Saturday, March 9, 2019

Where Do I Begin....

It's been quite a while since I last posted. It's been a difficult time, as I witness the further progression of Jim's dementia. If you are interested in reading the specifics of his progression, I recently updated the second page of my blog at this link.

His mobility has declined quite a bit. He now needs a wheelchair most of the time. Occasionally he is able to use a walker for short distances, but someone must be near him to make sure he doesn't fall. Physical reasons have been ruled out as an explanation for this decline. Thyroid functioning is OK, blood pressure is fine, there is no infection, and he is not on any medication that could contribute to this decline. The consensus from the professionals is that the decline in his mobility  is a progression of his dementia.

He is receiving physical therapy to optimize the strength in his legs. For as long as possible, the goal is to maintain his ability to stand. This helps the staff providing care for him, for things such as changing his brief, dressing him, showering him and transferring him from chair to bed. I actually go to the PT sessions with him. What we have discovered is that he responds well to me when directions are given 😊. For example, when the PT tells him to do something (stand up or sit down for example), Jim stares into space as if not hearing or making a connection. The minute he hears my voice, he turns to me and smiles and then proceeds to do the best he can to follow the direction. Wow! How sweet is that!!!

So in the middle of all this sorrow, I still have my bright spots! I'm so thankful that I can still "find" him. He's still in there and I still know how to reach him. But I must temper my bragging with the reality that there are times when even my voice does not always get a response.

Sometimes you can tell that he is trying to do something, but his body is not cooperating. The brain is connected to every single thing that our body does. So activity such as walking will only happen if the brain is firing on all cylinders, making that connection to get the nerves and muscles to do what they are supposed to do.

The last few weeks he has needed a lot of help with eating and drinking. It used to be that I simply had to cut up his food for him and encourage him to eat/drink. Now, if left alone, he may not eat or drink at all. I've also seen him pick up an empty spoon and put it in his mouth. At times he would try to use the handle of a fork trying to suck on it (thinking it was a straw?).  Occasionally he will try to eat non-edible items, such as styrofoam plate, clothing protector, napkin.

His weight is stable, so I know that he is getting enough to eat, even when I am not there. I'm always there for lunch and I stay the afternoon. This gives me the opportunity to make sure he gets enough food and fluids. Dehydration is very important to avoid. It can lead to constipation, low blood pressure, and with Jim's history of kidney stones he needs to stay well hydrated to avoid any reoccurrence.

Jim is almost mute. On rare occasion there may be a word or two. But his sweet smile and beautiful brown eyes light up when he sees me. At least most of the time. There are times when he seems to be looking right through me. It's heartbreaking. But so far, that happens with me only once in a while. He still hugs me, kisses me and caresses me. Every day that he is still able to respond this way, I am truly grateful.

His decline over the last few months has been very hard for me. My saving grace is that Jim is content. I think back to when he was in the middle stages of dementia where he had a dramatic change in his personality and behavior.  He was so very angry, upset, inconsolable, and I was afraid for his safety as well as mine. But now that he has declined further into the later stage of dementia, his old personality is back! The Jim I married was a guy who was quiet, soft spoken, kind and loving. And he is back.

I know that the day will come when he is no longer able to respond when he sees me. Dr. M. reminds me that he will still be in there, and that I will find other ways to connect with him. This has been a very difficult journey for both of us. Our love for each other sustains both of us. And I'm honored to be with him and see him through this next stage of his life.

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You'll notice that comments pop up on a separate page. I think this will resolve the issue and allow me to respond to comments from readers. Thanks for stopping by. I so appreciate each of you sharing this journey with me.



14 comments:

Tehachap said...

So good to see your post. Comforting to know that although Jim's speech is diminished, he's (as you say) back to his old, quiet, caring self. I read your posts and think about my daughter-in-law's mother, 'J' who has Alzheimer's. They're trying to care for her at home and have someone coming in from 10-1 each day. I know it's just a matter of time before she'll need more care than what can be given at home. I graduated from high school with J and am saddened to see this. Not an easy time and the burden of care on my daughter-in-law who works full time and has her own family to care for, is very heavy. She attends support group meetings, though, which is good. Blessings to you and Jim...

Carole said...

Tehachap - so good to hear from you. Sorry to hear about your DIL’s mother. Such a hard journey for everyone! Finding support is so important. Otherwise it is easy to lose your way and become isolated.

Tom said...

I had to laugh because it seems, unlike your husband, my wife ignores me when I ask her to do something, but does pay attention to strangers when they give her advice. All kidding aside, I'm glad you can still make the connection ... that's what's important.

Friko said...

This is all so inevitable, it brings back memories which I try very hard to push away. After nearly two years I am beginning to concentrate on the many happy years together, as I am sure you will too, eventually. But cherish him while you can. Towards the end I was thinking it would be better for the patient to die but now I wish I had had just a little more time together.

I have a friend going through the same trauma (her husband has Parkinson’s which has caused something like dementia). Sometimes she cannot cope, is getting to the end of her strength. She looks after him at home but I think she too may have to make drastic changes soon. How sad it all is.

Carole said...

Tom, Ha ha! Yes, I remember those days before dementia when there was selective hearing at times. And yes, staying in the moment, appreciating what I have and trying to not get too far ahead of myself.

Carole said...

Friko, I sometimes feel selfish for wanting him to hang on as long as possible for my sake. If he were to weigh in on all of this, I like to think that he would be understanding of my emotional turmoil.

I believe that once he is gone, I too will be able to focus on the joy we shared together. I’m counting on repression of the hard times. I remember when you went through all of this. Hard to believe it has been two years! Always in our hearts, as they say.

Arkansas Patti said...

This has been such a long trip for you both and I marvel at how you and he have managed to keep alive that spark in his eye and sweet smile. That has to be what makes all this at least bearable. I am so sorry he is losing ground but know you are doing everything in your power to make each day for the both of you as good as possible. Stay strong Carole and enjoy those good moments. Keeping you both in my prayers.

Carole said...

Thanks Patti for your kind words. As I watch other residents living there, I observe that far too many have little contact with family members. So sad for these folks. I truly appreciate the importance of my time spent there, for him AND for me. Yes, the light in his eyes and his beautiful smile will be with me always.

DJan said...

I read your post, went to see the updated page, and read all the comments but still can find no words to relay to you my feelings about all this. It seems hard, but when you describe his face and eyes lighting up when he recognizes you, it all feels worth it. I hope that will continue for a long time. Sending you both my sincere best wishes.

Carole said...

That means a lot to me DJan. Our love will see us through this. When Jim’s mother developed dementia, I’ll never forget the loving care he provided. It truly revealed the kind of man he is. Thoughtful, tender and full of compassion. That’s the guy I married! How lucky am I!?

Kay said...

Oh Carole, I'm so sorry for all you are going through. I am in awe of your strength and determination. Jim is so very blessed to have you watching over him.

Carole said...

Kay- He fell yesterday! Long story, but he is OK. When I received the call I panicked a bit, immediately went there to see for myself that he was OK. There is a fierce protective mechanism that comes to the surface when I feel he is in jeopardy. Similar I’m guessing to how a parent responds when their child is in danger. All borne out of a deep love of course, which is what will see us through.

Good to hear from you. I enjoy reading about your adventures on your blog.

Joared said...

Good to know how you’re okay. Glad he’s able to respond to the sound of your voice still most of the time.

Carole said...

Good to hear from you JoAnne. The changes are always shocking to me. They shouldn’t be, but it takes me a bit to adjust to our new normal. I’m grateful I am still able to find him inside his body that is failing him. When he speaks, I can see the tremendous effort he is making to try to communicate. I do my best to respond reassuringly to the neologisms.