-sighted? I would say so.
At any rate, I think my assurances helped him not feel as insecure.  He knows I’m overwhelmed with all I do and he knows my physical condition is deteriorating due to the wear and tear on my body from lifting and lack of sleep so he knows that I may mentally be willing but physically may not be able to do so.
So, what was my advise to him?  The same as always and the only thing that’s sure.  Just trust in God to take care of us when we need Him to do so.  He hasn’t failed us yet and He won’t fail us then.  I don’t know what the future holds for us.  I know Lynn’s likely to get worse instead of better.  I know I’m likely to have problems that interfere in my ability to care for him.  Can I do anything about that now?  No.  So I’m going to move forward in the manner I’ve used to cope so far…I’ll think about that later; not now.  For now, today, I have work to do.  He needs to be fed. He’s calling me to cath him.  I need to do some “work” work and I have some meals to prepare.  That’s enough for today.

Awesome News, Patrick!

When I first began to write about my experiences as an MS Caregiver, Patrick Leer was there to share an encouraging word.  Since his first comment on my blog, I have followed his journey in caregiving for his wife, Patti, whose MS has progressed to the point that she is in a long-term care facility ( http://caregivinglyyours.blogspot.com/).  However, not having her at home has not lessened his participation in caring for her.  His dedication to her well-being has been constant and remarkable.  Now Patrick is the one who needs care and support.  Patrick was diagnosed last year with Lung Cancer and a few months ago discovered it had spread to his brain (http://lung-cancer-survivor.blogspot.com/).  After intensive treatment, I am thrilled to share that the brain metastasis is no longer showing on the MRI.  He continues to fight for victory over his lung metastasis but I have no doubt that he will beat that demon as well.  Way to go, Patrick!!  I’m pulling for ya!
Since I have heard about Patrick’s new challenges with his own health, my own personal health and future have been on my mind.  I’m pleased to say that a recent medical appointment indicates I’m doing well other than for on-going struggles with arthritis and the associated pain. It’s odd though how when something starts needling your brain, it seems to come up from multiple sources…
At my last caregiver’s support group at church, one of the participants challenged us to create our own personal mission statement along with a vision for our future and goals to accomplish that vision/mission. Her premise, which I think is spot on, is that we get so engrossed in caring for our loved one that we can easily lose ourselves in the daily struggles.   I totally get what she’s saying because I’m really struggling with even seeing a future beyond tomorrow.
Don’t get me wrong, I’m not being morbid and I’m not depressed, but one of the ways I cope with all that I have to do is not make too many plans beyond today or next week so that I don’t get disappointed if plans fall through. To be honest, if I was not caring for Lynn full-time while trying to work and maintain our home, I would go back to school to get my Masters Degree in Business Administration or maybe Criminal Justice. At the very least, I would study and get my certification as a Human Resources Professional.  However, every time I start to “apply” for one of those, reality sets in. To take a course, you must have quiet time to study, time to think about what you read, complete projects, maybe attend study or project groups, and go to the library.  While I might attend class online, I still have to find time to attend. I currently don’t even have time to read a book for pleasure anymore (I listen to them on tape instead).  I can’t get coverage at night to attend classes and during the day I work; shoot, during the evening and night I work because I get interrupted so much during the day, it takes me 12-hours to work 8 and 7 days to work 5.  So if I signed up for a course, I would flunk out through inability to attend or inability to complete assignments therefore, making that dream unrealistic.
My other desire is to write a book about my experiences as a caregiver.  I really enjoy writing and sharing with others and there might be 10 or 12 people out there who might find what I have to say interesting (those 10-12 include family, friends, and my church).  I know; however, since my husband is a writer, that writing a book takes a significant amount of time and getting an agent or publisher takes even more dedicated energy….not sure I have that available. I expect I would get frustrated wanting to get to my writing when so many other things were calling for my attention.  In fact, I actually started on a book on vacation last summer and da moment to look back at what I wrote since then.  Okay, then strike that goal.
Maybe the secret to this personal vision and goal business is to keep it simple.  So trying to be realistic, I need goals that only take a few steps to reach and limited time and which are in line with what I have to do each day.
Okay then, here are my goals for the future…

  • I want to have sufficient income and low enough debt to retire when I turn 66, the age at which social security says I can retire.
  • I want to be healthy enough that I can still enjoy my family and watch my grandchildren grow up.
  • I want to have been successful in being able to keep Lynn healthy enough that he is still here to share those good times with me.
  • I want to be able for us both to go back to church and participate in worship there among our church family.
  • I want us to both be well enough that on occasion we can leave this house for something other than a doctor’s appointment and actually be able to enjoy the time out without rushing to get back before he “crashes.”
  • I want to go out to dinner in a restaurant and order what looks good including dessert.
  • I want to attend a movie or a play without having to leave early or miss part of it to cath Lynn at least once.
  • I want to go shopping and get a new wedding ring to replace the one the doctor had to cut off my finger last year when I had an allergic reaction to fish oil.
  • I want to take my grandson to the park and play.

My pessimistic side tells me none of the above are likely to happen. My optimistic side says don’t give up hope.  I’ll go with optimism and keep my eye on the goal….Just maybe, I can make them happen.

Call If You Need Anything

Ever had this conversation?
“How’s (insert family member’s name here)? You know, that if you ever need anything, anything at all, that all you have to do is call….”
Really?  In my experience most of the time that is a polite way of letting me know the person cares and at that time, they certainly mean they would be willing to help, but they hope secretly that you’ll never actually call. Getting unsolicited offers of help is rare and asking for help is just hard.
When Lynn first got sick, I always declined offers of help.  For one thing, I didn’t want anyone to think I couldn’t handle it.  He was “my” responsibility and I didn’t want anyone saying I wasn’t doing well by him. The other reason though was that Lynn had still not come to terms with his condition and he didn’t want anyone to see him so dependent on others.  In fact, when we had visitors he would stage an appearance.  His clothing had to be reminiscent of the clothes he wore before his disability.  He only ate what he could manage himself.  He would slip in and out of the gathering discretely so people would not notice him needing special attention.  He would also push himself to talk more and do more to the point of exhaustion most of the time.
As I became more exhausted from caregiving 24/7, I began to realize I had to have some help but I was still reluctant to ask for any. What a blessing it was to have someone come and offer to do something specific for us!  Offering to come to stay with Lynn so I could go shopping for supplies, to cut the grass, to prepare meals, to help me get my car repaired–all these are things I need help with, and the offer to do them for me would certainly be received favorably by me.
I realize most people don’t know what to offer and are concerned about offending me by offering to do housework or other similar things.  Trust me, I’m not offended!  Anything that I can cross off my list is something I don’t have to worry about getting accomplished and is appreciated.  So, if you’re wondering how you can help someone who is a caregiver, here’s what I would recommend.
1.  Offer to do something specific.  Think about what is a task that takes a long time or may require special skills.  For me, now that summer is here, I need yard work done. I can’t go outside and mow the grass because I cannot hear Lynn call for me and if the phone is on vibration, I can’t feel it if I’m riding the mower.  I need the grass cut, weed eating is done, grass in the driveway sprayed, repairs done to the rotten rails on my front porch, trash taken to the dump (I live in a rural area where we actually take the trash to the dump ourselves), or similar things.  I finally hired a maid service so I no longer need my house cleaned but shampooing the carpet, helping to pack up things to take to Good Will, you know all those weekend projects that take a lot of time, would be suggestions on how people could help.
2. Offer to stay with Lynn for an extended period of time.  It’s very difficult to find someone to stay with Lynn for long periods so I can run errands on the weekend.  Most people work and have busy weekend schedules themselves so setting aside an extended period to be a companion to someone is not a favorite pastime.  Also, some are intimidated by his condition.  Since he cannot do much for himself, they’re afraid he will need something they can’t handle or that they will hurt him in some way.  I remind people that he’s not fragile.  I always take care of his medical needs before I leave.  Really, all they need to do is help him with food, typing (if they know how), drinks, and other comfort items.  He really doesn’t need anything special; just someone to be his hands and feet for a while.
Once the offer is made and accepted for a specific job, there are some caregiver etiquette rules I would recommend you observe.
1.  Treat this as a job.  If you can’t come, call in advance; give a specific time and be there at that time; be prepared to stay as long as you said you would and build in a little flexibility with the time so the caregiver won’t have to stop in the middle of shopping to rush home before the sitter has to leave.
2.  Realize you are there to help out; so help.  I’ve occasionally seen people offer to come help but when they get here, they sit back and do nothing. They are just here in the body only; not connected to the needs of the patient. If you’re here to help, ask the caregiver what they need and then jump up to help promptly if the patient requests help rather than letting the caregiver still do the work.
3.  Don’t tell the caregiver, “You just have to take care of yourself better.  You need to start exercising and getting more sleep.”  When someone says that to me, I want to say, “Don’t you think I would do that if I could?  There are only so many minutes in the day and if things have to get done, there is no one else here to do them so ‘taking care of me’ will just have to wait.” They mean well but they just don’t get it.  Telling a caregiver to do something more, even if it’s good advice, just means more for us to do and it takes, too, much energy to even think about that.
I have been very fortunate because Lynn and my family are wonderful about helping us out; plus we have our church family who comes through for us all the time; however, so many caregivers are not as fortunate as me.  It’s hard to ask for help and it’s even harder to relinquish our loved one into the care of someone else but it’s a blessing when we can get some relief; some time away for ourselves or to do the things that need to be done but can’t be when you’re caring for someone.  Thank the Lord above for the angels He sends to help.  I know I couldn’t have made it without them.

What is a Caregiver?

I’ve had the opportunity this week to read a few blogs from other caregivers and last week to attend a caregiver support group.  In hearing the stories of other caregivers, I started thinking about what it meant to be a caregiver.  There’s certainly the obvious answer, “to give care to someone periodically or full-time,” but there is more to the story; especially if you’re a full-time caregiver to someone who is totally dependent on you due to a mental or physical condition.  Here’s my take on it….
…first, there’s the physical commitment which takes on many faces…

  • If the person cannot “do for himself” then you become his muscles and nerves; not just his hands and feet. It is through your muscles, and therefore, your strength, that he moves to change positions, to find comfort, to alleviate pain, to participate in distractions, to have his needs of daily living met, to experience the joys and challenges of life as a participant and not as a spectator. It is through your nerve endings that his body is protected from water that is too hot, sharp objects that might damage skin, body temperatures that indicate infection, bandages that are too tight, food that is too cold to be enjoyable, and other potential discomforts or enjoyments that he is beyond the ability to change but must rely upon someone to care enough to notice them and adjust as necessary for his comfort and enjoyment.
  • The flip side of using those muscles and nerves to provide for care is that you have more aches and pains than you might otherwise have. Your muscles are often strained and in spasm from lifting a body that cannot provide any support for itself.  It’s true what they say about dead weight being heavier.  A limb that cannot be lifted by the owner is heavier to lift than one that the owner can provide assistance.  Sure it weighs the same but the effort required makes it heavier.  So you get up in the morning with sore muscles and periodic spasms.  A good exercise routine would probably help that but finding the time to commit to that is a challenge (especially if you’re like me and hate to exercise!)
  • Besides the daily physical requirement, there is also the fact that you commit to their care even when you need care yourself!  Gone are the days that you could lie in bed and rest if you had a cold or migraine.  Gone are the days that you can have a GI bug and just stay in the bathroom till you are well. You have to figure out how to get help for the person you’re caring for either in-between bouts of being ill or who to call to come rescue you both. Personally, I’m probably going to have surgery soon and will have to find full-time care for Lynn before I do so.  That’s bothers me more than the thought of the surgery!

 ….Then there’s the emotional commitment or impact….Though the physical aspect is draining, the emotional impact may be even more difficult to handle.

  • Again, there’s the emotional contributions of caregiving toward the “caree.”  Part of your role includes observing the emotional thermostat of the individual. Are they depressed?  Are they becoming angry and difficult to control?  Maybe they are afraid about the future or that you will decide not to look after them anymore so they cling to you or try to “guilt” you into staying.  Someone who is chronically ill often goes through the emotional stages similar to someone dying, “denial, bargaining, anger, depression, acceptance” with a lot of going back and forth between the stages as they encounter new issues.  Guess who has to help them through those stages?  The caregiver of course,who is also likely to be going through the same stages themselves.
  • The caregiver’s emotional response is often very difficult due to self-imposed guilt over having some of the emotions we have.  Too often we think that we are “bad” to be angry or resentful about being “stuck” in a situation. We don’t want to give ourselves permission to experience the negative feelings we have.  What happens though if you don’t allow yourself to express them is that they come out anyway in response to the one being cared for or in destructive ways to yourself.  I tend to overeat if I’m depressed and I become overly negative and critical toward Lynn. It’s important to acknowledge the feelings and allow them to be expressed but in a healthy way rather than in a destructive way.  Support groups and therapy help a lot with that as well as writing a blog : )
  • You also experience the effect of constantly having that person on your mind. You have to plan ahead for meeting their needs…do they have enough supplies, when is their medication refill due, are their bills being paid on time, are their clothes okay, are their meals being prepared correctly, who is going to cover for you when you can’t come by, who will take over if something happens to you….etc. etc. etc.  

…Besides emotional and physical commitments, you also become the other person’s “window to the world.”

  • You help them remember what day it is and to celebrate the special occasions on the calendar.  Often every day is just like the last so it’s difficult for them to keep straight the season or the holiday being experienced.
  • They may not read the news or watch it on TV so helping them keep up with current events may be a way to keep them connected (personally, I do not read them either so we could have had an alien invasion and I wouldn’t know about it till someone stopped by and told me about it.)
  • You are the one who takes them out into the real world.  I admire Patrick, who writes Caregivingly Yours.  He takes his wife Patti, who has MS and is fully dependent, on multiple excursions per week.  He keeps her stimulated with new places and entertains her with new advantages to help her keep involved in life, even though her MS Dementia would make it easy for him to say they did when they didn’t.  That’s try commitment to doing what’s good for someone when it would be so easy to let it go.

Then in addition to being a “caregiver” you add MS to the picture.  I know all chronic illnesses have their special challenges but since I deal with MS, I’ll describe that impact.   MS is unpredictable.  Since any nerve pathway could be affected by the myelin degeneration, ANYTHING could go wrong. What is working fine today might not work at all tomorrow.  Someone who is functioning well in the morning may not have the ability to do anything for themselves by afternoon. A simple cold can put them in bed for a month or more and lead to new exacerbations that have long-term limitations. A period of forgetfulness might mean fatigue or the beginnings of MS dementia.  And while all these symptoms create challenges, for the most part they do not shorten life expectancy so the accumulation of new challenges goes on and on and what’s lost is rarely regained.
There is no doubt that being a caregiver is a sacrifice of one’s self.  For me, I often feel like I am an extension of Lynn and at times, even lose myself in him so that I no longer exist.  When that starts to happen I have to work to separate myself from that place; otherwise, depression sets in and I am less effective at anything. 
Overall, I feel blessed to be a caregiver.  I receive a lot of rewards from being one.  It’s the hardest job I’ve ever had to do but it’s also the most rewarding because I’m very fortunate that the person I care for, cares for me, and we share the challenges together.  Plus, he’s very grateful and I have much support from our families and friends. 
But most of call, I’m blessed because God gave me the spirit of being a caregiver so I am doing what he has given me the talent to do.  Not everyone is so lucky and for them being a caregiver is a much greater challenge.  To them I say, “do the best you can but don’t expect to be perfect and don’t beat yourself up if you don’t like it.  You’re a blessing to the one you care for and that’s enough.”
So am I.

Reaching my Saturation Point – at least today

I guess I think that I can do whatever I sit my mind to and that my body and abilities will fall in line to make sure it happens.  So I strive to be the best manager, employee, mother, wife, caregiver, and friend, I can be. I want to take care of everyone’s needs and solve all their problems and still have energy afterwards to take care of our home and personal affairs.  Well, today I reached my saturation point and had a melt down…and so did Lynn….
If you follow my blog, you know that I offered to start an online “virtual” support group.  The plan was for those who were interested to call-in and we would have a conference call support group. I announced that if there was any interest, I would get it started.  I had a few interested responses so I created a Skype account and ordered a webcam.  The only problem is, I didn’t have time to learn how to use them properly.  I got everything loaded in advance but hadn’t had time to do a test drive, so, I was a little nervous about having the conference call today. 
What also didn’t help was that I was up till 2 a.m. after working till midnight on some reports for work and then getting Lynn and I ready for bed. I slept-in till 10 a.m., but I still should have had time plenty of time to see to the test before 2 p.m. when the call was scheduled.
Only it didn’t work out that way.
Each time I would sit down to pull up the program, Lynn would need something.  Then just as I was going to lay him down for  a nap, my son and his girlfriend came over to see him for father’s day. I haven’t seen either of them in a while and my son had been out of work for a week due to eye problems so I wanted to spend time with them.  While they were here, I put Lynn to bed for a short rest.  Suddenly I realized it was getting close to conference call time.  I put my conversation on hold with my son and went to get Lynn up.  Realizing I was most likely going to be late for the call, I sent an email to the other participant (I ended up with only one person interested in attending the conference call) to say I might be running late before going to get him up.  Sure enough, I was about 15 minutes late getting back to my computer after he finished with all his requests. By that point, the other party was not answering the call (I’m sure she had given up by then and if she’s reading this, I apologize for being so late!)
Since I could not get though on the call, I decided to test the connection and see how well the webcam worked.  I called to the computer in the back room where Lynn was and tried to talk to him.  The audio didn’t work well at all and he could not see the video.  So I tried to figure out how to make the equipment work properly for about thirty minutes, getting more and more frustrated as I did because the instruction book was so difficult to figure out.  Before long, I was ready to through the little camera away. 
Then Lynn needed me to turn off his camera because when he closed down Skype, the camera stayed on.  Well, it didn’t have an off button and I couldn’t find an exit menu for his software.  After spending ten minutes pushing more button, I finally decided to just unplug it.
By that point, I was in tears.
When I get upset, Lynn gets upset because he knows I’m so overwhelmed with all I have to do.  He tries to encourage me but all I want to do is cry.  So, I do, and I feel better, but that’s hard for him to understand. 
Then it’s Lynn’s turn to have a melt down…
Afterwards, I get him settled in his peddler, go fix some lunch, and go dig up some tomato plants that grow naturally near our house and transplant them into a pot on the deck.   I come inside and start to cook Lynn’s dinner when I hear something hit the floor hard in the bedroom.  Doesn’t sound big enough to be him but something obviously hit the floor.  I take off for his room and he’s heading my way in an obvious “mood.”  He looks like a thunder-cloud rolling in from the west. (Remember, I left him attached to his peddler which is obviously not attached now.) 
“What’s wrong?” I say.  He bellows back, “This !%##$%$% seat cushion is tearing up my @### and I have to get off it.”  Then he adds, as he rolls over some of the things he has knocked onto the floor, “I’m so #$%^ tired of being sick and feeling like %^&*(!” Then as he pushes his way to the bed so I can take him off the chair, he runs into the bed, knocks it off the blocks it sits on, and out rolls the knob to this wheelchair I knocked off earlier in the week and couldn’t find after searching for an hour! I yell at him, he growls, …. and then we fix the disrupted room …and our tension deflates.
It was bound to happen.  Being sick for long periods and being confined to being with someone who is sick for long periods takes a serious toll on one’s emotional stability.  Our relationship is like a see-saw.  If one is down and the other is up, we keep moving forward and it works. But when both of us are down, we’re not at a standstill, we’re broken.  Something has to give to take away some of the pressure pushing us down.  For me it was tears and for him it was banging into things and cussing. He needs a punching bag but he can’t punch so his chair and his mouth are his only outlets.  All that pent-up energy has to go somewhere!
So right now we both feel better.  We both “blew” in our own way  or got  our pent-up emotions “wrung out” of us by situations so we’re stable again….and everything’s good.
P.S.
Back to the conference call.  I’ll try it again on July 14 at 2 p.m. eastern standard time.  Send me your Skype contact information in advance if you want to be on the call.  I have some concerns about whether this is actually going to work or not.  I realized today that Lynn’s needs can’t be put on hold while I talk on the computer so being able to set aside a particular time might be a challenge.  Plus I’m a little concerned he might over hear my comments and I don’t want him to do that….Just some nagging concerns I’ve been having.  Let me know what you think, too, about it–honestly.
Till next week,
Donna

Live in the Moment

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 functional 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….
Donna

Virtual Support Group Instructions

Great News.  I have Skype set up and we can do conference calls, not group videos (though you could if you have that option in Skype, I just don’t have the bandwidth to do it).  Here’s what you need to do to participate:

  • Set up a Skype to Skype account.  It’s free.  You will need to have the capability to talk through your computer so a webcam with audio capability would be helpful.  Some laptops already have them installed so you’ll need to figure that out on your computer in advance.
  • Once you have your Skype account set up, you need to send me a contact request.  My Skype name is MSCaregiverDonna.  You can just click on “Add Contacts” and type that in as my Skype name.  That will send me a request to accept you as a contact, which of course I will. This has to be done in advance of the group meeting so I can add you to the conference call.
  • The day of the conference call, I’ll have already created a “group” for the session and I’ll send you a call when we’re ready to start.  You just answer the call and we get started.  Hopefully, it’s really that simple; however, I expect we may have a few glitches to work out initially so have patience.

Let’s set the date for our first support group meeting as June 16 and we’ll meet at 2 p.m. Eastern Standard Time.  That means you’ll need to convert the time for whatever time zone you are in.  I’m looking forward to meeting you all and having a real talk.

Virtual Support Group Update

I’m finding out that my internet, which is DSL, does not have enough bandwidth for me to do group video conferencing but I should be able to do group conference calls using Skype.  I’m still working out the details and when I have it figured out, I’ll be back to set up a specific time for our first virtual support group. 
I think we’re still on track for sometime in June. Based on the number of people who expressed interest, I think we’re looking at having a small group 5-8 to start with but if it works, I expect that could get larger.  Keep your fingers crossed that I figure out how to make this work. 
If anyone is interested in being a “co-leader” let me know.  There could be times I would not be able to host it and it would be nice to have someone else be the contact if that should occur.  Think about it and let me know.
Thanks
Donna

Virtual Support Group by Skype?

  When I first started this blog, my intent was to create a virtual support group; a place on-line that people, like me, who could not get away to attend support group meetings could get together on-line.  While this blog has allowed me to make many new friends and to gain support periodically from each of you, it doesn’t allow for that “personal” touch.  But I have an idea that might just work….let me know what you think.
Have you ever heard of Skype?  Skype is an online phone service that is free and allows you to both talk to and see whom you’re calling. Lynn uses it to speak to book clubs about his book and while it’s not always the best picture (depends on the equipment being used of course), it allows you to meet the people on the other end of the conversation.  Skype also offers an option for video conferencing which enables the subscriber to have multiple pictures of callers up at the same time.  There is a fee for this but it’s only $10/month if someone wanted that option.  See where I’m going with this?
If enough people were interested, we could have a virtual support group of caregivers.  From the location of our own home, we could reach out from across the country or even overseas to meet each other and share a “real time” conversation.  By getting together on-line in this manner we could attend a support group while still caring for our family members.  Many laptops now have webcam capabilities built in but I’ve looked into buying a webcam and you can get some good ones for less than $50.  Skype has some listed as five stars that are around $25. I’m very technology illiterate so I may be missing something that would not make this possible, but I don’t see why not? 
If you’re interested, I was thinking maybe once a month, on a Saturday afternoon, we could designate an hour to talk about whatever is going on that month.  I’m not a therapist or a counselor so this would not be a therapy session; just a group of caregivers who share a common challenge who get together to encourage and support one another.   I don’t know if it would work but I think God put this on my mind as an option to reach out to support people in a more personal way.  I would still do my blog but this would be a separate project.
So, what do you think?  If you’re interested, let me know.  If there’s enough interest, I’ll buy the subscription to Skype for group video conferencing.  I think you could call in and just view me if you only want the free subscription or if you also subscribed to video conferencing, you could see everyone else who calls in. I’m not sure about that though but it makes sense that you could.  So give it some thought and we’ll see if there’s any interest.  I’ll get back to you in about a month to let you know if there’s enough interest and when the first meeting would be.
Be “seeing” you soon?

Family of bloggers

When I first started blogging I had no idea what I was doing. I had heard about blogging but since I don’t have a lot of free time, I had not read many blogs.  Then while Lynn was in the hospital, I was talking to a nurse whose husband also had MS and we talked about how difficult it was to go to support groups.  If you’re the primary caregiver, getting away from home for very long is a major effort so belonging to a support group, while it might be beneficial, was just one more thing I would have to do without.
I tried Facebook at first to see if I could connect to other caregivers but to be honest, I’m just not that sociable.  I’m not a “one liner” kind of person (obviously as my prior blogs demonstrate) and just giving a “shout out” to someone doesn’t feel like we’re really connected. Therefore, I rarely even go to my Facebook account.
I realized I wanted to “talk” to people who could relate to what I’m living. I thought there might be others out there who were going through the same thing and who might want to also connect by responding to what I had shared.  That’s where the idea of a blog grew….and it’s exactly what I needed.
When I write this blog I feel like I’m actually talking to someone.  I don’t know most of you but if you’re reading this, it may be because you know someone with MS or you have had to care for someone who could not care for themselves, or you otherwise related in some way with something I’ve said.  That gives us a connection…a sense of community.  When I get comments back on something I’ve written, I feel understood and that I’m not alone in what I’m doing.  Blogging truly has become a virtual support group for me.
What’s really cool is that sometimes someone will actually send me an email and they share their story with me as well.  I feel like I have friends that really get it because they are really living it, too.  We’ve become a family of caregivers–people who care enough to give of themselves.  So thank you for being there for me.  It’s really very healing for me to share my life with you. 
PS, guess who has also started blogging?  Lynn. He has just done two so far but he saw how much I enjoyed it and is trying it himself; only his is about writing.  You can check his out at http://authorrisingtide.wordpress.com/