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!

The Diversity of Perspective

My husband has a form of dementia. I am his full-time caregiver. I want to be his caregiver. It is not easy for either of us and it has been and will be a long journey. 

Recently I chose to join a few chat rooms at different sites. One is specific to his type of dementia. One is specifically for caregivers and one is the Mayo Clinic chat for caregivers and/or carees.

There are so many people facing incredible challenges as they care for family members. There are people caring for more than one family member in the same household. There are elderly people caring for their elderly spouse and adult children caring for elderly parents. There are carees who are easy to care for and there are those who are unbelievably difficult and dangerous to themselves and others.

Many caretaker chats are great places to get and share ideas of the practical nature. The help is invaluable.

There are also chats that become a safe place for people to vent, break down, ask questions on how to survive the tough job ahead and just generally come apart. 

One of the sites has a trained caregiver consultant in each chat. Tonight I learned from her an unbelievably freeing approach to how I feel about myself and about why I am caregiving and why I need to take care of myself. Not all caregivers see things from the same perspective. All caregivers present with the same frustrations, sorrows, exhaustion, and, concerns. 

Some believe in the use of medication to help control emotional symptoms. Others believe it is a cop out and argue for the whole health approach. Others wrestle with when it is important to make the right decision about long term care in a facility for their loved one. Still others just want to know when it can happen and yesterday is too late. No matter what I question about myself and our own situation there are a variety of options supported and championed by other caregivers. I find this diversity to be a safe place. I am not rejected for wondering when it will all be over and I can have a life again. I am not rejected if I want to place my loved one in a facility now or if I plan to wait. People ask questions and help each other to think through their own situations.

I know cyberspace can be a tool for much harm and evil but it can also be a tool for community and communal sharing with people thousands of miles away that I will never meet but share the same challenges and heartbreaks and successes and victories. 

I probably have at least 20 friends across this country that I have never met in person and probably never will meet in person and yet they know me inside and out and I know them. I met some of them when I was working from home and I have met others through the caregiver chat rooms. This is the new world we live in today. Connecting with others is becoming more fluid and diverse. 

I know the question could be asked about how I know these people are being real. I can't prove it in a court of law but I also cannot imagine why anyone would come into a care giving chat room and fake a painful story of caring for their mom who is ungrateful and difficult and ask how she can learn to manage that situation with her in a more positive way. Besides, if she was blowing smoke, the response she got from the trained counselor helped me immensely.

Like I said...diversity in perspective. Take what I need and leave the rest. My field of the experiences and insights of others has grown exponentially. I am grateful.