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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.

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.

Caregiver or Mom?

Happy Mother's Day
Happy Mother's Day (Photo credit: Wikipedia)

Having just celebrated a great Mother’s Day with my three children and their spouse’s, I couldn’t help but think that although my kids are all now grown, my mothering days are not over. I’m not referring to my status of “once a Mom, always a Mom,” which is certainly true but I’m talking about how being a caregiver is much the same as being a mother.
As a Mom, I did everything I could to keep my kids safe, happy, and well.  As a caregiver, I do the same.  Whenever I’m in the presence of my “child” (Lynn in this case) I watch for signs of danger.  Is he about to run over something with his wheelchair that might topple him over?  Has he allowed his food to sit out too long without being eaten so that I need to throw it out?   I even automatically throw my arm out in front of him when I have to stop quickly!  (He always asks me what I think that will do to protect him since he is bigger than I am but what can I say, it’s an automatic reflex.) I always reach out to protect him from whatever dangers I feel might be lurking around. 
I also protect him from “bullies,” others causing him harm in whatever fashion,  by overseeing his health care, going to bat for him in defending his rights, making sure all his “stuff” is secure and cared for.  I am his “mamma bear” protector in the same way that I was to my children.  When I feel a doctor or other healthcare worker is not paying attention to his needs or missing something that I think is important, I step in. If I think someone is trying to take advantage because of his condition, I’m ready to go to battle.  I am his protector….Just like I did for my kids….
When I was raising my kids, I liked to always see them happy. I do the same for Lynn (and have the same challenges and defeats as I did for my children.)  I try to make sure he has what he wants; that he has entertainment and fun in his life; that he feels comfortable and secure. I try to keep his fears at bay and lighten his load so that he doesn’t worry or become depressed.  I try to keep him “happy.”  Hum, okay, I admit, that’s not always true but it wasn’t always true for taking care of my kids either. There are days that I strike out with my sharp tongue that can be cut like a knife.  I don’t always protect his feelings and I often fight back when I think I’m being taken advantage of but overall, I’m very sensitive to his emotional needs.   I try to help pick up his spirits if sad. I comfort and encourage him when he’s down and discouraged.  I bolster his ego and am his cheerleader.  I’m the proud Mama clapping and shouting for joy when he gets good news about his book promotions or gets a good book review.  I glow with pride when I hear him sing knowing that God gave him that voice to praise him (and praise him, he does).  All these emotions I have for him and give to him; I had and gave to my children as their mother.
Another goal I have is that I strive to keep him well.  Now as a caregiver, I seem to spend most, if not all of my time, in this category.  What I feed him, how I care for his physical needs, where I step in to ensure he has a balanced life; all these actions are done with the goal of keeping him well.  I make sure his food provides the best nutrient balance to fight MS.  I assist with his physical therapy to keep his muscles, respirations, and circulatory system in the best shape possible.  I see that his hygiene is kept up and watch for skin breakdown or discoloration that could indicate a problem.  I try to make sure he rests when he shows signs of being tired and I attempt to keep his life a balance of stress and joy. All this is done for his well-being.  All of this I did for my children and their well-being also.
So being a caregiver is essentially the same job description I had as a mother, EXCEPT as a Mom, I knew I was “growing up” my child to go out on their own.  I was giving them the best start they could have in life and laying a foundation for them to enter their adult life with health, knowledge, abilities, and emotional strength so that they, in turn, could raise their own families and be successful in their own right. 
Not so as a caregiver. 
What I do each day as a caregiver is not to prepare my child for a future to go out on their own but instead to continue in this life at my side and under my care for as long as they live or as long as I am physically and mentally able to do so.  He will not “leave the nest.” If he leaves its for a worse situation; not a better one (except personally, I have a strong belief that heaven is an awesome place and much better than earth could ever be; so in reality, it would be a better place for him; just not the dying part). For us, right now, there is not an end in sight, for which I am fortunate because as a caregiver to someone with an incurable condition, an end means THE END and is not a happy goal to achieve.
So as I reflect on Mother’s Day, I realize, I have my three children, my three children-in-law, my grandchild, and my spouse-child.  I have a house of children and in my opinion there is no better (or harder) job in life than being a Mom. 
Thank you, God for blessing me with my children.