Friday, April 13, 2012

A MS caregivers heart of gold~

The other day I read a blog from a fellow MS'er. She wrote about an tragic event that was in the news this week. A worn out, elderly husband, who had been taken care of his wife stricken with MS for years, finally snapped while watching the nurse change his wife's diaper. He ordered the nurse out of the house, and ended up shooting his wife and then killing himself.

Wow, the realization of what happened to them hit me like a ton of bricks. With me living with MS for over 14 years now (since my dx in '98, altho I know I had it for years and didn't know it) and having watched my amazing husband do his balancing act of attending to my needs and working a full time job, it's a natural thing to put yourself into that situation and wonder, so, could that happen to us in a few years?

God, I hope not. There, but for the Grace of God, go we. We hear about these types of things happening every now and then, where one spouse will kill the other one who is suffering and then take their own life. I've always thought had sad it is, but never given it too much thought because I know how messy this life can get. But I guess because this was an MS caregiver that snapped, it made me sit up and pay attention.

Tending to the needs of someone with a debilitating, chronic and progressive illness is not for the faint of heart. My dear husband has been with me all the way. We've been married for almost 34 years next month. I was diagnosed back in 1998, but I had ongoing medical challenges for years, but it wasn't nailed down to MS until I had a massive attack in December 1997. After a month of having every test known to man, and going to different doctors in our hometown of Sarasota and then Tampa, finally we heard the verdict: MS.

It must take mounds of patience to live with someone who has to deal with disease like MS each day. My husband has handled my physical, emotional and psychological needs and I know it hasn't been easy for him. He has provided me with everything I need, without complaint. I'm the luckiest gal in the world. He even bought me a vacation house in NC to get me out of this intense FL heat 6 years ago. My comfort has been his #1 priority and I will never, ever be able to pay him back for all the love and care he's given me, especially these past 14 years.

                                                              View from the deck of our house in NC.
                                                             It is glorious and cool in those mountains!

                                                                   Hubby Steve and I at WalkMS 2007

MS is a tricky disease. It affects your mind, your body and your emotions. I've had physical problems and tremendous cognitive challenges too over these years. There are some good days and there are some bad days. I have RRMS, which is what most MS'ers get, so in the beginning I was able to work and live a fairly normal life. But slowly, even with the drugs, the disease takes a piece of you; day by day, eating away at who you used to be. You go from being normal just like most other folks, to getting a" new normal" to live by. How you adapt to that new normal will determine whether you continue to thrive in spite of the disease, or simply survive.

But through all my challenges and triumphs (like CCSVI, the latest treatment that has helped my symptoms greatly) of living with MS; my dear caregiver, my love, my husband has been right by my side. He could have left, as a matter of fact, many spouses do leave after their partner gets a diagnosis like MS. They just don't want to go there. They aren't willing to sacrifice their lives to help take care of the needs of someone else. As I said, it's takes a tremendous amount of courage and tenacity to stay in for the fight and it is definitely NOT for the faint of heart. It takes guts. That is something my dear husband has always had plenty of: Guts.
There had been some comments in that article about whether that man actually loved his wife and whether or not he was just looking for a way out because he was miserable himself. All of their friends and family said he was totally devoted to her and that she was his life. The article said he had just built a ramp on their porch so he could wheel her outside to get some sunshine each day. How could he go from doing something so nice, to killing her and then himself?

There is no doubt in my mind that he loved her with all his heart and soul, and probably couldn't bear to see her suffer one more minute. He didn't want to live without her and therefore he killed himself too. He probably couldn't take it anymore himself and knew she wouldn't be happy in a nursing home or assisted living facility. Maybe they didn't have the funds for it. There could have been a thousands things on his mind when he pulled that trigger. We're all human and we all have our breaking points. Unfortunately for this couple dealing with life and MS and their families, it was a sad, sad ending for all of them.

                                                Steve helping out at the CCSVI Walk-n-Roll March 2011

I know many husbands and wives who are or have been caregivers for their loved ones. Caregivers come in all kinds of forms, shapes and sizes. They deal with spouses, elderly mothers and fathers and even sick children. You will see them at doctors offices, at the mall, in the grocery stores. The difference is for most of them, not all, but most; it's usually a short lived time span for their responsbilities. Their loved one may be ill for 3-5 years before they pass on.

But, with an MS caregiver, it's a life-long commitment. With that obligation comes the balancing act of keeping themselves sane, and trying to keep a smile on their face for their loved one; day after day after day. Plus add on the actual demands of the caregiver job; cooking and cleaning, shopping, housekeeping, trips to the doctor and a thousand other demands that weigh on bodies and their minds. Is my loved one comfortable? Are they in pain? Are they on the right medication? And on and on it goes.

My husband is the most unselfish person I know. He's had to dedicate so much of his personal time to my well-being. I love him for it. It hasn't been easy for either of us, or our kids. MS is really a family disease, it affects everyone that lives in the house, in one way or the other. There have been plenty of fights and crying, over the years. I'm a pretty easy gal to get along with most of the time, but I can also be very demanding, uncompromising B I _ C H when I want to. Can't we all, from time to time?

When I think my husband's tremendous sacrifice on my behalf, this verse comes to mind about living life with a servants heart. I truly believe he does this each day:

"Do nothing from rivalry or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. Have this mind among yourselves, which is yours in Christ Jesus."   Philippians 2:3-5

In conclusion, I feel nothing but empathy for that poor man who was so desperate that felt he needed to kill his wife and then take his own. As I said before...there but for the Grace of God, go US.

If you have MS or any chronic condition that means you need help every day and are lucky enough to have a wife or husband that is by your side, you know exactly how much it takes out of them. Take the time to say thanks to them and thanks to God for their sacrifice on your behalf. Believe me, in spite of your sickness and your daily challenges with MS --Your life, my friend, is truly blessed.

My verse for today is above in red.

My prayer for today:

Dear Lord:

I pray for my sweet husband. I pray that you will continue to give him the strength he needs to help me and continue to take care of himself. I pray Lord that you will give him patience and wisdom in how to deal with all my challenges and his. I pray that I will consider his needs and help him in anyway I possibly can. Thank you Jesus for this wonderful, devoted and loving husband. Watch over and protect him, always.

In Jesus name I pray,
Amen and Amen

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