Any Landing

I worked at a military base for 29 years. They repaired military aircraft. One of the sayings I heard was, “Any landing you can walk away from is a good landing.”
I was reminded of that saying today as I guided my husband to the part of the couch where he sits to take his meals. When I prop him up with pillows so that he can reach his tray to eat he often begins to lean to his right. Slowly but surely he is eating from an awkward angle, doesn’t say a word, just keeps on trying to eat. After months and months of doing this same thing over and over I finally came to the bright idea that if he sat in the right hand corner of the sofa the problem would be fixed. Voila! Any landing you can walk away from is a good landing. Once more I saw the wisdom of accepting circumstances and being blind to obvious solutions and finding it hilariously funny once recognized. Then I wonder how many other processes I am complicating when a simple “move to a corner” will fix the problem.
 
Navigating a wheelchair offers ample opportunities to use the landing saying. Most offices have wheelchairs and all doorways are wide enough to negotiate but the darn entrance is raised up just enough to catch the wheelchair in mid-roll. My poor husband has been shaken, jostled, and frightened by those moments. I do so well with helping him out of the car and getting him into the wheel chair. I learned to pull the wheelchair backwards over obvious obstacles. I did not learn how to get up enough steam to make it over some of the higher obstacles. Therefore I begin with a high degree of confidence and end snagged on the door jamb. Robert experiences being flung around in a wheelchair, being pulled backwards with all the energy I can muster and then snagging with a jolt on the darn golden colored door thingy. Robert loses his cool. It could be the sheer terror of almost being thrown out of the wheelchair.  Every time someone eventually comes and helps pull my husband over the door jam.  It is rarely graceful and often embarrassing but we make it.  I think about the landing we just walked away from. How scary it must feel to be moving backwards with your seat beginning to tilt you backwards and suddenly realizing the person pulling you is out of control. I don’t bring up the “any landing…” saying at those times. I stay quiet. I got smarts real good.

I am clumsy. I trip over a shadow. It is an inherited family trait. There is no clear reason why I do not fall at least once every day. I am exhausted from caregiving and exhausted from thinking and I move like a character in an old black and white picture show. I trip, stumble, catch my foot on a towel or a shoestring or a blank space on the floor that looked like something to me. This goes on all day. The two of us undoubtedly were meant to be together. Robert watches me from the corner of his eyes. I wonder what he is thinking. I never know because he has perfected the phrase, “Oh nothing, dear!” He has smarts real good too.

Most of our days now we are flying by the seat of our pants. We have never been on this path before. Each day begins with a look around and questions about how he feels and how I feel and what’s for breakfast. Each change in symptoms has a meaning but we do not know what kind of a meaning. So we go along as best we can with the day ahead and our minds half in the  drama and half on the t.v. We rarely discuss the future. Heck, we do not have a clue about the future. What, when, where and how are speculations that hang in the air. They annoy us. There is no rhyme nor reason to the pattern of symptoms or to the remarkably good days when it seems all is well. We fly along together dodging first one thing and then the other. I daydream and he sits staring ahead with the FTD stare. His face is in a grimace. He seems in pain but he is not in pain. We land. I help him get up and out and he goes off to take a nap. He stumbles. I gasp. He is in bed. I trip over a shoe while grabbing a chair to stay upright. Whew, I think as I narrowly escape a cat barreling by me chasing one of the “unseen” things in our house. The cats see them. I try to get out of the way. All of us, the entire family are just grateful to be here and to keep it simple. Real simple. “Any landing you can walk away from is a good landing.”

Flying the friendly skies of FTD. It is not for the faint of heart!

Pay Attention

Time flies except when it doesn't. Time in the world of a caregiver is often irrelevant. Days flow into weeks and weeks flow into months. I lose track of when symptoms began or when they ended or who we saw and on what date. Every day is a Saturday. It is an old habit from work. Saturday was a day off and I was home. I am home most of the time now. My mind calls all days Saturday.This creates the curious feeling of being a visitor in the coastal town where we live. I go out for groceries or church or almost anywhere here and I am out of step with the general culture of the working folks and more in step with the visitors. They are on holiday. I may not be on holiday but my frame of reference is from a holiday mindset. Every day is a week-end day. 

It is amazing how small the world can become as the caregiving process continues. I am not sure how this is changing me but I do know that I am changing. I do not have the points of reference I had with the community at large. I don't hear the ongoing stories of friends at AA or at church. I move in and out like an outlier showing up for supplies and a brief conversation with one or two people. It is amazing how comfortable I feel in this isolation. 

In the past month my husband's health has been playing havoc with his body. It is his mind. The doctors cannot find an actual cause for the variety of symptoms that are coming and going. This is the slow progression that could be the fast progression. This disease affects the brain cells, shrinks areas of the brain that tell the body what to do or not to do. No one has an idea how long it will be before a vital function is cut off from brain central. Currently we are experiencing forays of symptoms much like guerilla warfare. 

Symptoms rush in and then out again. His blood pressure is going up and down. The other part of this awful disease is that he is less and less able to identify his symptoms accurately. The immutable truth is that there are no cures. Hopefully we can treat symptoms to provide comfort. Hopefully he will be spared a long, lingering process. Hopefully I will be spared that also. But I am ready to stay the course and my husband is proving to be a brave man facing daily difficulties without complaint. I am learning from him.

Pay attention. We never know when we may be in the presence of people who unexpectedly become part of our learning. I am beginning to understand that precious life and wisdom dwells in every situation as in every soul. Like snowflakes no two of us are the same. There is always a teaching to be found. Pay attention.

Sharing The Burden

I blog on caregiving.com as well as here and for different reasons. Tonight I did a blog on the caregiving site that I am posting here also. My husband has Frontal Temporal Dementia and I am his sole caregiver. The caregiving.com site is an amazing way to share with other caregiver's and to learn from them. If you are a caregiver or know someone who is a caregiver I recommend finding caregiving.com and using the information to your best advantage. Without further ado....

Sharing The Burden

I was just in a chat when someone came on who expressed that she was exhausted from trying to be stronger than she felt. As so often happens in chats or when talking with friends over coffee, a comment will go straight to the heart of the matter. That lovely woman's comment spoke my truth. I don't think I would have known how to put it. She did and I am grateful for her.
There are days when I look around and I wrestle with the feeling that I am a four year old trying to be a twenty year old. I am much older than twenty but you get my point. Wow! Just as I typed that last sentence I got a picture of the National Geographic pictures of women in other countries walking miles to the nearest watering hole and then back home with the water weighing them down on the return journey. I'll bet if we could talk together we would all instantly understand the demands we each have on our lives and we would each say we have no idea how we meet those demands because we often feel far too little to take the next step or make the next decision. I am getting goose bumps. I am having one small memory after the other come to the front of my mind as I think of the times I knew without a doubt I was being carried by a loving God and He was making the decisions through me because I simply could not make them. I was too little. I was too overwhelmed. I was too hurt and sad and frightened of the future. I wanted to be little and have someone step in and take over.
There are many well meaning suggestions for resting and taking care of ourselves and they are all important and do make a difference. I just think there are days when the depth of sadness and grief supersedes all our good intentions. I think what I call overwhelming is often the reality of this journey. It is what Denise has identified as the journey that has only one ending and we are walking that journey, staying busy with all the daily tasks, exhausting ourselves with all that caregiving demands of us. We are walking the journey with our eyes so focused on the moment and then we look up and we clear our heads of the demands on us and we see the ending. We gasp at the ache inside and the sorrow pouring into our hearts. We momentarily fall to our emotional knees. I think this is when we experience the exhaustion of being stronger than we feel.
If we are fortunate enough to have a friend to share with, a group to talk with and this amazing site to use every single day we struggle as we stand up from our emotional knees, we bond together, we meet each other in that tender and vulnerable place and we share the burden. Imagine, if you will, the bond that binds us to each other and the miraculous understanding that on the days when I am strong, I can share some of that with you when you are feeling weak and when I am weak you will share your strength with me. Imagine that bond binding together hundreds of souls who are loving and providing care for someone. Imagine the love and energy of that love pouring out from us into the world of caregiving. We keep what we have by giving it away. This is a deep truth that I have been taught by others. In our weakness we find our strength. We share our burdens. I am deeply humbled and blessed by all of you. Thank you.

 

Just Keep Swimming!

O.K. Beginning two months or so ago the scenarios I am going to mention began impacting the world of myself and my husband who has FTD. If anyone were to ask him, he may know these events but would not relate to them on an emotional level unless he was directly impacted, meaning if the kinds of food he wants are not in the house or the Roku will not function properly. Outside of that he may "know" but he does not relate. I, however, am experiencing it, feeling it, working through it and looking for the humor. Believe me! I am looking for the humor.
As a reminder, I am the full-time and sole caregiver of my 70 year old husband who has been diagnosed with Frontal Temporal Degeneration (Dementia).
About two months ago my left knee began hurting at the back of the knee. I have had knee replacement surgery and blood clots so when I say my knee hurt it was painful to the max. As if that were not enough I twisted that knee trying to help my husband up off the floor. The pain at that moment flashed down to the bottom of feet and up to the bottom of my buttocks. I thought I was going to pass out. I could not put my left foot down and apply pressure without shooting pain. There's more but I will cut to the chase. I was referred to an orthopedic doctor/surgeon. They did an MRI and said chances were good that I could have arthroscopic surgery for a meniscus tear. Phew! NOT! When the surgeon had time to review the MRI thoroughly he determined that nothing less than a total knee replacement would work. Too much junk in my knee and that was the truth, the whole truth and nothing but the truth.
During this time my husband was at a plateau with his FTD.  He could get up and down under his own power, most of the time. Remember: Food! Roku! Happy man!
In no particular order I am going to fill in the blanks on what has happened since I was told I need a total knee replacement. If I don't do it this way I will never get it told.

1. Diagnosis: Need total left knee replacement
2. Gland on right side of my face became swollen and I began feeling run down and possibly with a low grade fever.
3. I was finding new and really old lady ways to walk and spare the knee and was void of any concerns about my appearance.
4. I forgot to complete my time sheets for the money I get paid for looking after my husband. It is not much money but it comes in handy. I had it spent in my mind and had not signed and submitted it in reality.  The money would come in the next paycheck, in two weeks. Big gulp! Electricity was due.
5. I freaked inside about the money and finally got up the nerve to ask my brother to loan me the money and catch him up later.
6. He wanted to do it bank to bank. I wanted western union. He did it bank to bank. It took four days for the money to be available. I still had to borrow money to buy food. Borrow from a neighbor. Oh the shame of it all!
7. I return to the doctor for the follow-up appointment where I learn about the knee replacement. I get a shot in my knee to help with pain.
8. I wanted surgery to be on June 1. Because of that shot to the knee June 1 was too early. I chose August 1.
9. Ongoing battle with the house and keeping it livable, i.e. clean! Losing the battle. Losing it mentally because I have clutter everywhere, my knee hurts and...
10. I get a sinus infection. It is why my gland was swollen. I thought it would go away. No! I went to the doctor and got two shots, antibiotics, Duke's magic mouthwash and a bunch of "to do regularly" stuff.
11. We have an old model t.v. It is the size of a small VW. I used the Roku adapter to use the older t.v. and receive Roku. My husband lost the t.v. remote and the Roku remote. This began the plaintive call of the "FTD Husband", "Did you find the remotes yet?" Repeat this to yourself every fifteen minutes until your own eyeballs fall out and you will understand.
12. We find the remotes! Yes!
13. Roku will not work on the t.v. we had hooked it to prior to the loss of the remotes. It won't work.
14. Plaintive alternative call of the FTD spouse, "Did you fix Roku?"
15. I bought a large, more modern, off brand t.v. from the pawn shop. It had HDMI meaning easy set up and I could not beat the price. I lugged it into the living room, hooked up HDMI and Roku took a deep breath and lived again.
16. Leaving out the times we lost the remotes again and the interventions I made to show him how to use the remotes which is when I remind him that pointing the remote at the ceiling is aborting his original purpose, and looking for something to watch...not counting any of that...tonight, after about a full week of glorious newer t.v. experience, I glance up at the t.v. that works like a dream and smoke is coming out the back and the intoxicating smell of electrical smoke filled my nostrils.
17. I freak out! One, the t.v. could have burnt the house down. Two, what will I do tomorrow when my husband wakes up and Roku is working, if we had a t.v. to watch it on. I can't afford a t.v. from a real store. Tomorrow looms in front of me as I scramble for my thoughts and my ideas. Nope. Empty head.
18. My husband has been on a plateau of relative good days. This week and in the snap of a finger, or so it seems, he has taken a turn into a slump. Typical of the FTD and always surprising to the caregiver. What a mean old disease! He is weak and his walking is hesitant and his legs are stiff and he is running a low grade fever. I consider a visit to the hospital. I make an appointment with his doctor for tomorrow.
19. Tomorrow I take my son to child support court (he does not have a car) and I take my husband to the doctor and I do what I can to make the Roku work with the old t.v. for now and I try to remember to take my antibiotics and other stuff.

When Finding Nemo first came out I began receiving phone calls from friends. They told me I must see Finding Nemo because I was in the movie. I did not have a clue what a Nemo was or how I could be in the movie. I watched the movie and knew immediately that I was Dory! Since that time I have learned to embrace the Dory part of me. In that spirit I titled this blog: Just keep swimming!
Caregiving requires the spirit of a Dory! Just keep swimming! Just keep swimming!
I gotta go. I am thinking of killing at least two of my four cats before I turn in for the morning! They glance my way with scornful looks. They are not afraid! Just keep swimming! Just keep swimming!

Non-Traditiional Easter

A PREVALENT PERCEPTION



THE TRUTH OF THE MATTER
 
“We are closest to Christ when sharing the world’s misery. Think you Jesus came to remove our pains? Wherever did you get that notion? The Lord came, not to remove our suffering, but to show us the way through it to the glory beyond. We can overcome our travails. That is the promise of the cross.”
― Stephen R. Lawhead



ALL OR NOTHING

“Love is beautiful, but it is also terrible—terrible in its determination to allow nothing blemished or unworthy to remain in the beloved”…”He will never be content until he makes me what he is determined that I ought to be.” Pg. 179  From Hind's Feet on High Places


LOVE LIFTED ME

It is better to go stumbling, and weeping, and crawling like a worm along the way of love, than to give up and choose some other way.

Hannah Hurnard

 





 

The Night

The night has ceased to be a time of closure for me. Day and night cycle through the 24 hours meant to hold them and I recognize the passing but take little notice. Every thing I read says this one thing will be the death of me. It was going to be cigarettes. It was going to be drugs and alcohol and then a violent husband and now maybe my weight or the food I eat or the stresses of life. Lord knows, as far as I can tell I have been living with the threat of death over my head for years now yet here I sit writing this blog. I am intelligent enough to know that not sleeping in any defined, normal way does affect me. I just wonder, after all these years and miles and miles of living if it is going to be the end of me. I am weary of thinking about it and pondering the idea of why I don't sleep at night. I think I want to just accept it for now. I think I am in the mood to just let me be me and accept the consequences. It is about all I can do right at this moment. The nights when I do get good sleep make the point for sleeping well. But, for now, I am what I am and I know, from long experience with myself, that this too shall pass. I am 65 years old. I suppose if I die tomorrow it could be said that I died an early death. How do you figure out that kind of statement? Death does seem to have a great deal of leeway. I am overweight and I don't sleep well and there is a crap load of stress in my life. All of that is true. But I am well loved and God fills my spirit with joy and I love deeply. I love people and the sound of their voices and their stories about themselves. I love animals and I love being allowed the honor of being the care giver for my husband and I love life but I am not married to the idea of it. Does that sound weird? I don't think so or at least not for myself. I don't think it sounds weird at all. I am not suicidal. I want for people I love to find their way to loving and being loved. I got sober and clean 33 years ago and there has been very little time that I have actually been physically healthy. Is that the ruler by which I measure myself? I was not particularly healthy as a child. I had malaria in Africa and bacillary dysentery and I believe my immune system was compromised but I can't prove it and I can't see as it really matters at this point. I haven't smoked in forever. I don't drink or do drugs. I know there are so many choices I could be making that would be so much better for me and my health. The energy and the drive to make those choices does not exist in me right now and I am just going to accept that about myself for now. Lord knows, life changes on a dime. I am open to change but I do not plan to go chasing it down the street to catch up with it. And I know ya gotta be wondering what on earth has gotten into me and that this is proof that staying up at night is a problem. But I don't think it is proof of that at all. I think I just need to speak my truth and for some ridiculous compulsion choose to share it as if folks have nothing else to do but read my stuff. But maybe my stuff and my sharing it will resonate with someone and that matters. So, I don't know how much time I have on this earth and neither do any one of you. I do know this though, if any of you are left standing when I go, please make sure they play "Sitting On The Dock Of The Bay" at my service. I do love me some Otis Redding.

This Girl Ain't Playing!

 

OUCH!

$%^&*(*

I found this clip art in honor of my knee. My left knee hurts. It has been hurting for several weeks. I am finished with it hurting. It is not finished hurting. I am a child in an adult body. "Make it stop!" is what I want to scream at the doctor. They are so professional. They are clinical. I want hugs and a profuse outpouring of comforting phrases. I want a lollipop and a shot. No, I want two shots and a couple of pills. No, I want two shots, a couple of pills, eight ounces of good whiskey and a joint the size of a large cigar. Did I mention that my knee hurts? I hobble along like the 65 year old woman I am and I use the carts in the stores and I learned to use that darn cane and I am in pain. No way around it and I will tell anyone who will listen, as a matter of fact I do tell anyone who will listen, that my knee is only surpassed in pain by the kidney stone I had a few years ago. A kidney stone would make me forget this knee and I do not want that thought to go to God's ears. Shush! That was a between me and you thought.

Tomorrow I find out what the MRI shows and we will make a plan. I DON'T WANT A PLAN!! I want the pain to go away. No! I will not try to think about pretty things or go to my happy place and I refuse to utter platitudes nor will I take back the desire for whiskey and dope. Of course I will not drink or smoke a joint but I am not going to lie and say the thought doesn't have a certain comfort to it. I am not that mature. I am not that evolved. I cannot say, in the face of ongoing pain, day after day, "Oh, me? No! I do not think about using substances that may cause me to lose my umpteen years of sobriety." I am not that girl! I am this girl. If it were not for the grace of God and the fear of another bunch of years of destroying my life looming before me you can bet your sweet bippy I would avail myself of those substances. Yes and Yes! But I won't, of course, act on the thought. I may share the thought with people who will not look at me as if I have lost all of my hard won sobriety even if I did not use a drug or a drink. Honestly, all I can think at this moment is, " A pox on your smugness!" And guess what! This is me without a single substance in me. No aspirin or puny little pain pill, NOTHING!

So, I'm just sayin', MY FREAKING KNEE HURTS!

It is unpopular today to express personal moments with such abandonment. Certainly not if it smells even a little bit like you belong on the right or the left. Well, guess freaking what again! My hurting, pain in my every day life knee is on the left side and the knee that is on the right side is feeling real good so draw your own conclusions.

Call this a vent! Call this a little, tiny bit of my insanity showing around the edges! I personally don't give an owl's hoot what you call it or me. Make my knee stop hurting and you will be my new best friend!