Category Archives: Uncategorized

“The Long And Winding Road”

The long and winding road that leads to your door

Will never disappear

I’ve seen that road before it always leads me here

Leads me to your door.                                           Paul McCartney, John Lennon

LiveLong

How’s she doing? Will she ever get back to her old self?

Everyone seams to ask me those question’s and more. I tell them, she is doing fine and no, she will NEVER be who she use to be. I use to tell them what they wanted to hear but not anymore. Only the closest to me, will I give the most answers too. And that is because they ask how I am doing. They know My life is also never going to be what it use to be. I have become “short” and “ A Matter of Fact” with most everybody anymore.

The ironic part is that it doesn’t bother me. What I say is the truth. Nothing will be “Sugar Coated” and that is what they will get.

I can see the changes daily. And yes, as long as you treat that person with love and care, they grow. Amazing feats can be accomplished. She helps me with everything. She can also see when I am down and want to know what is bothering me. It fills my heart when she does that.

I watch her when I am work on my computer. I have camera’s set around the house to more or less make sure she doesn’t get hurt or also if someone uninvited shows up at the door. I call her around 2 to 3 times a day to make sure she is okey and how she is doing. She is always in a good mood. All I can say is that maybe she had a great childhood to be so good nature’d. Never any bitterness in her.

It has been approximately two and a half years now since my wife’s Aneurysm. There is still a long road to travel, but in my opinion, it is not that long anymore.

To the unconditional love of the Woman I adore.

routine: noun

  1. regular, unvarying, habitual………… Do it a thousand times. The same way every time.

Keep on keeping on. Laugh with your loved one and make them feel like they are loved, safe and important. Every day is a new day. Smile when you wake up and thank the one above for everything. Make my mind strong, my body strong, and my soul strong, in your name Jesus. Amen.

 

Hasta la próxima.

 

 

Find a Support Group

If you could only see the way she loves me maybe you would understand
Why I feel this way about our love and what I must do
If you could only see how blue her eyes can be when she says                        Tonic

Healing

The following is something I ran across and want to put in this particular blog.

A very helpful support group site.

http://seriousillness.org/kscity/programs/index.php?catego=52#

 

The Caregiver Journey – Pathways to an authentic and fulfilling life

by Marty Beilin

 

Shock dulls the senses.  In all of our lives that moment came when a doctor spoke words that let us know an accident or illness or stroke had forever changed the life of our beloved partner.  It probably took several days or even many weeks for the scope of the disability and the prognosis to sink in.  What would take longer for our mind to grasp, often much longer “ months and years “ is how and the extent to which our lives, too, would be transformed.  The fear, anger, and despair no doubt felt at times by our ill/disabled spouse would wash over us as well.

A few years ago I wrote in Mainstay, the Well Spouse® Association newsletter that membership in Well Spouse cannot make us whole again.  But this association of spousal caregivers can help us confront the realities of our lives with hope, not resignation.  But how?  It is so easy to become overwhelmed by the stress of long-term caregiving.  Even the most buoyant personality surely must be weighed down witnessing one’s mate’s progressive loss of health, function, and mobility. Where is the hope?

Sharing our stories helps well spouses connect with each other and lessens anxiety.  There is comfort in knowing that I am not alone.  That others have gone down this road before and survived!

But the Well Spouse® Association’s mission is not simply to help spousal caregivers just cope with their difficult situation.  While the empathy generated by sharing personal stories is valuable in and of itself, our aim should be to create for ourselves nothing less than an authentic life —  one not defined solely or even in the greater part by our spouse’s medical condition.   In any healthy marriage or committed relationship, it is important that each partner take time to pursue his own interests and give expression to her talents and dreams.  This should also hold true in a marriage where one spouse is ill.

While we all want to be excellent caregivers for our partners, to provide good care we must first care for ourselves.  To neglect our own well-being is to risk burnout, and then we neither serve our partners or ourselves very well.

In her inspirational book, Mainstay, Maggie Strong suggested that three progressive stages typify a caregiver’s life.  This caregiver journey can serve as a powerful metaphor for how we can re-center our lives.

The Heroic Stage

The diagnosis is in, and a productive panic energizes you and family members.  You want to learn as much as you can about your spouse’s illness or disability.   Doctors and other experts are consulted.  You read everything you can on the subject.   You receive encouragement from family and co-workers, and many offers of help.

Optimism often abounds during the heroic stage.  You will help your spouse heal, recover, walk, get well. Often there is real improvement; sometimes even complete recovery.  But over time when there is little improvement or decline sets in, hope slowly fades and optimism turns to despair.  Friends and family members may drift away.  Help now is most likely provided by paid aides.  Denial may keep the caregiving spouse working towards a cure that is not possible. The heroic stage comes to an end as you come to terms with the reality of your spouse’s condition and prognosis.

Ambivalence

Long-term caregiving sets up debilitating internal conflicts.  On the one hand, you want to support and care for your partner.  It’s the right and moral thing to do. You are motivated by love, or a sense of duty, or societal expectations.  At the same time you feel physically exhausted.  Financial concerns mount.  You may have to quit your job.  Intimacy is difficult or impossible.  You don’t see a future.  You want to get out.

The ambivalence stage of the caregiver journey pockmarks the landscape with intermittent (or, in many cases, constant) feelings of fear, anger, sadness and resentment.  Many caregivers need medication to manage clinical depression.  To avoid caregiver burnout, caregivers will devise ways to compartmentalize their lives.   But stress commonly undermines the best coping strategies.

Emotional instability and uncertainty are the hallmarks of this stage.  Sadly, caregivers can get mired in the ambivalence stage for quite a long period of time.  This stage comes to an end when the instability becomes so untenable that one suffers total burnout or, much more positively, the caregiver commits to a desire to go beyond coping and makes real changes in her or his life and one’s approach to caregiving and the marital relationship itself.

The New Normal

In this third stage, balance, resolution, and inspiration empower caregivers to live much more fulfilling lives.  You recognize and come to terms with the long-term nature of your situation.  But you no longer put off or set aside your desire to pursue your own interests and dreams

.

To read more, visit:  http://seriousillness.org/kscity/programs/index.php?catego=52#

 

 

To the unconditional love of the Woman I adore.

 

 

routine: noun

  1. regular, unvarying, habitual………… Do it a thousand times. The same way every time.

 

Keep on keeping on. Laugh with your loved one and make them feel like they are loved, safe and important. Every day is a new day. Smile when you wake up and thank the one above for everything. Make my mind strong, my body strong, and my soul strong, in your name Jesus. Amen.

 

Hasta la próxima.

Chill-axin with my Shero

There goes my hero
Watch him as he goes
There goes my hero
He’s ordinary                       Dave Grohl

My Hero, She’s extraordinary! My wife is my “Shero” Every day she gets stronger. I just get blown away with her wit and reactions. No doubt she is a different person from whom I married. I also have changed along with her. She helps me around the house now. I still initiate and start the project, but she helps me finish it now.

Warmer days are coming soon and she can’t wait to get outside and enjoy the warmth of the sun.

If anyone is ready these, and is interested in helping with the blog or just wants to ask questions, please subscribe. Not only do I want to help others who really didn’t get the help they needed, but I am hoping to get answers to my questions and heart ache as well.

See you around. Lao Tzu

To the unconditional love of the Woman I adore.

routine: noun

  1. regular, unvarying, habitual………… Do it a thousand times. The same way every time.

Keep on keeping on. Laugh with your loved one and make them feel like they are loved, safe and important. Every day is a new day. Smile when you wake up and thank the one above for everything. Make my mind strong, my body strong, and my soul strong, in your name Jesus. Amen.

Hasta la próxima.

 

 

Menow

Surely I could tell
When I sleep tonight
A dream will call
And raise it’s head in majesty
Dividing all my energy
To the meeting of your love  
                                  Anderson / Howe / Wakeman / Bruford

Lots of times there is just nothing on my mind. I don’t know why I cry! I am not sad. I feel safe. I am loved. I guess maybe I am just emotional? I get tired easily, so I try to take a nap a couple times a day. The best thing about having a Cerebral Brain Aneurysm is that I don’t worry as much as I use too. I like who I am now. Another neat thing is that I use my left hand as much, if not more than my right hand. Even if my short term memory is not the best, there are some things that I will never forget. I remember everything, except sometimes it is kinda different. I am so thankful. I am blessed by God, my family, and my friends.

 

 

To the unconditional love of the Woman I adore.

routine: noun

  1. regular, unvarying, habitual………… Do it a thousand times. The same way every time.

 

Keep on keeping on. Laugh with your loved one and make them feel like they are loved, safe and important. Every day is a new day. Smile when you wake up and thank the one above for everything. Make my mind strong, my body strong, and my soul strong, in your name Jesus. Amen.

 

Hasta la próxima.

 

 

Compassion

 You know I need you,                 Like the flower needs the rain I need you,                                Guess I’ll start it all again You know I need you,                        Like the winter needs the spring You know I need you,                  I need you.                                        Gerry Beckley

Today was my wife’s visit to the gynecologist, and also for her yearly mammogram. This will be the second visit since her aneurysm in June of 2012. I have to say it still felt kinda weird helping her undress and get her woman parts checked out. She did awesome and did not feel embarrassed at all. I just hope I can keep this up.

I thought I would share some great stuff I read lately. There are some amazing web sites out there for research and comfort. Here are a few comments I found on:

http://www.brainline.org/content/2013/08/the-most-helpful-thing-someone-has-done-for-me-since-my-brain-injury.html

Understanding that I sometimes don’t know that I am asking the same question again and don’t remember something said already. More importantly, I am not doing these things on purpose. Gentle reminders often help a lot. Also, knowing that even though I may function like “normal” folks, I am a person with a TBI.

Dec 16th, 2013 6:30pm

My loving son put up inspirational phrases around the house to remind me how important it is to take care of myself and how much I’m loved. So whenever I open the refrigerator, pantry door or a cupboard, there is a message reminding me of these things. It gets me through the difficult times.

Dec 13th, 2013 1:26pm

Always tried to make me laugh and smile so that I could feel happiness in my life. Vera

Dec 12th, 2013 1:07pm

My wife never stopped loving me even though my children stepped back confused my parents wont talk to me and even my church abandoned me. I became someone else and yet she loves me. I owe her everything.

Dec 2nd, 2013 7:07am

My family has been there every step of the way. They have rallied me when I don’t want to work at recovery. They have hugged me, let me cry on their shoulders, cooked, cleaned, did laundry and shopping for me. Then they helped me do these things. 14 months later they drive me to appointments and take me shopping. They never batted an eye, that’s unconditional love! Sheila

Nov 25th, 2013 6:49pm

Making me realize what I’m fighting for which in turn made me work harder in therapy to achieve my goals

Nov 25th, 2013 4:50am

Allowed me to repeat myself of forgotten stuff id already said or dine without shaming

Nov 24th, 2013 3:31pm

Offered me hope and believed in me.

Nov 15th, 2013 6:24pm

took me outside and pushed me to go out for walked as exercise. put up with my behavior changes, tough me to accept the new me. understood my injury when i couldn’t and helped me research it till i finally understood the cause of my re- occurrence symptoms. I still cry because I miss me so much so very much.

Nov 13th, 2013 8:12am

reading all the positive post on here that have had such good experiences since their brain injury. Unfortunately my story isn’t that great: since my brain aneurysm in Oct 2006 I’ve lost my husband of 27 years, my job as a veterinary manager, my memory, my relationship with my child, my home, many friends and I’ve become a lonely woman living alone with my animals. Thank God for my critters…they accept me the way I am and give me great comfort…. Just NEVER knew that life could change like this in an instant…from one minute to the other….and to get back to the original question there’s nothing special anybody (human) has done for my since my brain injury …. unless my pets count….they love me the way I am and give me the will to live

Nov 12th, 2013 5:33pm

Allowing me to tell the same story over and over without reminding me I had already told them.

Nov 12th, 2013 3:38pm

I just go about my day going nowhere. I don’t think or feel that I’ve major probs from my 2 TBI’s but when I think about it my short-term memory is appalling. Also Discontinuity ( gaps in memory and awareness and unawareness syndrome ) scares me. I’ll just keep climbing the mountain and go do something like getting a job.

Nov 7th, 2013 7:02pm

Called me and invited me to social events when I felt like isolating……Learned about brain injuries and made sure the social events were ones I could handle – not loud places with too many people.

Aug 31st, 2013 12:01pm

My husband took care of me…

Aug 29th, 2013 5:23pm

Been patient,understanding & have stayed with me still today.

Aug 29th, 2013 11:09am

This happened to my very good friend….All I do is to be there for her whenever she calls if I can..She is a very sweet person…

Aug 29th, 2013 7:52am

FORGIVING ME WHEN I FORGET A MEETING…GET LOST.. OR DON’T REMEMBER WHO THEY ARE, FORGET THE WORD I’M TRYING TO USE OR MESS UP SPELLING A WORD

Aug 29th, 2013 1:14am

Loved me when I couldn’t love me.

Aug 28th, 2013 11:26pm

treated me like I\’m a person of worth not brain damaged…..

Aug 28th, 2013 10:37pm

Transported me to Doc appts. near, far and way far Went to doctor\’s appt.\’s Asked questions of doctors Stayed vigilant and concerned helping me remember Helped me keep organized Showed a lot of patience Vigilant while I was in the hospital Vigilant in prayer Supported my Mother, Father, brothers and sister Gave suggestions to me never pushed them on me allowing me to make the decision Spending time Helped me with paper work Included me in her family Let be me My best friend Never gave up on me Luved me just the same before and after Thank you Carol Kevin

Aug 28th, 2013 10:26pm

My husband stayed married to me. Melody

Aug 28th, 2013 9:29pm

Excepting me for who I am today. And asking questions that you really want my honest answer to. BELINDA

Aug 28th, 2013 5:07pm

Doesn’t get annoyed when I ask to help remember things!

Aug 28th, 2013 4:45pm

All of the above and beyond and of course the unconditional love.

Aug 28th, 2013 4:29pm

Drove me where I wanted to go.

Aug 28th, 2013 1:00pm

routine: noun

1. regular, unvarying, habitual………… Do it a thousand times. The same way every time.

Keep on keeping on. Laugh with your loved one and make them feel like they are loved, safe and important. Every day is a new day. Smile when you wake up and thank the one above for everything. Make my mind strong, my body strong, and my soul strong, in your name Jesus. Amen.

Hasta la próxima.

I want to be there!

Oh little one, bring your love here
Oh little one, I need you near
Oh little one, but don’t live in fear of the future
‘Cause I will always be there

                                                                      Daniel Seraphine and David Wolinski

 

Holidays and special days are just regular days for me now. At first it made me sad, but now I seem to be fine with it. My wife will probably never remember my birthday, when we met, wedding, honeymoon, and what probably makes me the saddest, is our anniversary. But still, I keep thinking and making sure she is happy and to never live in fear of the future or the present. I always want to be there, with her.

We look at pictures constantly. She will stop on one picture and remember. Sometimes she will know for sure and maybe 15 minutes later, not quite sure. She is getting really good at faking the memories. Pretending she knows. We laugh a little and I tell her the story behind the picture and then she remembers and finishes the story. Yes, there is hope every day.

I talked to a good friend today. His mother has dementia. We can relate to the same problems and situations. It is so important to talk to others in the same situation as you, if you can. Sad, but awesome that one of my best friends is on the same page with me.

Here is a story a friend sent to me………………So True!

TRUE LOVE (A Doctor’s note)

It was approximately 8.30 a.m. on a busy morning when an elderly gentleman in his eighties arrived to have stitches removed from his thumb. He stated that he was in a hurry as he had an appointment at 9.00 a.m. I took his vital signs and had him take a seat. I knew it would take more than an hour before someone would be able to attend to him. I saw him check his watch anxiously for the time and decided to evaluate his wound since I was not busy with another patient. On examination, the wound was well healed. Hence, I talked to one of the doctors to get the supplies to remove his sutures and redress his wound. We began to engage in a conversation while I was taking care of his wound. I asked him if he had another doctor’s appointment later as he was in such a hurry. The gentleman told me no and said that he needed to go to the nursing home to have breakfast with his wife. I inquired about her health. He told me that she had been in the nursing home for a while as she was a victim of Alzheimer’s disease. I probed further and asked if she would be upset if he was slightly late. He replied that she no longer knew who he was and she had not been able to recognize him since five years ago. I asked him in surprise, “And you still go every morning, even though she doesn’t know who you are?” He smiled as he patted my hand and said, “She doesn’t know me, but I still know who she is.” I had to hold back my tears as he left. I had goose bumps on my arm, and I thought, “That is the kind of love I want in my life.” True love is neither physical nor romantic.

 

That is how I feel about my wife. Can you say that about your loved one? I also pray it lasts forever. It is never easy to deal with.

routine: noun

1.  regular, unvarying, habitual………… Do it a thousand times. The same way every time.

 

Keep on keeping on. Laugh with your loved one and make them feel like they are loved, safe and important. Every day is a new day. Smile when you wake up and thank the one above for everything. Make my mind strong, my body strong, and my soul strong, in your name Jesus. Amen.

 

Hasta la próxima.

 

Typical TBI day!

Years of trying to keep myself free
Now I find that I’m down on my knees
I kept hiding the feeling I had
Locked away every day, Lonesome and sad
When I’m with you girl, the fear in me leaves
To be in your world is all that I dream
When I walk away you waltz into me
Softly, Slowly                                   Darius Rucker & Hootie and the Blowfish

 

My youngest daughter is one of my “main” day caregivers. She has been my greatest asset since bringing my wife home earlier this year from the Rehabilitation Institute. Her love for humanity is overwhelming to me. The following is from one of her journal entries. I want to thank her for letting me read this, and share it with you. 

9am: Wake April up, Tell her the date. Help April get out of bed, but have April walk over to her dresser to pick out her own pants and socks to wear- have her put them on herself. (She might need help putting right sock on, if so help her as little as you can- she can do it!) April will need your assistance in helping her take off her shirt, and snapping her bra for her, as well as helping her put on a new shirt- always start with her right arm first. April can apply her own deodorant. Follow April into the master bathroom, she will assist her own self in the toilet room- when she leaves, remind her to wash her hands, and then proceed to ask her to brush her teeth- she can do all of this by herself. After teeth are brushed, take out her comb (in 2nd drawer in the middle) and have her brush her own hair. Then walk her back out into the bedroom area and have her pull up the sheets on the bed and make it look nice.

930am: You need to figure out what you want April to have for breakfast. Then trick April by asking her if she will make you breakfast (She will tell you she is not hungry, if she knows she is making breakfast for herself) She knows her way around the kitchen, if she needs help, she will ask you- but stay by her side the entire time!! After she makes breakfast for herself, have her put all main items away and anything dirty into the sink. Grab the plate and follow her into the living room, she will sit on the leather beige love seat. Put the dark brown love seat pillow behind her back and hot pink table tray on her lap- put down her plate of food so she can enjoy her breakfast. After she eats give April her pills – one by one- ask her what each pill is, tell her if she doesn’t know. After she gets done eating, ask her if she remembers what the date is. (Repeat this question throughout the day) When done with breakfast have her come back into the kitchen and wipe down the counters if there is any mess from making breakfast and have her wash her dirty dishes and put them away. (She will need to wash them with a rag and not the soup dispenser that is in the sink) After she is done cleaning- she will go back into the living room and watch The Kelly and Michael Show while her stomach digest her food. (She loves that show) After the show is over mute the TV. Your choice if you want to turn on music or not. (If you leave the TV on she will get distracted and want to watch it)

11am: Have her read you something, either a couple pages out of a book or magazine that is lying around the house. Play a board game with her, have her add and subtract and multiply numbers. There is a stack of paper money- pretend you are going shopping. Have her pull out the money that each “item” that you want cost- at the end of your shopping spree, have her add up your total amount that you have spent. Anything creative that you think of, that would be fun to expand April’s mental well-being. Make sure April is mentally consumed for at least 45 minutes to an hour. Make sure she is drinking plenty of water during these exercises.

12-12:30pm: Exercise time!!! Start by stretching, take about 30 minutes just by having her stretch her arms and legs, have her sit on the floor (she will need help with sitting on the ground, and getting back up from the ground) help her stretch- do stretches together! She is more likely to keep stretching and doing stuff if she sees you do it too. After stretches have her to 40 crunches, and have her lift up her legs as high as she can off the floor – really work on that right leg, push her to her limits! Have her do air leg exercises. … Do three sets of 3 different leg “air” exercises. Then help her get up. Then hold both of her hands- facing her- let her follow your lead by taking steps side to side, back and forth, so on and so forth. Do arm exercises, and have her move her right arm and left leg simultaneously and same with her left arm and right leg. Do exercises that help with her eye-foot, eye-hand coordination. Make up different stuff to do! Have fun with this!!

This should last about an hour to an hour and a half. Make sure she is drinking plenty of water during these exercises.

1:30-2pm: Have her make you two lunches. Obviously you will need to assist her. You can’t just sit in the living room expecting her to be able to make you two lunches without your assistant. She will probably just want a light lunch, if she had a
good breakfast, but just all depends on how much you have worked her. While eating lunch (you can watch TV) Have April then clean up after lunch – wipe down counters and clean the dishes.

\After lunch April can play on her IPad- games, look at pictures, whatever she wants to do for about 30 or so minutes. … Then have April get up and do another activity by either going up and down the stairs 4-5 times or walk on the elliptical for 5-6 minutes. You will have to have training on how to put April on the elliptical and off before you do this activity. … After you get done doing these small activities, it should be around 4pm. If not and it’s 20 or so minutes before 4pm, just let April relax by watching some TV or playing on her IPad. … Throughout the day ask her questions and try to play the memory game-( nothing personal though) Ask her if she remembers your name- her children’s name, the date, the month, how old she is, what her address is, so on and so forth)

routine: noun

regular, unvarying, habitual………… “Do it a thousand times. The same way every time.”

I repeat myself when under stress, I repeat myself when under stress, I repeat myself when under stress,           “King Crimson”
Anyway, keep on keeping on. Laugh with your loved one and make them feel like they are loved, safe and important. Every day is a new day. Smile when you wake up and thank the one above for everything. Make my mind strong, my body strong, and my soul strong, in your name Jesus. Amen.

 

Hasta la próxima.

 

Daycare Surveillance from work

It’s times like these you learn to live again,

It’s times like these you give and give again

It’s times like these you learn to love again,

It’s times like these time and time again

                                                                                          Dave Grohl

 

I need to get my wife to try to do things on her own. I took a daily planner. Made copies of it, so I could have a “one day at a time” schedule left on the table for her to read and hopefully do. Not only will this help me, but give her something to give her self-worth.

What I am dealing with is that she thinks she is perfectly fine, and wonders why someone has to watch here. Yet, when you ask her the day, date, or even the year it is, she has no idea.

I had previously purchased a couple of cameras and placed them in certain areas of the house to get a panoramic view. My original reason was to keep an eye on the day caregiver to make sure I wasn’t getting ripped off or abusing my wife. Actually the later was more important. Anyway, the first time I did this was when my day caregiver could not make it, and I had a very important meeting at the office. Well I decided to go into work and tell my wife that I would call her and see how she was doing. When I got to work I immediately turned my computer on and got on the remote access to view. I thought, for the first time doing this, she did great. I had to call her a few times though. I could tell she was looking for something. I would call her and ask how she was doing. Where are you, she would ask. I am at work, I would reply. This happened probably at least 4 to 6 times. But still, I was happy with the results.

Even still, I need someone with her during the day. Just to keep her company. She does not change into clothes. Her pajamas are still on when I get home. She will sit and watch TV, or play with her IPad. She seems to have no desire to do anything. At least she can walk ok, go to the bathroom and at least stay hydrated. I am not sure when I will leave her alone. Maybe once a month or so? I need to just keep the faith and keep trying.

Anyway, keep on keeping on. Laugh with your loved one and make them feel like they are loved, safe and that nothing ever happened. Every day is a new day. Smile when you wake up and thank the one above us for everything. Make my mind strong, my body strong, and my soul strong, in your name Jesus. Amen.

Hasta la próxima.

 

 

Make Me Smile

I’m so happy that you love me
Life is lovely when you’re near me
Tell me you will stay, make me smile                              
James Pankow

There are days when you are caregiving and you just can’t help crying because you are so happy. Incredible break through days, only “You” will witness. I was getting my wife’s breakfast ready one morning and had a strange feeling. As I walked around the corner of the kitchen to the living room, she had gotten out of her wheelchair and was walking. She was getting ready to sit herself down on the couch. My heart dropped in horror at first, but then realized that my wife is starting to succeed. You have to remember that she has been in a wheelchair for about 8 months now.

From wheelchair to rehab.  From rehab to this. I was so proud of her. Dang, time for a celebration. Let’s go out to Nick and Jakes tonight and get something to eat. I would get her dressed, into her wheelchair and off we would go.

Ah, but she was doing so well, and yet she would cry. So frustrated. All you can do is stay calm, and positive. God will only give you as much as you can handle. No more. No less.

Ten months after her aneurysm, she was starting to understand that something had happened to her. Why am I not at work? I don’t get off until 5pm. What is wrong with me? The only thing I could think of was to have her repeat after me:

  1. I had a Brain Aneurysm.
  2. It was June 1st, 2012
  3. I am still recovering
  4. And I am doing awesome!   Thank you Lord!!!!

We would repeat this 10 times a day it seemed like. Her short term memory was completely gone.

One of the strangest things I remember, not really because I keep a journal, is that we were in the kitchen and she asked me when we were going home.  Now I have been reading and researching Traumatic Brain Injuries and similar and came up with this scenario. I know her very well and this is what I think she was saying. When are we going to heaven with God? I explained to her “not yet”! Let’s watch our children and grandchildren grow and for us to grow old as well. Sometimes I would look her straight in the eye’s to see where she is. I envy her when I do that. She has a certain peace about her.

She truly makes me smile.

 

Hasta la próxima.

It just takes time

If I could, I would wipe the tears from your eyes.                                                                                 But I can’t, because their mine.                                                                                                               And I’m lost, without, the touch of your hands.                                                                                     But soon, it will just take time.                                        Joe Alfers

One of the things, or should I say many of the things I had to do, is to make sure my wife keeps up with her regular medical doctor, her woman parts doctor, Rehabilitation doctor, etc…and dentist appointments.

Basically, to get them all up to date with her health, medications, new life and disability. She had to start all over with everything. It was like training your 2 year old child that weighed 130 pounds how to do the basic hygiene stuff all from the beginning. Not only is that difficult but just like a child, she will fight with you.

As I mentioned earlier, I created some simple “Excel” templates to help me organize myself to take care of her plus keep myself structured at home and work. I was on my own. Nobody was going to do this for me. I won’t go into detail on these items, but you are more than welcome to get an “.xls” or “.doc” file template from me later.  Some of the files were: Medications, Daily Schedule, Misc. Taxable, and Day Care Taxable. Anyway, just a few things that helped me along.

Helping her out of the “rental” hospital bed into her wheelchair. Going to the commode. Wiping, cleaning, bathing, dressing, etc….. She was completely helpless, paralyzed on her right side, and incoherent. This is what the hospital released to me because the insurance would not pay for any more hospital time, or acute rehabilitation time. Ah yes, thank you. But what can you do? There are a lot of people who will grab the bull by the horns and there are even more that won’t. I was one that took the responsibility. I know now, God knew that.

There are a lot of web sites on brain injuries, Dementia, Alzheimer’s, but not really how to deal with it on the caregiver’s side. Injury Groups, and chat sites didn’t really help either. I could not find anything that was as devastating as what this was. I am not saying that the others were not. I just couldn’t find anything. I finally ran into a couple people that had gone through the same situation as I. It was awesome to talk to these people and trade stories. First time I had laughed, and cried with someone in a long time. This was so important. And, so new to me. I was a loner, so to speak, and did not trust anyone.

I am going to keep these blogs short. Don’t want to bore you to death. As we travel though each day, one at a time, I realize that God works at “his” speed. Not ours! We live in a fast pace world. Everything is disposable it seems like. We want recovery now! Just like in the movies. But, reality suggests, that life is not a movie. We will not “snap” out of a coma and wonder why everyone is looking at us funny. Sad to say, but our life can change in the drop of a tater. Live life full, laugh, fart, have some wine and just have fun with your friends, family and lover.

Hasta la próxima.