Saturday, July 7, 2018

Every day I can't wait to see his expression....

and I'm never disappointed.

One of the most shocking changes to Jim has been his dramatic loss lost of speech over a relatively short period of time. He still has an occasional word or two, and if there is a particularly charged moment, there may be several words. But for the most part he is very, very quiet.

Eight months ago I can remember his conversation with the police officer, angrily telling him that I had to go, that I did not belong in our home. Speaking clearly in full sentences. Communicating so clearly. Wow. So much has transpired since that time.

Fast forward to today. Jim is settled in his care home, surrounded with staff who love him and watch out for him when I cannot be there.

The best part of my day is when I arrive on the unit, go in search of him, and then watch for his expression when he first sees me. His face lights up, he smiles, and his eyes say it all. He holds out his arms to me and then when we meet we hug, and then we kiss, and all is well as I feel the tender touch of his arms around me.

Staff seem to delight in watching. I see them pause in what they are doing, turning their eyes toward Jim. Like me, they seem to be just waiting to see his face light up in recognition when I enter the unit.

Oh, how lucky I am. But at the same time it is bitter sweet as I know it won't last forever. That day will come when he may not know me or recognize me, or be able to respond in the way he does now. I don't know if I'll ever be ready for that day.

But I don't focus on those thoughts. Instead I treasure and memorize his smile, his eyes, his gentle touch as he sees me and holds me. I will carry that with me forever.

The nursing home organized an antique car show. It was held outside on the grounds, which are absolutely beautiful this time of year. I was a little nervous about Jim going. How would he react being outside his safe haven? Would he see the cars and want to drive one? Would it be too confusing or upsetting for him? My greatest concern was that somehow he would react in a way that would result in an upset for him.

But, at the same time I did not want to deprive him of a chance to see all these cars. He always was a car nut, and subscribed to a couple of car magazines. So, with Corrina on one of his arms and me on the other, we toured the grounds, stopping to look at each of these beautiful cars. At one point he pointed to a car and said "Studebaker!". I was shocked. Where did that come from? Then we passed a Chevelle and he said "I had one of those." And he did! Wow, just wow.

The other day when he was walking behind one of the speech therapists (who happens to be young and beautiful) he pointed to her and said "Smokin!" 😊

My observation is that when there is something or someone that elicits a very visceral response, this is when he is most likely to be able to produce some speech. I don't fully understand how this all works in the brain. As my friend Amy said "It's amazing how it's all in there, but just kinda stuck."

I'm feeling settled in my new place. Pictures and art work are actually hung on the walls. It really feels like home sweet home to me. Jim is here with me if not physically, certainly in spirit. So many things to help me still feel still so connected to him; the treasured photos, the pieces of art work we chose together, the furniture we picked out a few years ago, and of course the piano!

The story behind the piano is pretty darn sweet. I played quite well all the way through high school. Jim and I have always been big fans of classical music, and this is what I was trained to play. 30 years ago, about a week before Christmas he took a day off from work and unknown to me had a piano delivered to our house! He put it in the den, closed the door and put up a sign that said "Do Not Enter! Wrapping in Progress!" On Christmas morning we opened the door to the den, and there it was. A beautiful piano with a big red bow wrapped around it. In the piano bench I found my classical music I had trained on in high school.

I'll never forget that wonderful memory. It's a reflection of his sweet, loving heart. Dementia has been  responsible for some really rough times over the last few years. But as time passes, the sweetness of his spirit in the present far outweigh the difficulty we had in the past. And for that I am so grateful.


Marty Damon said...

What a lovely post. And more evidence of what a good man he is. It sounds as though you've found peace with this latest turn of life.

Valerie said...

A wonderful story to end this post. What a very considerate man your husband was and still is. He might not be able to convey in words but it is still there inside him. Lovely to see your post, I often wonder how things are with you.

Carole said...

Yes, you are right; I have found peace at this point in our lives. I've had amazing support along the way from Dr. M, Dr. S., and the incredibly kind readers of my blog.

Thanks for stopping by Marty.

Carole said...

I once read that when we communicate with others, only a small percentage of the meaning is found from the spoken word. The rest is inferred from the inflection of the voice and the non-verbal communication from the body.

This is so true! Jim uses many facial expressions to express what is on his mind. Usually when he is in a joking mood, we all laugh at his playfulness from his funny expressions. And while his speech is very limited, if he says a non-sensical word, I listen for the inflection, watch his facial expression, and it all comes together :-)

Thanks for stopping by Valerie.

DJan said...

Thank you so much for this heartfelt wonderful post, Carole. I have tears in my eyes and am so glad to hear from you, and this sweet juxtaposition of then and now is perfect. You have brightened my day so much more than you know! :-)

Tehachap said...

Good morning. So very happy to see you in my inbox and know that you and Jim are still with us and carrying on. He is such a thoughtful the gift of that piano was. I'm so very happy that he does still recognize you. Bittersweet, for sure, but like you say, I'll take what I can each and every day. Blessings to you both... carol

Carole said...

Thanks DJan. When I look back at the last few years when Jim was still at home, I wonder how I survived. But I did of course. I think that one of my coping mechanisms is to focus on the positive, both from the past and in the present. I try to not think too much about the difficult times. So grateful for support from my friends, including by blog friends to help me get through this time in my life.

Carole said...

Thanks for your sweet comment Carol. I'm grateful for the guidance I've had from others along the way. And the positive attitude is important too. It helps me through the very sad times when I realize that I'm slowly losing him to this dreaded disease. But it does me no good to get caught up in this kind of thinking for too long. Dr. M. is so skilled and caring, and helps me process the grief that of course is a part of this journey.

I'm grateful for the "piano story", and all the other sweet memories from the past that I have. It is with deep gratitude that I can travel this journey without bitterness, and instead focus on the positives of the here and now.

Sharon said...

Lovely post, and most welcome. Is good to see.

Carole said...

Hi Sharon. So good to hear from you. Sure miss your blog posts, but understand that sometimes it's for the best. Please do take care :-)

Arkansas Patti said...

What a sweet post and welcome as I often think of you two and wonder how you are doing. His way of greeting you has to make your day--it made mine.

Carole said...

Does it ever! The love in his eyes says it all. And if I'm lucky I hear the words too :-)

Joared said...

What a lovely account of current experiences and past memories. I delighted in the piano story. Wonder how he responds to various music pieces — often a sensory pathway that reaches stored experiences in ways nothing else does. As for his occasional verbal productions, often that will occur if something is highly emotionally loaded in some way. Gad he could enjoy the cars ... and appreciate young attractiveness still apparently.

Your response to a comment above is ever so true about the importance nonverbal communication. We rely unconsciously on these messages more than most people realize. They all become especially important when interacting with someone outside the so-called normal range — and then there are those lacking in nonverbal skills. Our digital systems blogging, tweets, texts, Facebook can be more prone to misunderstandings — even a phone call that’s audio only can be missing some of the visual cues on which we depend.

I’m sure your appreciation and understanding of all this, even though you probably weren’t perfect practicing what needed to occur, has had a great deal to do with easing life for Jim and you, too, during this life challenge. The nonverbal aspects will continue to be very important in the future.

Carole said...

Thanks for your lovely comment JoAnn. I remember that you are a professional in the area of speech/communication.

As far as music, he still enjoys it very much. There is an area where folks can watch a DVD; there are several to choose from. One of our favorites is a concert by Andre Rieu at Radio City Music Hall. The beautiful production with the orchestra/singers captures our attention and provides a nice low key alternative.

I'm counting on the nonverbal aspects of communication to see us through on this journey. So grateful that I understand and appreciate how important it is.

Thanks so much for your insight JoAnn. It helps to reinforce my focus on the nonverbal aspects of communicating with him. The power of communication will see us through this journey.

Javanut021 said...

Hello! I recently found your blog. Your writing is so eloquent! Sometimes when the world seems like it’s against you, you need a piece like this to realize how thankful you should be! So thank you! I especially loved the piano story. All the best, D

Carole said...

Hi D. Thanks for stopping by. The piano story is especially poignant, as it gives a glimpse into the real Jim.

I definitely have my sad moments. But I've learned that it's ok to feel sad. And then move on, remembering and focusing on what Jim and I still have: each other. It's not always easy to be thankful or grateful, but I agree, I think all of us remember to count our blessings when we hear of another's heartache.

Joared said...

Am reminded, of the visual sense with photos, individual as opposed to group eventually, but I think you’ve said you’ve long since been offering those.

Anonymous said...

I've not commented in a while but your posts always touches my heart. You are so very blessed to have that special kind of romantic love that we see portrayed in the different media. some of us have never gotten that but I am so joyful that you did and it still exists in our disposable world. Your love transcends time and to quote "I love thee with a love I seemed to lose
With my lost saints. I love thee with the breath,
Smiles, tears, of all my life; and, if God choose,
I shall but love thee better after death." Elizabeth Barrett Browning's How do I love Thee -N

Carole said...

Oh, thank you so much N for sharing that beautiful quote.

I'm fortunate that Jim and I had such a strong connection throughout our lives together. And yes, romance was a source of great pleasure for both of us.

But in fairness to others, I'm hoping that readers don't think we had a perfect marriage; I don't know of a perfect marriage! But I think that the strength of our love was based on mutual respect, kindness, thoughtfulness toward each other. And when there is conflict, doing our best to try to resolve it with an empathic understanding towards the other person.

Good to hear from you N. Thanks for stopping by.

troutbirder said...

How special. I hope we can be similar some day. For now lost words make coherent speech increasingly difficult and answering the same questions repeatedly tests my patience to no end. I wish I could do better. Sometimes my "teacher voice comes out to my great chagrin...:(

Carole said...

Don't be too hard on yourself Ray. You are a caregiver 24/7/365 for your wife. That's a challenge for anyone! Know that you are doing the best that you can under very difficult circumstances, and that is all that you can do.

I'm sending you kindness and caring your way, knowing that your's is a difficult situation. Take care Ray, and thanks for stopping by.

Dr Sock said...

Carol, it is so sweet to hear that you and Jim greet each other with a hug and a kiss, and take such joy in each other’s presence — even with all the difficult times and so much that has been lost. I have a very fond memory from the last time I saw my grandma, who had dementia. It was about a year before she passed away and at that time she was in wheelchair and no longer had any spoken language. I am sure she did not know exactly who I was, but something about me was familiar to her. She took my hand in hers and pressed it against her heart, while smiling into my eyes. That was just a brief moment in the visit, and during most of the visit, she did not seem very aware of my mom, my aunt or me. But I will always cherish that one special moment.


Carole said...

Hi Jude. Thanks for sharing this with me. Such a sweet, heartfelt moment for you and your grandma.

I wish I had a recording of Jim's voice, prior to all of this. But I don't, so I rely on my memory of hearing his say things; normal friendly conversation, planning for our next trip, even just talking about our day together.

Take care Jude, and thanks for stopping by.

troutbirder said...

Glad to catch up and read your doing well. We're still at home and functioning reasonably well. Last weekend was out first 911 middle of night wandering episode. Lost in the wood brought out the sheriffs department, the ambulance and some neighbors. Everything but the volunteer fire dept. who were on standby. This week I'm into home security systems. Life goes on....

Carole said...

Oh Ray, I so relate to what you are going through. It's terrifying, isn't it. We had a home security system too. And I also purchased an alarm to put at bedside, that would sound if Jim left the bedroom at night. (Sensor would pick up movement at the doorway to the bedroom.) I wanted the opportunity to head him off at the pass, so to speak.

I hope you are gathering the support you need as you and your wife travel this arduous journey together. Just remember, don't ever second guess whatever decisions you make for the two of you. Only YOU know the all the circumstances and what is going to be best for you and your wife.

Take care Ray, and thanks so much for stopping by.