Thursday, January 29, 2009

Hurting, in more ways than one....

It's nothing traumatic or dangerous. It's not extreme....but for the past two weeks, my Dear Hubby has not felt well. He can't really put a finger on it, exactly. He is having a hard time turning and moving in bed. He can't move his legs on their own, but I made some leg lifters for him quite a while back and he's been able to use those, up until now. His legs are aching more and more, he's getting weaker and some days, it's just better for him to rest in bed.

I hate times like this. Times when the one you are caring for needs help and while you do what you can, it doesn't alleviate their discomfort. My husband does not complain....but it's hard to hear him say time and time again, "I don't know honey, I just don't feel good." "I just can't get comfortable." My heart hurts for him and I just wish I could wave a magic wand and make him feel better.

If you have a few moments, please pray for him and for us. That he will be able to rest comfortably and that his legs will stop aching. And, pray for me, that I will have the energy and strength to do what needs to be done each day.

Tuesday, January 27, 2009

True happiness is not attained
through self-gratification,
but through fidelity
to a worthy purpose.

Helen Keller

Monday, January 26, 2009

I will praise thee, O LORD,
with my whole heart;
I will shew forth all
thy marvellous works.
I will be glad and rejoice in thee:
I will sing praise to thy name,
O thou most High.

Psalm 9:1,2

Friday, January 23, 2009

What is so difficult about chronic illness??

I've been thinking again. Uh usually gets me into trouble. LOL But, here goes anyway.

Having a disease that is chronic and progressive brings to my mind one word. Change. Each morning is a new day in many different ways.

The word "chronic" means marked by long duration, and often by slowly progressing seriousness, always present, constantly vexing, weakening or troubling. Hmm....that definitely sounds like MS.

The word "progressive" means increasing in extent or severity. Yep, that's MS.

The thing is, each day you awake you really aren't sure what you are going to be able to do that day. Each and everyday, you wake knowing that you have an illness that isn't going away. It's not a cold, the flu or a virus that will run it's course, and tomorrow you'll be feeling better, back to your old self. Nope, this awful fatigue, these aches and pains, the blurry vision, the partial paralysis, the spasticity, the weakness, will all be here tomorrow.

The other thing is that not only will it be here tomorrow, it may be worse. Sure, it might let up just a bit in one area or another, but it seems that another area will be worse. And each day you wake, something is going to be more difficult to do.

These changes take place slowly and sometimes they are almost unnoticeable. And, the way you adjust is almost unnoticeable.

One day, about a year ago, Dear Hubby and I were talking about his illness and the resulting care that was required. I had noticed that one night, when it came time to go to bed, he asked for me to help lift his legs into bed for him. I did it automatically without thinking, and he settled in for the night. From that day on, I helped lift his legs into the bed, after he transferred from his wheelchair and sat on the side of the bed. No big deal...

Fast forward a few months, and Dear Hubby was needing help transferring. He was no longer able to lift himself from his wheel chair to the side of the bed. big deal. Transfer, lift his legs, he gets settled, we go to sleep.

Fast forward a few months more. I transfer Dear Hubby, lift his legs, he begins to get settled, and then says, "Honey, I'm sorry, can you help roll me over?" Sure, no big deal.....The next night, I transfer, lift his legs, get him into the prone position, roll him over. See, no big deal.

And, so it continues. Now, I transfer, lift his legs, lay him down, roll him over, pull him to the side of the bed, pull his legs up, put a pillow between his knees, shift his pillow down under his neck, pull up the covers, tuck him in, kiss him goodnight, park the wheelchair out of the way, turn out the light, get into bed, turn out my light. Where I once slept through the night, I am now awakened periodically to help adjust him in bed in the middle of the night. No big deal.

Now, imagine this same scenario in every area of life. Bedtime, baths, restroom, eating, etc. Each and every area of his life now requires care. Even when he is lying in bed resting, he needs help. You know how it is when you lay down to rest. You turn, you raise your left leg, you put it down, you shift your weight from one hip to the other, etc. husband's disease is chronic and progressive. And, you know what? My caregiving is too. Chronic in that each and every moment it is here, it will last a long time, always present. My caregiving is progressive in that each day I will need to do more.

And, you know, it's ok. I'm fine with that. I signed up for this when I vowed "in sickness and in health". Maybe I didn't REALLY understand at the time what that would mean, but the words are still real and the committment is the same.

I've also seen the way things have changed in my personal life too. For example, I'm a quilter. I have met with several ladies from church once a month for years. We get together, have a devotional, sew, have a meal, show our projects, ask advice, laugh, cry, giggle, and such. I've enjoyed doing this for years. The beginning of the year, I realized that I really can no longer attend our regular quilt bee. I can't take one day where I am gone for 6-8 hours and spend that time with my quilting buddies.

Does that make me sad? Sure, it does. But honestly, considering all the things Dear Hubby and I have lost, it's not that bad. Really. I can't grieve over every loss, or Dear Hubby and I would spend each morning crying in our milk. Each day brings loss.

I can no longer make 6 hour lunch dates regularly. Each year, when Quilt Show rolls around, I assume I won't be able to attend. Because I'd rather be pleasantly surprised that bitterly disappointed.

I'm learning to deal with change. I don't have time to sit and visit like I once did. I can e-mail rather easily because I do that between responsibilities. I can take time to write on my blogs, because Blogger saves my work as I go and I can take all day to write a post. I can enjoy short 2 hour visits from friends periodically. But life has changed.

Where once we had people over frequently and they were apt to stay until the wee hours of the morning, we can't do that any more. Dear Hubby tires having people in our home. Even having our friend D stay with hubby or my MIL here, tires Hubby out and he needs time to recoop afterwards. It throws him into a fit of fatigue where he can do nothing but rest the next day.

Dear Hubby has seen some really awful changes in his abilities and in his own way, he mourns those losses. There are times that I hear him struggling to do something he's been doing for all his life, and I hear him mutter, "dadgum". Yeah, that's as bad as his language gets....then I hear, "Honey, I'm sorry, can you come here. I can't....... will you help me?" And so he looses another bit of freedom and I gain a bit more responsibility.

We work together through our frustration and find what works for him and for me. We have discussions like, "You need to do it this way" and I say, "Well, I'm doing it, so you need to let me do it the way that works for me" and he says, "well, that hurts me, so you can do that" and I say, "ok, is that better?" and he responds, "yeah, that's great." We're learning to work together, all day, everyday to make his life and mine better.

Yeah, sometimes we're gripey and complain, but honestly, we're closer today than we've ever been. (Which is a miracle when statistics show that 80% of marriages faced with chronic illness end in divorce.) We giggle and laugh, we cry and whine together. We make fun of ourselves and each other, and mainly we stick together through thick and thin, through heartache and pain, joys and laughter.

We've grown in our faith, we understand scriptures we never did before. We're learning to walk in grace and faith. We're learning to "come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." Hebrews 4:16 We are seeing our Father in heaven in ways we never have before. We are learning to trust that God is working even when we cannot see His hand. We are trusting that "all things work together for good to them that love God, to them who are the called according to his purpose." Romans 8:28

And we are finding that the scriptures are true:

"Two are better than one;
because they
have a good
reward for their labour.

For if they fall,
the one will lift up his fellow:

but woe to him that
is alone when he falleth;

for he hath not another
to help him up.

Again, if two lie together,
then they have heat:

but how can one
be warm alone?

And if one prevail
against him,

two shall withstand him; and
a threefold cord is not quickly broken

Ecclesiastes 4:9-12

Wednesday, January 21, 2009

The "C" Word

Please pray for two dear friends who are battling cancer.

The first friend is one I met through blogging. J loves the Lord and has become a fast friend. J will be having surgery on the 26th of this month. Please pray for J's spouse who will begin care giving. Pray for grace, peace and comfort for them both, as well as their family.

The other one is a friend our family has known for 14 years. The entire family are sweet, sweet Christians that each member of my family has grown to love. D will be having surgery on the 10th. Please pray for D's spouse, who is continuing care giving. Pray for strength, peace, and wisdom. D's spouse has been dealing with all this for quite a while now. And, please pray that D will recover quickly.

Thanks so much Dear Caregiving Friends.

Monday, January 19, 2009

Never bear more than one trouble at a time.
Some people bear three kinds -
all they have had,
all they have now,
and all they expect to have.

Edward Everett Hale

Friday, January 16, 2009

Overcoming Part 3

Overcoming Part 1 discussed the importance of encouraging yourself through God's word, and Part 2 discussed the importance of music in our lives as a way of keeping our hearts encouraged.

This blog post, Overcoming Part 3, I would like to discuss "thinking". Our thinking is so important to the health of our hearts, minds, emotions and spiritual lives. The Lord gave us a mind with which we are to think the thoughts He thinks. We have the mind of Christ, I Corinthians 2:16. The scriptures tell us that, "For as he thinketh in his heart, so is he:" Proverbs 23:7a

When we were lost and without Christ, we were under the bondage of "wrong thinking". We thought that the way to happiness was in pursuing our own desires. We thought that if we did everything we wanted to do, everything we dreamed of, we would finally find happiness and fulfillment. Once we came to Christ we began to see that the only way to find our life was to loose it (Matthew 10:39). The only way to have fulfillment was to give our lives fully to the cause of Christ.

I've struggled with thinking sad and depressing thoughts. It's so easy to get sucked into. I mean, seriously, when you look at this caregiving can be depressing. I'm not always good at keeping my thoughts under control.

Here are some areas of thinking that I've had to bring under control.

1. I can't do this another month, week, day, minute. That's right, I really can't, but the Lord can. After all, aren't we called to full and complete dependence on Him? He doesn't call us to more than we can bear. But, He can and does, stretch us to the very limits though. I've seen it happen time and again in my own life. I have learned that when those thoughts hit me, as they surely will, I must take time out. Time away from the difficult situation. I may take 30 minutes at my sewing machine, 20 minutes to read, 10 minutes on the back porch to breathe deeply or 5 minutes alone in my closet....literally. Sometimes a short break is not enough, and I need a few hours. I make arrangements for breaks. And on the days that are really hard, I just tell myself, "You can make it to lunch. Then you can rest." Or "You can make it for another 30 minutes." Sometimes, you have break the day into manageable bits. On those days, a nap certainly wouldn't hurt!

2. No one understands. Sure, no one really, truly gets it. I mean, after all, the illnesses are different, the disabilities are different, the needs and amounts of time and work are different. But, what I have found is that there are some who do get the general idea of how I feel and what I am experiencing. I find myself gravitating toward those who live a life similar to mine. Finding that there are others who get what I am experiencing and live it each day, helps me to know that if they can survive, surely I will too.

3. I can't. I can't do this, I can't do that. Limits, limits, limits. But, honestly, I can do the things that are really important to me. I may have to limit my activities, but if I choose wisely, I can do some of the things I've wanted to do. The help that I have in my home weekly, 4 hours, 2 times a week, have allowed me to get my "regular errands" done. Grocery, hair appointments, dental appointments, post office, etc. But, in order to do additional things like taking our youngest child to the Rodeo, I've had to ask for additional help from my children. I've found that I can ask friends to drop something in the mail box, run by the bank, pick up 3-4 items from the grocery, etc. so that I can use some of my time off for a fun outing. I'm still working on this....and I'm learning to prioritize. Not easy for any of us, right? A friend once shared with me that we change the things we can....nothing wrong with that. I mean, if there is something particular that is bothering you, causing stifling limits that you can't imagine living with, and you can change them, then do. Other limits we will just have to learn to accept God's grace for.

4. I want my old life back. Ok, the truth is, the is the one that I have had the hardest time controlling. Why is that? Because, I had an AWESOME life. My kids were great, my husband was great, I loved my role as wife and mother, I enjoyed home schooling....I was comfortable. Our family went on vacations together, we visited family, we enjoyed friendships and times together. Life was good. But, you know, sometimes things change. I can't understand why God chooses some to suffer illnesses that change everything and chooses some to continue their lives as they had always planned. You know, I won't ever have my old life back....and that is sad. Thankfully, the Lord does give us memories to carry with us. My husband and I frequently talk about the "old days" before the diagnosis that changed our lives. I am trying to learn to live the life the Lord has chosen for me. I'm not trying to be depressing, but knowing that the only things that you can share and experience with your husband will have to take place in your home, or maybe even from his hospital bed. It is limiting. But, on the other hand, we are both learning to enjoy the simple things in life. A shared conversation late at night, an old black and white movie that leaves us both in tears, a paragraph from a book, a belly laugh over a funny slip of the lip or a funny clip from YouTube.

I want to learn to live a life of gratitude. I do have much to be grateful for. I have a family that loves me, a husband that loves and appreciates me. We are still able to communicate in many ways. I have a church family who cares and shows their love for us in so many ways. We have a roof above our heads, food in the pantry and provision each day for our needs. We have a Heavenly Father who sees and knows us. A Father in heaven who gives grace for the moment. I am grateful that I am healthy enough to serve my husband and family.

My thinking is not always right, but I know that the Lord is faithful to continue teaching me the lessons He wants me to learn. This doesn't mean that each day I live will be filled with nothing but gratitude....but that is what I am praying for. In those times of deepest sadness, and difficult times, I pray that the Lord will open the eyes of my heart to reasons for gratefulness.

My prayer is that my heart's mind will focus on the things of Christ in my times of trial and testing...on Christ Himself.

Finally, brethren, whatsoever things are true,
whatsoever things are honest,
whatsoever things are just,
whatsoever things are pure,
whatsoever things are lovely,
whatsoever things are of good report;
if there be any virtue,
and if there be any praise,
think on these things.

Philippians 4:8

Tuesday, January 13, 2009

Overcoming Part 2

My last post talked about strengthening and encouraging your heart in the Lord. I'd like to continue this thought with another way in which we can encourage our heart.

I'd like to remind us of a well known story found in I Samuel where David played his harp to refresh King Saul. The scripture speaks of Saul having an evil spirit. I'm sure Biblical scholars could argue and debate the meaning of the word evil, but my study has shown that the word evil could have several meanings.

Could it be that Saul was dealing with a disagreeable, sad, unhappy, hurtful, and distressful spirit? Feeling unsettled, unhappy, and distressed, Saul called for David to play music for him. The scriptures tell us that the evil spirit departed from Saul. Now, I really am not a Bible scholar and have not studied this story out thoroughly, but from my experience, music really does play a vital role in the way we relate to our Father in heaven. I do know that music will be heaven. Revelation 5 tells us that the saints in heaven will sing a new song. I can not wait until that day.

For quite a while, I had cut music almost completely out of my life. One of the problems that my husband experiences with his MS is that noise bothers him. Regardless of whether this noise is "good noise", like music or family chatting, listening to sermons or background noise. It overwhelms his system and causes him to tire quickly. In order to accommodate his weakness in this area, our family has tried to control the level of noise in our home. Including cutting out loud discussions, endless chatter and even music, unless listened through head phones. It's not easy, because by nature we are a "loud" family!! LOL

I began to realize that music really did minister to my soul, especially good Christian music. I decided that whenever I was in the other room, away from my husband, doing my tasks throughout the day, I would make a point to listen to music. I started playing it while I sat at the sewing machine, while I worked in the kitchen, when I was alone in the vehicles, etc. And, it was like a balm to my soul.

I began to listen to the words of the great music I was being exposed to and found my heart being reminded of God's goodness, His greatness, His faithfulness and steadfastness. Now, I am not saying that everything out there with the label "Christian music" will have this affect, but I also refuse to try to tell others what to listen to. Just like every other area of our life, we must listen to the Lord's direction.

Find ways to nourish your soul with music. When we evacuated last year, late summer, we took up residence in a hotel in Ft. Worth Texas. My daughter and I were able to take one evening and spend it listening to a live concert of The Singing Men of Texas. I sat and cried as I listened to approximately 250 male voices singing praises to the Lord. I can't even begin to describe the spiritual reaction I had that night. It had been a very stressful time and sitting there hearing my Father in heaven praised and glorified brought with it a deep sense of gratitude and love for Him.

Another time, a small group of young adults came to our home and sang for us. My husband and I sat, listening, with tears streaming down our face as they sang, "Untitled Hymn"and several other songs. The words were like a medicine to my hurting heart. What a ministry it was to us.

Now, in my home, I have found a way to listen to music that ministers to my heart. I found an online radio station where I have some control over what I can hear. I typed in the name of an artist that I remembered listening to many years ago and one whose songs are sung in our church by a godly man with a wonderful baritone voice. Other songs come up and I can click whether I like them or not, and the program continues presenting me with songs to choose from. I've been able to find new artists and new songs that I've never heard before.

One reason I am not going to mention artists that I am listening to is that honestly, I do not want to be judged. There are some who will say, "This artist is this, does this, acts this way, etc." I am learning to hear the voice of my Savior as He directs me. I am learning to understand that God's voice will tell me no when I don't need to listen and if I don't have that, I listen with freedom. I choose to listen to only Christian music.

Perhaps you have CDs that you can listen to. I do. My children and several of their friends at church made a CD and I listen to that. I also have other young adults that have made wonderful CDs with singing, piano and violin music. These are the ones I listen to in the vehicle.

The main thing is that we find ways to nourish and refresh our souls. Make sure that music is soothing to your heart, edifies the child of God to follow Christ and exalts the name of Jesus. You will see that it will be like a medicine to your heart.

Monday, January 12, 2009

Overcoming Part 1

Until you've walked the road of caregiving, you can't begin to understand the depth of emotion that you can experience. It's like taking everything you've ever known and throwing it up in the air. Fifty percent of it will still apply, and the rest, while the truth will remain the same, will have to be reapplied differently.

I'm learning more and more about myself through this difficult time. I've learned that I AM NOT like everyone else. I have a different past, a different personality, a different spiritual gift, a different bent, a different situation, and I will have a different course of personal healing. None of us can be expected to apply Step 1, Step 2 and Step 3 and be done.

These are deep waters through which we pass. These are difficult times. These are trials and testings. These are the things that reveal who we are. These are times that try the soul and test your faith. These are times that strip us of our independence and cause us to fall on Jesus. These are the times that remove our judgmental spirit and teach us to love and accept people just as they are. These are the situations where we say, "I can't take another step" or "I can't do this." These things are beyond ourselves.

It's difficult to "Just Deal With It".

I have struggled in the past with depression. I won't go into all that lead me down that path, but let me say right here, it was not a lack of faith, a turning of my back on God, or a self-centered focus. It was many things, but I have never FOR ONE MOMENT, doubted my Father in Heaven. I have questioned whether this was too much for me to bear. I wondered where was the way of escape?

There hath no temptation taken you
but such as is common to man:
but God is faithful, who will not
suffer you to be tempted above
that ye are able; but will with
the temptation also make a way
to escape, that ye may be able
to bear it.
I Corinthians 10:13 .

If you are dealing with deep sadness and depression, may I suggest that you discuss this with your doctor? Please call a professional counselor. Get some help. It is nothing to be ashamed of and nothing to cover up and try to "deal with" yourself.

If, on the other hand, you are dealing with sadness and just struggling with feelings of fear, know that you can strengthen your heart in the Lord.

Focus on scriptures that will strengthen and encourage your heart.

Luke 18:27 "And he said, The things which are impossible with men are possible with God."

Deuteronomy 31:6 " Be strong and of a good courage, fear not, nor be afraid of them: for the LORD thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee."

James 1:2-6 "My brethren, count it all joy when ye fall into divers temptations; Knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing. If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him. But let him ask in faith, nothing wavering. For he that wavereth is like a wave of the sea driven with the wind and tossed."

Romans 8:31 and 32 "What shall we then say to these things? If God be for us, who can be against us? He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things?"

2 Timothy 2:1 "Thou therefore, my son, be strong in the grace that is in Christ Jesus."

Colossians 3:2-4 "Set your affection on things above, not on things on the earth. For ye are dead, and your life is hid with Christ in God. When Christ, who is our life, shall appear, then shall ye also appear with him in glory"

Colossians 3:23 and 24 "And whatsoever ye do, do it heartily, as to the Lord, and not unto men; Knowing that of the Lord ye shall receive the reward of the inheritance: for ye serve the Lord Christ."

Mark 9:23 "Jesus said unto him, If thou canst believe, all things are possible to him that believeth."

John 16:33 "These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world."

Romans 8:18 "For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us."

Joshua 1:9 "Have not I commanded thee? Be strong and of good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with thee whithersoever thou goest."

Romans 8:37-39 "Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord."

Psalm 27:13 and 14 "I had fainted, unless I had believed to see the goodness of the LORD in the land of the living. Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD."

Psalm 31:2 and 3 "Bow down thine ear to me; deliver me speedily: be thou my strong rock, for an house of defence to save me. For thou art my rock and my fortress; therefore for thy name's sake lead me, and guide me."

Rom 8:28 "And we know that all things work together for good to them that love God, to them who are the called according to his purpose."

Mic 7:8 "Rejoice not against me, O mine enemy: when I fall, I shall arise; when I sit in darkness, the LORD shall be a light unto me."

Phil 4:13 "I can do all things through Christ who strengtheneth me."

1 John 4:4 "Ye are of God, little children, and have overcome them: because greater is he that is in you, than he that is in the world."

Philippians 1:6 "Being confident of this very thing, that he which hath begun a good work in you will perform it until the day of Jesus Christ:"

II Timothy 4:7, 8 "I have fought a good fight, I have finished my course, I have kept the faith: Henceforth there is laid up for me a crown of righteousness, which the Lord, the righteous judge, shall give me at that day: and not to me only, but unto all them also that love his appearing."

These are just a few of the scriptures that I have found over the course of many years of searching for an encouraging word in the Bible. God's Word is our source of truth, encouragement, wisdom, counsel, and guidance. I encourage you to stay in The Word as you walk this path.

Friday, January 9, 2009

Quote by Katherine Hepburn

Love has nothing to do with
what you are expecting to get
— only what you are expecting to give —
which is everything. What you will
receive in return varies.
But it really has no connection
with what you give.
You give because you love
and cannot help giving.

I certainly can't agree with every aspect of Katherine Hepburn's life, but I certainly do agree with this quote.

We are caregivers. We do love our care recipients, and we know that regardless of the response we get, we will love and care for them. Because, after all, love is not what you get, it is what you give.

I'm so grateful that today, my husband can and does communicate his gratefulness and thankfulness for the things I do each day to care for him. But what do you do when the person receiving care either cannot or, even worse, will not express gratitude? What if they are a grouch? What if they are mean, harsh, and impatient?

I'll be honest, I don't know how I would respond day after day if I were in that place. But what I do know is that the Bible gives us some instruction and practical guidelines on how to walk this walk.

Here are some scriptures that we can use to encourage ourselves in the Lord. The Lord can do his work, without my preaching this truth. I know that the best lessons I've learned are those where I simply read the scripture and listened to the voice of the Lord.

“Bless them which persecute you: bless, and curse not” (Romans 12:14).

“Charity suffereth long, and is kind…” (1 Corinthians 13:4).

I must admit, I cannot love the way I should apart from a personal relationship with Jesus Christ. He will love through us and give us the grace to help in time of need.

“Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need” (Hebrews 4:16).

“And be ye kind one to another, tenderhearted, forgiving one another, even as God for Christ's sake hath forgiven you” (Ephesians 4:32).

My Dear Hubby and I recently had a discussion about this. I asked him, "What do you do in this case? How would you handle that?" I asked him to think it over and give me some scriptures that would address this. The above scriptures are ones he shared with me. Thanks Sweetie.

Wednesday, January 7, 2009

This is my commandment,
That ye love one another,
as I have loved you.
Greater love hath no man
than this, that a man
lay down his life for his friends.

John 15:12 and 13

Tuesday, January 6, 2009

Love and Respect

We all know what love is....or at least we think we do. Years ago, Dear Hubby and I went to a conference all about love. It was called, "Love is a Decision". And, that's what I think love is...a decision. I chose my husband to be a part of me. I decided that he would be the one and only in my life. I chose him to be at the top of my priority list, right under my commitment and love for my God. There is never a day that I question, "Do I love my husband?" The decision was made, never to be rethought.

Fortunately for us, not only is the decision there, but usually the emotion of love is there too. I FEEL love for my husband. Yes, he irritates me at times, and I have a pretty good idea that I frustrate him too....but we both "feel love" for one another. Some days, I look into his eyes and my heart is flooded with love for this man. I would give my life for his. Sometimes I even wish that I could take his disease from him and carry that burden for him. I truly, deeply love my husband.

I also respect my husband. Back when we lived the traditional roles of husband and wife, that respect translated in the way I related to my husband. I asked questions, listened to his answers and then did my best to please him and follow his wishes. I tried to "obey" him as I promised in my vows. Not in the sense of "blind obedience", but I tried to place his plans and wishes above my own. The special thing about our relationship? He tried to do the same for me. We had mutual giving. He wanted to please me and I wanted to please him. Today, some things are different.

My husband no longer has the ability to make all the decisions in our lives. There are times that I have to make decisions that go against his wishes. I hate that. I hate having to decide when and which wishes to follow. I've had to learn to say no. There are times when I physically or mentally cannot take another step. There are times that I must leave my home to get a break even though I know he wants me home with him.

Today, my respect can be shown to my Dear Husband in the way I treat him. I still try to do things that please him, but with our situation, there are times that I can't. I can't be here with him 24/7, although that is what he would prefer. I can't always get him exactly what he needs. Sometimes, I have to ask him to wait while I finish something, whereas before the illness struck, I dropped everything and ran. Now, it's just me doing the things that have to be done, and sometimes he must wait.

Respect is showing honor and esteem to another. I respect him by honoring his value as a person, by showing he has worth.

His feelings matter, his thoughts are important, his needs are important. This in no way negates my own, but as with all marriages, there must be giving of respect from both. Things change though. He cannot serve me in the way he once did, but he has found little ways to show honor and respect to me.

If you are caring for your spouse, here are some ideas of things you can do show love and respect for the one you care for:

1. Take some time throughout the day to sit with your loved one and visit with them. The work will be there later....choose the person over the project.

2. Show interest in what they are doing. My husband is still able to type....very slowly...and still likes to write out devotionals. I have to make time in the day to read them and re read them as he edits. It shows respect. He has found websites and shared them with me. We like to spend time together doing what we can. Sometimes that means watching an old war movie that I'm not necessarily interested in.

3. Ask opinions and give them choices. I frequently ask if he would prefer spaghetti tonight or soup? Peanut butter or turkey? I try to ask his opinion about whether I should do this or that on Friday or today?

4. Touch is a great way to care for my husband. He may not be able to stand up and hug me, but I can lean over his bed or wheel chair and give him a hug. Touching his face, kissing him, or rubbing his shoulder helps him to feel connected to me physically.

5. Talk kindly to your loved one. I try to use words that I like spoken to me. Sweetheart, honey, please, thank you, I'm sorry, Do you need anything? Can I help? It takes very little time to speak kindly to one another, but the rewards are great.

6. Share your feelings with one another. For some of us, that is easy. For others, not so much. I have been amazed when my husband has shared his thoughts. The only way that someone shares with you is if they feel accepted and loved. They must know that they won't be rejected before they are willing to open their hearts to you.

Our life will never be the same as it once was, but it can be good, really good. It is like everything else in life, it takes work.

Saturday, January 3, 2009


The new year is all about Resolutions. People make them, with good intentions....and then in 3 weeks find that it's just easier to keep doing the same old things.

In caregiving, and in chronic illness, we like things to stay the same, don't we? I mean, even if something is hard to do, if we've done it before, over and over again, at least we have confidence that we CAN do it.

This year is going to be all about changes for us. My Older Daughter is working lots of hours and is helping two moms who are going through difficult times. One mom has had a difficult pregnancy and just delivered a premature baby. Another is having neurological symptoms caused from an inner ear issue. Both have 3 children that need care. So, she is pulling mommy duty for 6 kids under the age of 5. She's loving it.

Many have asked us, "why doesn't she do more to help you?" Well, I'm putting this on the internet to answer the world's question. I don't want her to. She is a girl. She needs her dad to be her daddy, not her patient. They have a special relationship and I don't want them to loose it. What our older daughter does for us is important. She is my friend and running buddy. She takes her little sister with her frequently to run errands, giving Dear Younger Daughter a break from routine. When Dear Older Daughter is home, she helps around the house, cooks, runs errands and keeps things straightened up.

Dear Older Son is getting married in a few short months. He has been out of the home for several years now, working with various ministries. He has been a help to our family in ways I can't go in to. He is a dear son, who wants to care for his mom and dad.

Dear Younger Son is taking a few classes at the community college near our home. He works four hours a day and will need time to study in the afternoons/evenings. He has been my right hand man. I don't leave our home unless he is here. But, now, it is time for him to start making his future happen. He wants to do something in the medical field, like an RN or a Physician's Assistant. I'm sure he'd like to marry and start a family some day, and now is the time to prepare for that. He's been very sacrificial, but it's his turn.

Dear Hubby requires 24 hour supervision. He may not need something for an hour long period, but someone has to be here to protect him, make sure he doesn't fall, get him water, food, to help him in and out of bed, get him out if the house catches fire, etc.

So, our lives are changing. I've talked to one family in our church, and the husband has agreed to come once a week and sit with Dear Hubby for 4 hours. What a blessing. This is a $50-80 gift, once a week. During this time, I will be focusing on Dear Younger Daughter. She needs to have mama time and we have plans for some little field trips and we'll even run errands.

We will probably have to hire outside help. The thought of that is overwhelming. Finding someone you trust, someone who will not abuse your husband while you are gone, and someone who will not rob you of your small, sentimental treasures.....I've even heard of people who steal toilet paper and shampoo. Can you imagine???

No, Medicare does not pay for what is called "custodial care". This was taken from Medicare's Website:

What is Long-Term Care?

Long-term care is a variety of services that includes medical and non-medical care to people who have a chronic illness or disability. Long-term care helps meet health or personal needs. Most long-term care is to assist people with support services such as activities of daily living like dressing, bathing, and using the bathroom. Long-term care can be provided at home, in the community, in assisted living or in nursing homes. It is important to remember that you may need long-term care at any age.

This year, about nine million men and women over the age of 65 will need long-term care. By 2020, 12 million older Americans will need long-term care. Most will be cared for at home; family and friends are the sole caregivers for 70 percent of the elderly.

While there are a variety of ways to pay for long-term care, it is important to think ahead about how you will fund the care you get. Medicare pays only for medically necessary skilled nursing facility or home health care. However, you must meet certain conditions for Medicare to pay for these types of care.

Most long-term care is to assist people with support services such as activities of daily living like dressing, bathing, and using the bathroom. Medicare doesn’t pay for this type of care called "custodial care". Custodial care (non-skilled care) is care that helps you with activities of daily living. It may also include care that most people do for themselves, for example, diabetes monitoring. Some Medicare Advantage Plans (formerly Medicare + Choice) may offer limited skilled nursing facility and home care (skilled care) coverage if the care is medically necessary. You may have to pay some of the costs.

The truth is: If you have any income other than Social Security or any savings you will find there is no help for you financially. I found one website where people who are caring for chronically ill spouses shared that even WITH Medicare coverage, they were spending an average of about $5000 a year on additional medical expenses. This included co pays, deductibles, custodial care help, and medical supplies.

Think it through....could your family afford to pay an additional $300-500 a month for medical care? Many cannot and that is part of the reason caregivers are worn out, burned out shells of who they once were.

While custodial care sounds like easy stuff, it's not. It's heavy lifting, being on call 24 hours a day, be wakened in the night, and still having to run your home and family.

So, our life is about to change....again. I'm feeling overwhelmed and frightened about it. I'm so grateful that we are out of debt. I'm grateful that we have learned to live a simple life. I'm grateful that I have a loving and supportive family. But things change, and for some of us...that's difficult.

If you are a caregiver, take some time to think this through. Do you need to make changes? Is it time for help? I know from personal experience that it is difficult, but we have to survive to the end. Call someone and ask for help.

Do you know someone who is a caregiver? Perhaps it is time to contact them. Take a day to visit. Do give at least one hour's notice...not much more or the caregiver will have mowed the yard, cleaned the house, bathed the family member, washed the car and made a "little snack to share"!!!!!

Get a first hand peek at what type help they need. Take a look at the yard. Is yard maintenance needed? How about house repairs? Housework? Would a meal once a week benefit them? Maybe a call to pick up $20 worth of groceries now and then would help. How about a plate of cookies and a cup of coffee?

Warning: Caregivers are tough nuts to crack. We don't like to ask for help, we don't know why....we feel like we should be able to handle this, but we can't do it alone. I think deep inside we all know this. Maybe the family is pressuring the caregiver to do more, alone. Or maybe the ill person is refusing help. Someone has to step in and have a heart to heart. If you aren't a caregiver, maybe YOU are that person. Be gentle, loving but firm. But ultimately, it is their decision. Wait....things will change, and maybe your help will be needed tomorrow.