Sunday, January 31, 2010

Taking a Day at a Time.....

Do you have long term plans?? Do you think about where you will be in five years, ten years, retirement? Do you have a notebook full of things you'd like to do or be? Things you would like to learn, get better at, or try?

Well, I'll be honest. I don't have long term plans. I mean, I plan for the future a bit....savings, anticipating future needs and such, but that's about it.

Caring for someone who is chronically ill kind of puts a damper on long term plans. I recently made reservations for a trip with a girlfriend. I found a B&B with a two bedroom suite that I thought would be a great place for a couple of friends to spend some fun time together. We talked about schedules and we discussed dates and we settled on a time that works for both of us.

But, I will admit, I was a bit nervous about making the reservation. I had to pay for 1/2 of the amount up front to reserve. And, if I cancel, I will loose that deposit unless the suite is rented after my cancellation. Frightening.......

And, why you ask?? Well, if you are a caregiver you already know. We just have no idea of what the future holds with our loved one. Dear Hubby is doing well. I have care set up for when I am gone....but I'm just a bit reluctant to invest our limited finances knowing that something could happen and I would be out that money. Yikes.

Making long term plans are difficult. I can't even imagine where I will be in five years. Will I still be in this house, this area?? Will my children still be at home? Where will we be in this illness and in caregiving? I can't even make myself phrase the questions I have in my heart.

I suppose that is why I must focus on today and maybe just the short term. None of us know what the future holds, where we will be. It's fine to make some plans, but we need, I NEED, to learn to hold all things loosely. And, to remember that while my future is uncertain, all that is certain is Jesus.

And, Lord willing, He will allow me to go on the respite trip I have planned in a week or so. I'm looking forward to it........

Sunday, January 24, 2010

Dealing with Cognitive Issues

Many caregivers are taking care of loved ones who have cognitive issues. From what I have read, this can be one of the most difficult and challenging things to deal with. You must be on constant watch over your loved one because in just a few short moments you could find them in a very dangerous situation.

Maybe your spouse isn't there yet....but you are starting to see small changes in him/her that concern you. Things like misuse of words, slowed responses, forgetting things that were once very easily recalled. Asking the same question two or three times. Or maybe just misunderstandings taking place more and more frequently. Maybe you're seeing some personality changes, or just some quirks that concern you.

These things can be difficult to handle. Especially if you are alone with your spouse most of the time. My Dear Hubby has some mild cognitive issues. Nothing serious, really. But at times they can be frustrating for him and for me.

It seems that the times that I am alone with him more and more without other adult communication is when it becomes more and more difficult to deal with. It seems that after a while of cognitive issues and misunderstandings, you begin to doubt YOUR mind. You start to wonder, Did he just ask me that? or is my mind playing tricks on me? Or you start questioning your ability to carry on a conversation, to explain things in a way that your spouse can understand.

Fortunately, when Dear Hubby and I have times of difficult communication, I can often call my adult children into the room to help us work through it. Sometimes, it helps you to have someone else to say, "he's just not getting it."

I think, perhaps, the reason this seems to help me is this: most days my Dear Hubby is completely coherent. He can talk, carry on conversations, maybe misuse a word here or there, but he is completely understandable, and he understands me. But there are days, when perhaps he is more fatigued than usual. Or maybe his brain is just not working as well, and I am thinking I am dealing with a completely coherent adult.....and I'm really not.

It's a difficult transition....some things he can handle just fine and some things he can't. If he is under pressure or stress, he will have a more difficult time with cognition. If he is tired, you can be assured there will be communication issues. If we can discuss things and then if I can walk away and give him time to think, we can usually come to an agreement. It's not always easy to do though. Sometimes you want to resolve an issue NOW.

But, in the end, as long as he is able to make informed decisions, he needs to do that. Sure, I can rob him of his adulthood by making each and every decision for him without asking his opinion, but that's not what either of us want.

I want to retain my marriage in spite of the caregiving.... And, in spite of his disability, he wants to retain his dignity. He wants to feel that he is still part of this marriage. It's a fine line we walk. And, it can be very frustrating. I think dealing with a spouse is so much more difficult that dealing with a parent, an ill child or even an extended family member. My husband and I are in a marriage together. We have a deeper connection than any other relationship experiences. And, sometimes these changes rob us of some of that. We must protect it as much as we are able.

If your spouse is experiencing more and more cognitive issues, perhaps it's time to have him/her evaluated by a physician. There may be medications that will help.

Saturday, January 23, 2010

When I am weak, and distressed, and alone, and none to receive my tale of sorrow, none to express a word of fellow-feeling or care for me, in the living oracles of the gospel I see divine wisdom and lovingkindness looking at me tenderly, compassionately, through the openings of my prison, and I feel that He who dresses the lily of the field, and numbers the sparrows, is near me, numbering the hairs of my head, listening to my cries, in all the treasures of His grace and power. He is the same gracious Redeemer and Preserver to every one that believes in His name.

B.A. Ramsbottom

Friday, January 22, 2010

That's my KING!!!!!!

Taking no thought.....

Take therefore no thought for the morrow:
for the morrow shall take thought for the things of itself.
Sufficient unto the day is the evil thereof.
Matthew 6:34

Matthew 6:34 reminds us that we are not to be anxious and troubled with cares about tomorrow. Tomorrow will be what it will be...we have no promise that we will even be here to see and experience the evils of the next day. And, there is plenty of evil for the day tomorrow.

To be anxious is to be full of mental stress or uneasiness because of fear of danger or misfortune. Oh, I have been there. And, honestly, it usually hits me fast and furiously. Like receiving a large bill in the mail that you were not expecting. Having a vehicle break down and having no money to repair it. Or maybe having the one we care for take a sudden downward spiral. It's terrifying.

Sometimes though, the mental stress and uneasiness comes when we are feeling overwhelmed by the daily responsibilities we face. Finances, isolation, loss, the physical work involved in caregiving, the inability to discuss things with your loved one because they just aren't understanding, the unknown future, the endless bad endings that we can imagine and the fear of being alone.

It wears on a caregiver. Knowing that you are responsible for it all. Finances, household chores, emergency decisions, short term decisions, long term decisions, taking care of the children, repairs, medical appointments, and knowing when you need to contact the Dr. and when it's time to make the trip to the ER. Family responsibilities, work responsibilities, lots of responsibilities.

How do we get through the days without feeling anxious, without being troubled, and distressed?? It's certainly not easy and it's something that most of us in this role battle on a daily basis.

I think preparation is necessary to deal with all the things that we know may be a future stress or problem that we will be called on to handle. In other words, instead of stressing and worrying about tomorrow let's make some plans to deal with the possibilities.

If you know that your spouse's health is fragile and there is the very real possibility that you will have to make an emergency trip to the ER in the near future, prepare for that eventuality.

  • Have a travel case packed with things you will need, in the short term, to be comfortable in the ER. Coins for vending machines, a book, maybe even an extra toothbrush and travel toothpaste.
  • Have a printed list of medications and dosages for your loved one tucked inside your bag. And know where your care recipients insurance card and ID are at all times.
  • Have another list of all his/her doctors and their phone numbers, etc.
  • Have the telephone numbers of two of your closest friends ready to call for support and prayer.
  • Have a plan for your children and who will fill in for you in getting them to school, picking them up, taking them to private lessons, etc.
  • Have a plan for your pets.
  • Make sure that you keep things done. Things like laundry, keeping the fridge cleaned out, dishes washed, house straightened etc. You never know how long you'll be at the hospital. And, you never know if this will be the time that the entire family will be called in.
If you are concerned about car repairs and issues, start a savings account just for that purpose. Have your car checked out and keep it maintained.

If you are concerned and worried about your future: what will happen if scenarios, make a list of possibilities and write some of your thoughts and ideas of what you can do.

Logically think these things through, write your ideas in a notebook, make plans, talk with people you trust and get advice. Be prepared. Pack your bag, open your savings account, get your documents in order, write out your plans.

And, after all of that is done, close your notebook. Place your hands on top of it and pray. Give your plans to the Lord Jesus Christ. Don't have confidence in your plans but transfer that confidence over to your Father in Heaven.

Say in an audible voice something along these lines, "Lord Jesus, I have made my plans and preparations. I have been a good steward of the things you have given me. I have sought advice from people I trust, I have packed our bags, I have contacted people and have things organized and planned. But, I know that what honors You is not my thoughtful plans, my organization, my abilities and performance. I know that what honors You and brings a smile to Your face is faith in YOU. So Lord Jesus, Creator of all things, Savior of my soul, my Strong Tower, my Shield and defense, I place everything in Your hands. I trust You for my future. I know that nothing happens that You do not allow, and I trust You to work all things together for my good. I give You my plans and I trust in You."

We should make plans, we should be prepared, but ultimately, if we want to overcome our distress and panic, if we want to overcome our anxieties and fears, we must turn every aspect of our lives into His care. We must trust Him...for everything.

Wednesday, January 20, 2010

Finding Friendship......

Proverbs 18:24 says, A man that hath friends must shew himself friendly: and there is a friend that sticketh closer than a brother.

As a caregiver, we each deal with some measure of isolation. We feel alone, separated from others, and we often feel forgotten. It happens.

I recently read on a website for caregivers, that perhaps the isolation that we feel is really not so much that others are pulling away from us, but that we are pulling away from them. I'm not exactly sure about that, but maybe there is some truth in that.

I know that as my husband was able to do less and less, there were fewer opportunities for us to participate in activities. Some things were just physically impossible for him. And, then we began to notice that certain things really bothered him. Loud background noise, large groups of people, heavy odors, and more than one thing happening at once. (Like eating in a restaurant.... trying to eat, having conversations, music playing in the background and lots of noise.) He had sensory overload.

And, then Dear Hubby would tire out very quickly. So we didn't go to something that would cost us more than a couple of hours in time commitment. And, then, if it was too far from the house, you had to factor in driving time. Sitting up in the seat of the van was difficult and would tire him out.

For a period of time, Dear Hubby also didn't want to have people into our home. It was almost as if he had retreated there for quiet, peace and safety and he didn't want anyone invading our private space.

I began to decline invitations to do things too, because I would think about how it was once a family affair and I felt very strange doing things without my husband. I felt like a third wheel. I also had some bit of guilt in going places and enjoying things when Dear Hubby couldn't. And, in some weird way, it felt wrong. (It definitely wasn't, that was just my thinking at that time.)

Part of the isolation was because I felt as though I had nothing to talk about. People really didn't want to hear the details of how my husband was doing. They would ask, politely, and I got the feeling that most wanted a 2-3 minute explanation and that was it. Or if they wanted more information, it was mentally and emotionally exhausting to go through it all and explain the details of a disease most people knew nothing, or very little about. Or if the subject got off into other areas, I would begin to feel uncomfortable. Things like complaining about their husband who hadn't taken out the trash. Discussing their next family vacation. Or even discussing a trip to the park with their kids, which we hadn't done in years. It was too difficult to listen to and I had nothing to contribute to the conversation.

And, I was an emotional basket case. I never knew what would set me off, and I might end up crying at weird times, in public places, making myself and my friends uncomfortable.

I wasn't really at the point where I was ready to move past the idea that this was my life. Maybe I was clinging too tightly to my past life, the things that were and would never be again.

But, over the past year or so, I've seen the change happen. As I've said before, I began to realize that today IS my life, and I need to learn to enjoy and participate in the life I have. And, I need to stop focusing on what I don't have.

So, I've begun reaching out. I've called friends, sent messages, and let people know that while I can't leave home as often as I once did, that they can come see me. I've had to work at it, but I'm learning to accept these limitations and do what I can with them.

I've learned that I cannot have the house prepared for company, have Dear Hubby and I both dressed and in our right minds, make a meal and dessert, etc. It's just too much. So, I've learned to speak up and tell my friends that I can't cook, but I can sure make a great cup of coffee or tea. I can make an easy dessert the day ahead. And, sometimes, friends will volunteer to bring us a meal to share, or to pick up some take out.

Because of the isolation I've felt, real or imagined, and because most people don't know what we want or need, I've had to start the ball rolling. I've had to let it be known that we need our friends, we need time of fellowship, while Dear Hubby and I can both enjoy it. There may come a day when he can't handle having people in our home....and then I'll have to make a new plan.

Perhaps then I will make lunch dates with girlfriends, or like I did recently, I can go to a friend's house and drink coffee with her. Or maybe I can plan a 3 or 4 day respite trip and take a girlfriend with me. Or catch a movie with one of my kids.

If we don't make plans, things won't happen. We have to reach out and show others that we need them. And, most people are kind and will reach out to us in return.

I'm beginning to see people again and I'm realizing just how much of life I missed out on. No, life is not perfect, things aren't the way I wanted them to be, but life is pretty good.

And, I have some really amazing friends.

Monday, January 18, 2010

Finding Patience....

Patience. Just reading the word makes chills run up and down my spine. Why is that? Because, if you read your Bible, you know what brings patience into a Christian's life. Yes, that's right....trials.

James 1:3

Knowing this, that the trying
of your faith worketh patience.

Trials are not really what I'm looking for, but patience, yes. There are so many opportunities to work on patience, because there are so many trials to endure. There are so many opportunities each day to see if what I believe about God, about my relationship with Christ, is true.

I'm not talking about the belief that God wants us to have a happy, carefree existence. I'm talking about the belief that God, my Father, wants what is best for me. And, though I don't always like it, that may mean that some very difficult things are ahead of me.

I believe that patience and faith go hand in hand. No, what we experience is NOT easy. What we do day in and day out is hard. And, the fact that there are few of us who really understand, makes it more difficult. Not knowing when it will end, and wanting it to, only to realize that for that to happen, my loved one must pass from this life into eternity is heart breaking.

Patience reveals to ourselves and to others what we truly believe about our Father in Heaven. He is faithful, He is trustworthy, He is all seeing, all knowing, and everywhere all at the same time, He is love, He is just, He is our very life.

That is not to say it is wrong to make our life as good as we can. Do what you can to make this caregiving life easier. If you can change things for the better, do it. But, when you can't. When you have done all you can. Find patience.

Know that God is working in our lives. He is allowing these very real, very, very difficult things for our good. (Romans 8:28) He is developing our character, our faith in Him, He is maturing us....and just maybe He is using us as an imperfect witness to His perfection.

Wednesday, January 13, 2010

Finding Contentment.....

I am discovering little bits of contentment in my caregiving experience. Talking with a friend recently, I realized that it has been a very L-O-N-G process for me. I've been in this caregiving role for ten years now, and just recently have I found that I am dealing a bit better with the limitations in my life.

Maybe I've finally accepted the fact that this IS our life. I am not going to wake up and find that it's a bad dream. My Dear Hubby will never experience physical healing (aside from miraculous intervention by the Lord). I've accepted the fact that things aren't getting easier, for him or for me. This disease WILL progress and the needs will become greater and the burden will become heavier. Bad or good, it is true. And, for some strange reason, today, this does not depress me.

Elisabeth Elliot says, "In acceptance lies peace." Perhaps, after ten years, I have begun to accept what has happened to my husband, to me, to our family, to our future, to our marriage, to our ministry, etc.

We all deal with things differently, and evidently, we pass through the stages of grief at different rates. Remember reading them??

  • Denial (this isn't happening to me!)
  • Anger (why is this happening to me?)
  • Bargaining (I promise I'll be a better person if...)
  • Depression (I don't care anymore)
  • Acceptance (I'm ready for whatever comes)

Thinking back over the past ten years, I'm pretty sure that I spent WAY too much time in the anger stage. I knew there was no bargaining with MS or with God, so yeah, bargaining was going to get me no where. But, I found anger to be the one I wallowed in...... well, anger and depression.

I've spent a lot of time wondering why. Not so much why did it happen, but more along the lines of the why did the details of it happen. Why at such a young age? Why when our children were still young? Why do I feel like an alien, and so all alone? Why is there no one who understands what we're going through? Why do people forsake you? Why can't we get help? Lots and lots of whys.....and all these whys were because of an underlying anger I had toward MS. I hated it, and I was mad.

I was mad at the symptoms. I was mad at the way MS invaded every area of our life. I was mad at people who got to live the life I was supposed to be living. I was mad at the way our children were robbed of their dad's hands on involvement. I was mad at the clueless, hurtful words said to us. I was angry at those who just didn't get it. I was just plain angry. And most of the time I called it hurt. I was just hurt by friends, by my church, by family members, by total strangers.

Yeah, it was bad.

And, maybe now I am learning to accept the limitations, the isolation, and the restrictions. And, I'm learning that it's not all bad. Maybe that's where "finding the good" has helped. Finding little joys on the journey. Like rounding a corner and finding a scenic overview. Like driving through a thunderstorm and being rewarded with a rainbow. Finding a song amid the noise. Seeing a flower bloom between the cracks of cement. Unexpected little pleasures.

A cup of coffee with a friend, the songs of birds, laughter shared, seeing compassion grow in your heart for others who are hurting, blue skies, a baby's smile, a young child's antics, a phone call from a dear friend, an encouraging word from a friend who is going through something much more difficult than you are, a kind deed from a stranger, and hand reaching out to hold yours. I'm beginning to see that life, overall, is still good, even though it is difficult.

I've had to adapt my lifestyle to fit the needs of my husband and while it can feel smothering, or limited, or perhaps restrictive, I have found a little slice of contentment. I have found that I like keeping my hands and my mind busy, that listening to music soothes my soul, making quilts and being creative calms me, opening my home and loving people keeps me connected and whispers of praise and thanksgiving to my Creator keep my heart focused on Him.

I've found that anger makes me ungrateful. That it shuts my heart and spirit to learning. That it causes me to be unpleasant and chases the people I love away. I leads to unkind words and thoughtless deeds. It tears down relationships and kills love. It robs and steals and destroys.

So, I am seeking acceptance. I'm taking it in and saying, Teach me Lord.

Friday, January 8, 2010

Begin by thanking Him for some little thing, and then go on, day by day, adding to your subjects of praise; thus you will find their numbers grow wonderfully; and, in the same proportion, will your subjects of murmuring and complaining diminish, until you see in everything some cause for thanksgiving. ----Priscilla Maurice

Thursday, January 7, 2010

Finding the good.....

it's not always easy, is it? It's not like we need to just get over the fact that our loved one is sick and be happy. When you are a caregiver, almost every moment is consumed with illness, pain, suffering and difficulty. And, it can be an emotional drain.

My last post, I discussed my resolutions, and honestly they are my attempt at finding the good and learning to enjoy the little things. I doubt I will ever be that light hearted, silly, happy go lucky girl I once was, but I want to have a grateful heart. I want to enjoy the days I'm given, even if they are difficult. And, that may just mean that I will have to search harder and harder as Dear Hubby's disease progresses.

He is spending more and more time in bed, he is feeling bad most days and is getting weaker, but one thing I am grateful for is that I do get to spend time with him. I am able to be home with him, talk with him, laugh with him, have a cup of coffee with him, kiss him, hug him and just be with him.....that is truly a blessing.

We lost a dear friend at Christmas time, and I have thought about how empty it must be without him in the home. Yes, they are grateful his pain is over and would never call him back, if they could.....but I know they miss him terribly.

I am given this day to be with my sweet heart and I am grateful.

Sunday, January 3, 2010

New Year's Resolutions

I never make New Year's Resolutions, but there has been much blogging out there about them, and so I've been giving resolutions a thought or two. I've decided that maybe they aren't all bad. So here are some of my resolutions.

This year, I resolve to.....

...spend time doing things I enjoy.

...hug an old person.

...hold a baby.

...forgive someone who has wronged me.

...laugh til I cry with a friend.

...make room in my life for coffee dates with people I miss.

...appreciate beauty when I find it.

...brush my daughter's hair, realizing that in the very near future, she won't want me to do that.

...look into the bright blue sky, and remember that God made this day and I WILL rejoice in it.

...dry the tears of someone I love.

...share a memory with my husband. someone, just to tell them I love them.

...write a note of encouragement.

...take a trip with my girlfriend.

...share a smile with a stranger.

...pray for someone who is hurting.

...cry with someone.

...feed the squirrels.

...listen to birds singing in my back yard. a child play.

...sit under the trees.

No, I'm not resolving to change my life in big ways, but to live my life in small ways that have great meaning.

Friday, January 1, 2010

Happy New Year care giving friends. May this year be a year for moments of joy. May you have time and energy to enjoy little pleasures. May those we care for feel loved and may we each feel appreciated.

We don't know what our futures hold, but we can face it knowing our Father walks before us.

Much love and peace,