Wednesday, August 8, 2018

Looking Through the Cloud of Dementia to Find My Sweetheart

I haven't talked about the financial aspect of Jim's care in quite a while. Regular readers might remember that with the help of an Elder Law firm I was able to legally preserve some of my assets. I believe the government allows this so that spouses are not left impoverished. It took many months for a final decision from the government, but I received word recently that the application was approved. It still is expensive; my responsibility is $45,000/year. Medicaid picks up the balance. Private pay would have been $144,000/year. This amount would whittle down any retirement savings pretty quickly.



As I've mentioned before, Jim is incontinent. But as with other skills robbed by dementia, it usually is not an all or nothing; quite often it is intermittent with varying degrees of loss. He is completely incontinent of bowel. When he urinates, sometimes it is in his pull-up, sometimes in a wastebasket or sink, and recently it has been on his bed, his floor, on the door, in another person's room, closet etc. He knows that he has to go, but he has lost the ability to figure out where to relieve himself.

If I happen to be near him and sense what is about to happen, I can quickly grab a urinal, hold it for him and he willingly uses it. But obviously this covers only the portion of the day that I am there. His favorite New Balance sneakers were taking a beating. They were getting wet in the process, and I just couldn't keep up with keeping him in clean, dry sneakers.

Amazon to the rescue! I found these water shoes and ordered a pair. They're intended to be worn on the beach and/or in the water. They are light weight and easy to keep clean. I now have two pair. When one pair gets soiled, I hose it down in the shower; they dry pretty quickly. Problem solved!

I struggle with loneliness at times. Usually it occurs in the evening when I am home alone. I miss him so much. I miss the old Jim. The Jim of many years ago. The guy who made me laugh every day. The guy I could count on to know when I needed a little extra TLC or support. The thoughtful guy who turned every birthday and anniversary into a special celebration. Spoiled me rotten with thoughtful gifts, travels to new adventures, and snuggled close with an affection that left me knowing how lucky I was to have him in my life.

When life gave us one of those "little surprises" that we didn't count on, we could lean into each other for support, knowing that we would always be there for each other. God I miss him!

Dr. M. reminds me that it's OK to have and express these feelings. I can be hard on myself, thinking that I should be stronger and not give in to these feelings. But she reminds me that the feelings are real, and that it's OK, and I have a safe haven with her to express these feelings and work my way through. So that is what I do. I'm so grateful to have her in my life. As she says I "don't have to go through this journey alone". That is so comforting.

I also try hard to focus on the fact that I still have Jim. And I look hard every day to still find in him the essence of who he is. And indeed, it is still there.

This morning when I arrived, he was in his room, sitting on the edge of his bed, pretty much in a daze. He didn't have much of a response at all when I saw him. I discovered that he had not eaten breakfast (not willing to come to the table). I quickly found some fresh fruit, donuts, and lots of apple juice (they keep a great supply of beverages and snacks that are always available). He ate, and then drank a lot. I've noticed that he needs some encouragement to drink. He's obviously thirsty, because when I hand him the glass he chugs it right down. But yet he is losing the wherewithal to reach for the glass of beverage without a reminder. He drank 32 ounces of apple juice!

After, I helped him shower, shave, clean clothes and teeth brushed. He seemed to come around and was more responsive to my interactions.

I look for his beautiful brown eyes lighting up with recognition. I look for that beautiful smile he has when he looks at me. And I wait for that tender touch when he reaches for my hand or when he kisses me. That's when it all feels right again.

I've written before how he has very little speech. But yet there is still some comprehension. Hard to say how much, but he understands best if there are fewer distractions and not too much information at once.

Last weekend we were sitting in the open courtyard on a beautiful summer's morning. (The memory care unit is built around the courtyard.) We were pretty much by ourselves, so it was pretty quiet. I started talking about some memories of things we had done in the past. It was heartwarming to see his face light up with recognition when I talked about something he clearly remembered.

Jim has always had a fascination with airplanes. He actually took flying lessons when he was quite young, before we knew each other. We used to enjoy going to air shows together. I brought up the "Blue Devils" US military jet pilots. He immediately corrected me and said quietly "Blue Angels". Wow. Kind of blew me away.

Lisa, my hairdresser, has been coming every 4 weeks to cut Jim's hair. She gives him the best haircut ever, and he just loves her. When she came last week, as soon as Jim saw her his eyes lit up and he had the sweetest smile for her. Hugs were exchanged, and I thought about how lucky I am that Jim has all these caring, loving people in his life.

He has the same kind of reaction for Corrina, one of the activity leaders for the memory care unit. They adore each other. The unit is blessed with good hearted souls, willing to give of themselves for the most vulnerable among us. So very, very grateful.

Corrina brought in her dog the other day. Jim has always loved dogs! I have the sweetest picture of Jim and Corrina's dog snuggling close. So sweet! Once again, to see that spark in his eye, his whole body responding as he was bonding with man's best friend.

I recently read some of my older posts, back when things were so difficult for me and Jim. I'm reminded that the support I received from all of you really helped to see me through some very difficult times. I appreciate each one of you ❤️. Thanks for stopping by.

22 comments:

Sharon said...

Hi! Have wondered how you were doing.
I guess DH and I will have to go in a wreck or something before we are desperate for a nursing home. Only one of us could have any time at all under care.
Swim shoes - great thinking!
You are a good person, I know of people who just hang it up and basically abandon their loved ones.
Hugs!

DJan said...

I have an acquaintance who has early dementia, and he no longer can live by himself or drive, but he still comes on some of our hikes. He has stopped talking very much at all, and I see him get confused easily, but he's got some friends who take care of him and stick by him on the trail. I think of your husband often and wonder if they are experiencing the same kind of symptoms. I'm so glad you have found a way to take care of Jim without having to go bankrupt. I love you posts and look forward to them.

AWmom said...

So glad you are hanging in there!Glad you have someone to talk to! Last month we lost my mother in law !She had dementia and a hosts of problems! The home could never get her to eat but she ate for family so we set up a schedule and one of us would always be there to feed her even if she didn’t know us !Her faced brightened when she heard music or we showed pictures of the grandkids!They always said talk she is listening to the end! Hope you continue to have joyful moments like we did! God Bless You!

Anonymous said...

Carole - as usual, your posts are informative for me. I am the one with the 87 year old parents whose mother has dementia. My father is caring for her at home. Would you be willing to share the name of the Elder Law Firm that you used? My sister and I are very concerned that my father will be left indigent if he needs to put my mother in dementia care. I appreciate any information you can provide. If you want to contact me privately with the name, reply to my comment and we will figure out a way to communicate. Thank you in advance.

Tehachap said...

So very glad to see you in my inbox. Kudos to you for finding those shoes! We've been to Oregon, Washington state and back home recently. We took an Amtrak train and booked roomettes so we could get some rest at night. It worked out rather well with only minor problems here and there. We had a couple of instances of getting lost, but managed to find our way again. Hang in there, as we all do, in our own way. Bless you and Jim and know you remain in my thoughts and prayers. Thank you for keeping in touch. I do look forward to your posts.

Arkansas Patti said...

So good to hear from you again and get an update on Jim. While the expense is scary, the treatment he is getting seems so far and above what one expects these days.
So happy that you have those brief moments when he comes forth and rewards you with a smile or look.

Joared said...

What a touching description you’ve written. I’m so pleased you still can enjoy moments with Jim and him with you. Ca imagine your surprise at the Angels/Devils correction. Sometimes more is understood than we may realize, even if only briefly. So glad you have the Dr. for your emotional support. We care here, too.

Carole said...

Oh Sharon, it's so good to hear from you. I too, wondered how you were doing.

There are not good options in this country to manage and provide long term care for those who are in need. I also think about how lucky Jim and I are that we are at Iroquois; their memory care unit is top notch with terrific, caring and loving staff.

Sending hugs right back!

Carole said...

Thanks DJan for sharing the story about your friend. I'm glad for your friend that he has this amazing support that allows him to still be a part of your hiking group.

There are so many different kinds of dementia, and while there are many similarities, you'll find differences in rates of progression as well as different symptoms.

One early symptom of Jim's was fatigue. I remember wondering why he no longer was able to sustain what should have been an easy hike around a small lake. Later I learned that his fatigue was one of the symptoms of his dementia.

Thanks for stopping by DJan; always look forward to hearing from you :-)

Carole said...

Thanks AWmom for sharing this with me. So sorry for your recent loss, but so glad that you were able to spend the time with her and "keep talking". What a joy you and family provided for her during the most difficult time of her life.

When I first realized that Jim had dementia I read everything I could get my hands on, so that I could better understand what he was going through. Plus, I trusted my intuitive nature to just keep loving him and helping him to feel loved. My instincts were right. And the best part is that I receive so much in return from him. I am blessed.

Carole said...

The firm I used was Hancock Estabrook. They are local, so not sure if that will help. If you have an Office of the Aging in your county, they may be able to provide you with the name of a local attorney who specializes in elder law. If you wish to contact me by email: carpentercarole@me.com

Wishing you and your family well, as you traverse this difficult journey.

Carole said...

Hi Carol! Your trip sounds wonderful! The roomettes I am sure were worth it to be able to get some good sleep at night. Traveling is so much fun, but it does provide some additional challenges as we age.

Thanks for your kind words Carol.

Carole said...

Yes, that is a big scary number! No one plans on getting dementia. And certainly it's hard to imagine that anyone could really plan for this kind of expense. My cost of living is lower these days, thanks to selling the "big house" and downsizing by a lot. Lower taxes help too.

Thanks for stopping by Patti. (By the way, I failed the test from your last post! HaHa)

Carole said...

Hi JoAnn. I know that as a professional in the field of speech/language, you have an even greater appreciation than I do for the subtleties of communication. I've learned a lot over the last few years; some from reading and a lot from experience.

And I'm still learning! This morning I said "take a seat". He said "what's that?" I then said "sit down". And he did! I do very little directing of him, and pretty much let our time together just flow. But sometimes it becomes important to have him follow my direction, such as when he needs to be changed etc. I'm learning that using simple, basic words work the best.

Anonymous said...

Thank you for the information. My parents are in Florida. I will pass along the Office of the Aging idea to my father. Thank you again.

Jabberwalky08 said...

Appreciating the details on practical care in later stages - coaxing, water shoes, the works - we're not there yet, but I'll have a calm voice and the r ight words when the time comes, (I hope!!).
Thanks so much for writing, Carole.

Carole said...

It's heartwarming to be able to share with others what I've learned and discovered on this journey.

The other day I cringed as I overheard the husband of one of the residents arguing with his wife about the details of a recollection. So hard on both of them! I don't know him well enough to pass along my observations about "going with the flow as long as it's not hurting anyone" and "don't try to reason with someone who is incapable of reasoning", but hopefully will have such an opportunity in the near future.

Your 24/7 caregiving for J has provided you an expertise on the journey no one wants to travel. Hang in there Jabberwalky, and thanks for your comment.

Javanut021 said...

Hello! First of all a huge gasp after reading the financial costs of care. Wow. I’m glad though, that you have been able to find a place that has good care. So glad that there are times of reminiscing and remembering. A center nearby at which my daughter volunteered recently got a resident bunny! It’s a huge hit! All the best to you and Jim, D

Carole said...

Hi Javanut! Yes, the expense is shocking, to say the least. The fact that the care is so good gives me such peace of mind.

A bunny! What a great idea! Occasionally there are trained therapy dogs that come to visit. Always a hit! The dogs are very docile, and the residents just love them.

Thanks for stopping by :-)

Dr Sock said...

Carole, my mom passed away this week, and I have travelled back to my home town to be with family. So your words about remembering Jim as he used to be hit me very hard today. Our memories are made of what we do today; we cannot know whether there will be a tomorrow.

Jude

Carole said...

Oh Jude, I am so sorry for your loss. Creating memories...you are right; that is what we are doing every single day. May the cherished memories of your mom bring you solace in your time of mourning. Take good care.

Mage said...

I learn from you. Thank you so much for writing, for sharing your feelings too.