Monday, August 23, 2010
It turns what we have into enough, and more.
It turns denial into acceptance, chaos to order,
confusion to clarity. It can turn a meal into a feast,
a house into a home, a stranger into a friend.
Gratitude makes sense of our past,
brings peace for today,
and creates a vision for tomorrow.”
- Melody Beattie
Believe me, I do understand your life. But you know what I have discovered about humankind? I have discovered that we all have different blessings.
Yes, we do. As caregivers, our blessings, when listed, would look completely different from what I'll call "normals". Those of us who are caring for our loved ones have many blessings that we overlook each day.
I've talked about finding contentment before, but just maybe contentment is also found along the road of counting our blessings.
So this week, I'm going to try to focus on counting my blessings, as difficult as that may be at times.
I am blessed.....
- because I get to be at home with my husband and my last remaining minor child. We can enjoy one anothers company.
- in that I have very reliable air conditioning in this oppressive heat wave. Our city has had temps in the 100's for several weeks now, and we've been under heat advisories. No one can handle temps this high, and certainly not my Dear Hubby with his MS. It would kill him, literally.
- to have people in my life who care deeply for me. We have friends from our past visiting us, and friends who have made a deep connection with us. I know of 6 women that I could call right now and I know that they would pray with me and for me. I know these women would run an errand for me or just come here to sit with me and hold my hand. I am loved.
- that my husband while almost completely bedridden, is able to communicate, visit and share with me. Many caregivers don't have that, and I know that I may not always have that either.
- with medical equipment, which makes caring for my husband less physically demanding that it once was. A hospital type bed, a Hoyer lift, medical supplies and consults with nurses, aides and doctors when we hit a rough spot.
- to be able to share my heart with others, to be heard.
- to finally understand in a small way how my Father in heaven sees me. This is a recent development as we've begun to understand the grace of God. Understanding who I am in Christ has removed a lot of condemnation that I've felt the past ten years when I've failed at being a "good wife" or a "sacrificial caregiver". I am growing in grace and in the knowledge of my Lord and Savior Jesus Christ.
- because I am mentally healthy. No longer do I struggle with depression or thoughts of suicide. My life is demanding and challenging, for sure, but my mind is strong and healthy. God has done a remarkable work in my life.
- to have little moments of quiet in my life, where I can reflect and remember.
- in having memories. I can remember the good times our family has had together. I can remember the painful and burdensome times and can recall the ways God has moved on our behalf. I can cry over the loss of children through miscarriage and rejoice in knowing I will see them again.
- in having met some wonderful people through the internet.
Those of you who have contacted me through this blog have had a profound influence in my life. As you share your story with me, I remember all the things I have been through. I see myself in your story. And, through you, I am feeling a calling on my life. I anticipate that God is going to use me in a way I NEVER would have dreamed. My life may only affect one person, but I am willing to be used. I have nothing to give. All I can do is point to the One who has done a work and to share this: If God can change my heart, if He can heal my mind, if He can provide for me, He can do the same for you.
I am proof positive that God is still working miracles, large and small......
I am a blessed woman.
Saturday, August 21, 2010
Right now, of course, my focus is on my husband and caring for him. Being the best wife I can be to him. And, we still have one minor child at home, so I'm still in the mothering role too. And, yes, my adult children still need a mother. And, I am a grandmother, who loves spending time with her precious grandson.
But this I know, I am beginning to see things that I know the Lord is placing on my heart. I am beginning to see areas that are lacking and I'm wanting to fill the gaps. I can't fill them all, but I can start small and do what I can.
My heart today is for the caregiver. For the person who is giving of themselves until it hurts. My heart breaks to think of how many are doing this alone, day after day, week after week, month after month. No relief in sight. What keeps them going?? Love. Compassion. Duty. Whatever the reason, they need our support.
If you are a caregiver, let me say how much I respect you. Let me be the mirror to your heart. Stand here and see the truth. You are amazing. No, you are not perfect. You get frustrated, you're tired and lonely....but you are doing a good thing. You are doing a hard thing. If your loved one cannot or does not voice their appreciation, let me be that voice you need to hear. I appreciate you. I respect you. I know what you are doing and how difficult it is. I know that you are laboring, hurting, and going through such hardship that some days it is hard to breathe.
I love this passage of scripture, and I think this is what a caregiver does each and every day...
and all the holy angels with him,
then shall he sit upon the throne of his glory:
32And before him shall be gathered all nations:
and he shall separate them one from another,
as a shepherd divideth his sheep from the goats:
33And he shall set the sheep on his right hand,
but the goats on the left.
34Then shall the King say unto them on his right hand,
Come, ye blessed of my Father,
inherit the kingdom prepared for you
from the foundation of the world:
35For I was an hungred, and ye gave me meat:
I was thirsty, and ye gave me drink:
I was a stranger, and ye took me in:
36Naked, and ye clothed me: I was sick,
and ye visited me:
I was in prison, and ye came unto me.
37Then shall the righteous answer him, saying,
Lord, when saw we thee an hungred, and fed thee?
or thirsty, and gave thee drink?
38When saw we thee a stranger,
and took thee in? or naked, and clothed thee?
39Or when saw we thee sick, or in prison, and came unto thee?
40And the King shall answer and say unto them,
Verily I say unto you, Inasmuch as ye
have done it unto one of the least of these my brethren,
ye have done it unto me.
Sunday, August 8, 2010
I keep in touch with people from my past. I won't say much more about that, because I don't want to identify anyone and hurt feelings. Most of the people in my life, past and present are Christians, and most are women.
Now, as women do, they are sharing links with me. I get e-mails from them with links to articles and videos. I see on Facebook all sorts of messages written to Christian women. They talk about being a good wife. They share insight into how to live out your faith in your home.
And, here is where the admission comes in. I'll admit it, those links, those videos on how to "love your husband" and "respect" him frustrate me so terribly. I can feel my blood pressure rising. I know my veins are constricting and my heart rate increases. Isn't that horrid???
I'm trying to figure out why. Part of it is that I allow myself to read the articles and watch the videos. I usually don't get very far into it before I have to stop myself or I might have a coronary!
I'm thinking the thing that bothers me so much is this. It's shallow. It's ridiculous. It's ..... I can't even think of a word.
Why do we need to hear women who have children ages 10 and 7, women who have been married for 12 years, explaining what it means to "love your husband", to "be a help meet"? I remember what life was like 12 years into marriage. I was head over heels in love with my husband, life was fun, I enjoyed caring for my little kiddos, we traveled and we went on dates. It's easy to love your husband at that stage of life.
Here is where the rubber meets the road. Have you invested in your relationship? Have you prepared yourself for the future? Are you strong enough to stand through life WITHOUT your husband? Sure, we should learn to love and depend on our husbands, but more importantly, are you a COMPLETE ADULT? Can you make decisions and do you know what you believe? Are you training your children to be adults? Or are you training them to be perpetual children?
We never know what the future holds. 12 years into our marriage, I had no idea what was around the corner. I had no idea that just a few short years later, I would be called upon to do things I thought was still decades away for us. We entered the twilight years 20-30 years ahead of schedule.
Here is my advice to young married women. Enjoy your husband! Invest in your relationship with him. Listen to him, and give advice to him. Be a help to him. Not nagging certainly, but don't be afraid to say what you think and feel. He has a wife for a reason. If you have an idea, share it. Let him be who he is, let him go with the men and let him do man things. You take time for you, be a woman, try new things, have opinions, think deep thoughts.
And, start now----- raise your children to be adults. Give them room to grow and be who God created them to be. Encourage their interests until they find their passion. Invest in their passion and teach them what they need to know in order to serve GOD. Give them responsibility and teach them to learn from their failures. Let them fail, and love them through it.
Love really is action. It's doing when you just don't think you can another day. It's respecting his health care decisions because he has a right to choose. It's standing up for yourself and saying no to bad behavior. It's taking time to care for yourself, so that you can care for others. It's listening, sharing, being there when no one else is. It's lonely days and terrifying nights. It's facing the future knowing that it may be bleak, but Jesus is THERE, just as He is HERE. It's understanding that you may find yourself stretched to the very end of yourself. It's walking away when you need to and running back again to throw your entire self into another life. It's deep breaths when you want to cry or scream. It's clinging to Jesus when there is nothing left. It's doing the right thing no matter who it goes against. And, it's giving of yourself til it hurts in ways you never dreamed it could.
Saturday, August 7, 2010
Thus began the search for someone else. It's always cheaper to hire someone, agree on a price, hours, etc. but you can run the risk of getting someone who will take advantage of you and your loved one. I've heard so many horror stories of loved ones abused, items missing, medication running short because someone needed a fix.
So this time, I called a Home Health Care Service. They came out, did an evaluation, we worked on a care plan, and decided on days and times. We decided on having an aide out once a week. The agency has a four hour minimum, and the rate is $20 an hour. They do background checks, have references and every three months, they send someone out to evaluate and question us on how the aide is doing. I can call them anytime, and they can send someone out. It probably won't be the same aide, but at least we know we have that as an option in an emergency.
We went through two aides before we met Jennifer! Now, we explained to Jennifer that her first and most important task when she is here is to bathe and care for my husband. She is to take care of him and if there is any time leftover, she can do some "light housekeeping".
The amazing thing is this: she is a WHIZ!! She does my husband's personal care, and does it thoroughly! Then she runs errands around the house for him. Getting his hairbrush, finding things, moving things around and making coffee. And, the really amazing thing??? She has time leftover to do "light housekeeping"!!! Yay for ME!!
Jennifer changes Dear Hubby's sheets, washes, dries and folds them. She dusts our room, cleans the bathroom counters, sweeps, mops, vacuums, dusts our living room, puts away any unfolded laundry that might happen to be in the dryer (oops). She unloads the dishwasher, cleans the kitchen counters, dusts the window sills, etc. She is a hard worker and gets so much done in such a short time.
I take the opportunity when she is here to leave the house, run errands, go to the movies, do some FUN shopping, or grocery shopping and I've been known to take naps! What can be better than getting into bed and knowing you don't have to get up for FOUR HOURS??? Sometimes I sleep for a while and then read in bed. Sometimes I get an iced tea and get on the computer before my nap. And sometimes, (don't tell anyone) I sleep almost the entire time!! It's really wonderful.
Once we had company coming over at 5:30. Jennifer would be leaving at 5:00. So, do you want to know what I did? I was supposed to make the veggies for sandwiches, while the other ladies were bringing soups, deli meat, cheese and dessert. Jennifer came in, I took a nap and right before she left, I hopped in the shower and got ready for company. She had Dear Hubby ready, the house was sparkling. She had even cut up tomatoes and washed lettuce for the pot faith meal. I took a three hour nap, was able to get dressed for the get together without interruption. Dear Hubby was dressed, the house was clean and my portion of the meal was done. It was unbelievable!!
Oh yeah, I'm taking advantage of having Jennifer around. We pay for her help, but I think we're getting a pretty good deal. Not only does Dear Hubby get bathed and taken care of, but I get time out, and my house gets a good once over. Nice, very, very nice!
Monday, August 2, 2010
For years we went to a particular church and made lots of dear friends. There were always a few in particular that we were closer to than others. About 8 months ago, one of the couples we've known for 16 years contacted us and asked if they could organize a get together with some other couples at our home. They would bring the meal and dessert if I would provide iced tea. That started a monthly get together with 5 couples that we love dearly.
It has been such a blessing for us to see the people we once saw on a weekly basis back when we all went to church together. Our lives took different turns but through it all, our friendships remained close. (They have all left our former church too.)
The other thing I've started doing is asking friends over to come spend a few hours with us, drinking coffee and getting caught up. We are connecting, through Facebook, with friends from our past and it's been wonderful having people in our home again. Of course, it is a bit of work, and there is always the chance that I will have to call the get together off because my dear hubby is not feeling well, but it's been worth every little bit of work.
We left our church of 16 years about a year ago. We joined a new church, and even though my sweet husband and I are not able to attend, we have been so blessed to have our Pastor visit with us almost monthly, sometimes more often than that. We have been amazed that a Pastor with such a large congregation would take his time to visit with us. There is no way we are going to be able to contribute to the church in traditional ways. We cannot attend, Dear Husband is in bed for days on end and usually out of bed only for a few hours when he does get up. We cannot contribute by participating in activities sponsored by the church. We do not have much to give financially either. And yet, this minister meets with us, answers questions we have about our reading of the Bible and encourages us. He loves us and accepts us and constantly asks us if there is anything we need. Our answer has always been the same, we need fellowship and we are finally getting it.
I understand that these situations were not organized by me. I think I was afraid of being turned down, and honestly, there was a time when I thought I had nothing to offer. I felt so alone and, I'll admit, no longer of use to my friends. It seems to me that the Lord has done this work on our behalf and I am feeling more connected to the world around me. I think that I will always, as a caregiver, feel a bit out of sync with the world and all it's busyness, but at least I can feel connected to people who we love.
Finding people who will stick with you through the difficult days of caregiving is NOT an easy task. I can't go out with friends as much as I'd like. I can't participate in a lot activities because finding someone to sit with my husband is not an easy task. I cannot invest much of my time or energy into relationships, mainly because so much of my time and energy is committed to my husband.....the one who comes first in my life.
If you are feeling trapped by caregiving, reach out. Call up those friends, contact them and let them know that you'd love to see them again. It might just develop into a very special connection that both of you were needing.
Thursday, July 22, 2010
Sharing your heart, with pure motives, without ill intentions, regardless of the pain inflicted is a good idea. My openness has brought about some changes. I'm not saying that I made the changes, but sharing my heart brought about some open dialogue and for that I am grateful.
Dear Hubby and I are experiencing a new found love and respect for one another. Openness, sharing, love and respect are good things in a marriage, in sickness and in health.
Can I offer one piece of advice?? If you and your ill spouse are having marriage issues because of the illness, please speak up. Please reach out for help. These are big things we are dealing with in this life as a caregiver. Let's not make it more difficult than it already is.
And, here is a big (((((HUG))))) for all of us on this road with our spouses. May we find the gifts amidst the pains, may we reach out for the life lines when we are sinking and may our love and respect grow in new and meaningful ways.
Sunday, July 18, 2010
Saturday, July 17, 2010
Chronic illness does things to a person, whether they are the one who is sick or the whether they are the caregiver. It changes us. It's painful, terrible, good, bad, difficult, trying, beneficial, harmful and frightening. It brings hope, fear, worry, joy, loss, sadness and peace.
We can learn so much from illness, and at the same time, we can be robbed of so much. We can grow during these times, but we can also loose so much. Things change in chronic illness and most of us don't like change. Oh, fun changes we like...things like vacations, new restaurants, etc. But most big changes in our lives, we fight against. Especially the bad changes, the terrible things, the hard stuff.
I've been doing some fighting. I've been holding on to things..... and finding them changing on me has done a number on me. I don't like for my nice life to change into a hard life. I don't like the things the illness has done to me and to my husband. And, while I'm fighting, I'm realizing that fighting changes nothing, except maybe makes me a harder person to be around.
I'm trying to let go of some things, but sometimes it's hard to know what to hang on to, what to fight for and what needs to be approached with an open hand. Open to let the change happen and learning to live the new life, the new things.
Love is always worth fighting for, but sometimes love changes. And, that's one I'm having a difficult time with.
This past week, hubby and I sat down with a Pastor who has been such a blessing to our family. I was open, I was honest. Something I said hurt my husband. And, I'm not exactly sure of what the Pastor now thinks of me. I'm sure he still loves me. He's a gracious and kind man. But the main thing is this: I was honest. And, because of that honesty, some things have been talked about in our home.
The only advice our Pastor could give either of us, my hubby and I is this: pray. We both have one specific prayer to pray. We are each asking our Father in heaven for a specific thing. I will share mine.
I am praying for the Lord to give me a supernatural ability, a grace, to accept this life and deal with the difficulties I face each and every day. It sounds simple, and while I have prayed this many times since we began this journey, I am now focusing my heart and attention on this. I NEED supernatural ability because I cannot do this another day in my own strength. Ten years in and I have lost my ability. My strength has failed. Sure, I've known that as Christians we are never to do anything in our own strength and all this time, I've felt as if I was using the strength of the Lord to get through the days. And, now as the strength is beginning to fail me, perhaps I'm seeing that I've been living in my own strength.
I am begging my Jesus to do this work in me. Will you agree with me in prayer that He will give me supernatural ability and grace? I want to walk to the end of my time here in the valley, with the Lord's hand upon me, giving me His strength.
Tuesday, May 18, 2010
But, recently Dear Hubby has gotten weaker and weaker, and some days he cannot lock his knees when I pull him to a standing position. When that happens, there had better be a wheelchair or bed behind him.
Last week he and I discussed that as he got weaker and was unable to support his weight, we would have to make some changes. And, as things have turned out, those changes have come a bit faster than we thought they would.
So, this morning, we used the Hoyer lift to get him transferred from his bed to the wheelchair. A few bumps on the road, but over all, it went smoothly. I can operate the lift all by myself. Rather nice. And, he and I both felt secure that he wasn't going to fall.
And, now we are looking online for the conversion kit to make the lift electric. Using the Hoyer in manual mode (as paid for by Medicare) quickly makes you realize "this ain't gonna get it". Conversion kits run about $700. A small price to pay, perhaps. But ugh. Medicare isn't all it's cracked up to be, but of course, anything is better than nothing.
Now on to the next set back, adjustment, retraining, and finally another new normal. Ever increasing disability leads to learning new things, retraining your brain and adjusting to the new limitations.
Of such is life, when dealing with chronic progressive illnesses.
Thursday, May 13, 2010
That's what I'm trying to do. Just this week, I stood at my husband's bedside and said loudly, I NEED A BREAK! He kindly answered, Ok. And, I finished getting him, myself and my youngest child ready for the day. A friend was coming to sit with my husband, and I was about to head out the door for haircuts for daughter and I and then on to the dentist.
Dear Younger Daughter and I did enjoy getting our hair cut, but honestly sometimes getting a haircut can be just another thing on your list of "things to do" for the day. We stopped afterward and ate some Italian food, and had a nice little visit before the dental appointment. That was fun. And, Dear Younger Daughter did well get a little cavity filled, but like me, she is difficult to deaden and was in some discomfort. We returned home, I was tired. We visited with our caregiver for a while, I made coffee, and snacks, Dear Younger Son picked up take out for dinner, and we did little that evening other than watch a movie...... well, and our bedtime routine, which you get if you are a caregiver.
I haven't gotten that break yet, but the lunch out was a bit of a respite in between marking two things off my list. The next two weeks are more dental and orthodontic appointments for Dear Younger Daughter. And, I got a phone call this morning about my prescription sunglasses, evidently there is a problem, again. And, it looks like I may need to make a run to TSO, again. More appointments.
When do I get that break???? I'm not sure. Four hours on Wednesdays off, which are filled with appointments. And, Saturdays, four hours of Home Health Care, which are filled with grocery shopping, etc. Hmmm, that doesn't leave much time for respite.
Finding someone to be here for 24 hours, so I can have time off is NOT always easy, but I'm in the process of finding some way to get it done. I need a day at the beach. For some reason I know it is what will heal me, soothe my trouble spirit. Some music from the iPod, a book, wind blowing in my face....that's what I need. And, I'll get there, somehow, someday.
Just gotta hang on......
Saturday, May 1, 2010
Paula I wanted to ask you a question. Since my mother in law has passed and we are now full time caregivers for Pop, no one comes by to visit him. Before all of her sisters and family were always here. We have only had a handful of visitors since January. My sister in law comes every other weekend and she sits for us sometimes when the kids have a program. How do I go about telling them that he was a part of the family too. He needs his friends and family. We have our friends and I can see where it is bothering him. if you have any advise I would be grateful.
God Be with You and Bless You
LaLisha, thank you so much for reading and commenting on my blog. I am sorry for the loss of your mother in law and your children's grandmother......
I understand that your father in law has had few visitors since the loss of his wife. It seems that when someone passes away, many people do not know how to respond or what to say. Immediately following the death and during the time of the funeral people often call, send cards, visit and bring meals. But once the "crisis" has past, many visitors fall away and forget about the one left behind to grieve. It's a common occurrence.
While my husband is still here with us, we've noticed that fewer and fewer people come to visit. It's been a long while since we started down this road of caregiving and the emotion of the diagnosis is no longer fresh in people's minds.
Here are some things that may help you, and others who are struggling with watching your loved one grieve over the loss of friendship and fellowship.
1. Have a family meeting. Invite everyone in the family to come over and discuss the situation. Just by reading your comment, I see that not only is your father in law not receiving visits from family, but you have one sister in law who is coming in every other weekend to sit with dad. I know you appreciate that, and today it may seem like enough, but honestly if you are only getting a break twice a month, you may find it to be too little. Care giving is rewarding, but also very exhausting. I suggest that you let your family know that while you will care for your father in law day in and day out, that you need for them to come once a week and sit with dad for 4-6 hours so that you can run errands, and then 3-4 times a year, you need a week off and need someone to fill in for you. You are giving more than 100% everyday and you need to maintain your physical and mental health in the midst of this care giving. You have children and a marriage and your husband and children need you. You are valuable to many people. And, you matter.
2. Get out your father in law's address book and start making calls. Perhaps we think we shouldn't have to do this, if people genuinely cared. People do care, they just get busy or have difficulty putting action to their thoughts. I have found that inviting people over for coffee and dessert is a great way of keeping our loved ones in touch with their friends.
3. If you attend a church, let your Pastor know that your loved one would appreciate a visit. Or contact Sunday School teachers, and leaders of the Senior Group at the church. Perhaps there are people who would be willing to visit your father in law. We joined a new church in the past 6 months and we have discussed with our Elders and Pastor the need for fellowship for shut ins and home bound members. Perhaps your call will start a new ministry at your church. This is often how it's done. A members sees a need and has a passion for an area of ministry, and starts the fire going.
4. Contact your county's Dept. on Aging and Disability. Many times there are programs for the elderly that we are completely unaware of.
While the best thing would be for family and friends to see the need themselves, often that is not the case. "Out of sight, out of mind" is often the rule of the day. Once our loved one is unable to participate in the activities they once did, people often forget about them. Or they get too busy and assume that someone is visiting them. Unfortunately, that is not always the case. Many elderly and disabled people are left alone, with their need of companionship dependent on the the people who care for them day in and day out. And, the caregivers are left to meet each and every need alone. This contributes to caregiver burnout and often leads to our loved ones not receiving the care they deserve.
Thank you for your concern for your father in law. I understand how exhausting it can be to care for someone full time. We are so careful to make sure they are taking the meds, bathing, dressing, feeding, etc. that it's easy to overlook our loved one's need for fellowship.
Reach out and let his friends know that he needs them and would enjoy visiting with him.
Here is a hug to all the caregivers out there, striving each day to ensure that our loved ones are getting the best care possible.
Wednesday, March 3, 2010
We've had some things done around the house and Dear Younger Son and I have been doing some cleaning of the garage! As I type this out, I am waiting for the sounds of the heavy trash truck running through the neighborhood. I'm praying that they bring an EMPTY garbage truck with them. We've got lots of recycling sitting at the curb as well as some honest to goodness junk. I'm feeling the bounce of a woman who lost a TON of junk out of her garage this morning!
This weekend is the baby shower for my Dear Older Son and Dear Daughter in Law. Little Grandson is due in about 6 weeks!! The two Grandmother's are hosting the shower and we're both very excited for our Dear Children as they learn what it is to love their very own child. There is nothing like it, is there?
Dear Hubby is excited to meet his grandson too, and has enjoyed watching the little mommy's tummy grow!!! He has been spending lots of time in bed, as he grows weaker physically. But it seems that the Lord keeps encouraging our hearts and giving us a reason to smile and a hope to hang our hat on. The Lord has blessed us with visits from our Pastor as well as some very dear and close friends. Having someone to love you is such a blessing.
And, we are excited for Dear Younger Son, who began work this week in his chosen field. He is a certified EMT. He picked up his uniforms yesterday, and today, he begins his first few ride outs. He will be riding an ambulance with a supervisor for two or three shifts and then after that, he'll be riding with his partner. Very exciting times for him!!
Praying all is well with my caregiving friends. Many blessings for a great week!!!
Saturday, February 13, 2010
Sunday, February 7, 2010
It's been a year since I've taken time away. Last time I went to my dad's 80th birthday. I should have done this sooner. I should have made it a priority, but life has a tendency to get in the way.
Please pray for my family while I am away. I've had a horrible cold and then a stomach bug. Now, Dear Older Daughter has the bug. Pray that Dear Hubby will stay well, and Dear Younger Son, who is taking care of my hubby while I am gone will stay healthy too.
Sunday, January 31, 2010
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
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
Friday, January 22, 2010
for the morrow shall take thought for the things of itself.
Sufficient unto the day is the evil thereof.
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 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
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
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
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
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
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.
...call 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.
...watch 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
We don't know what our futures hold, but we can face it knowing our Father walks before us.
Much love and peace,