Who are the Grands?

They are 90 and 93, and they live each day like there is no tomorrow. Because there may not be. Their minds are not what they used to be and their bodies are breaking down bit by bit, but inside those old minds and bodies they are the same independent-minded young people that forged their own way in this world and made a good life for themselves. This is both a blessing and a challenge, as you'll see in the posts below. Welcome to our journey!

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Monday, March 24, 2014

The Grands will be Just Fine - When Caregivers Go on Vacation

Steve and I have had a trip planned to Tucson for months, but now that it's here I have a host of emotions about leaving the Grands for the week. They have been doing okay - not great, not terrible - and they have a wide safety net of people to help. But that didn't change the initial anxiety in me about being so far away. What if something happens while we're gone? I bought the trip insurance, but still. What if?

Everyone told me we need to go, I need to get away for a few days and not have the responsibilities always on my shoulders. But how do I let them go? How can I let go of the sweet faces that greet me when I open their door and smile? How do I let go when I know that little things happen all the time - they need something, Grandpa fell out of his chair, Grandma forgot to use her walker again and stumbled.

But God is good, and He gave me a wonderful team of people to be there for the Grands while I'm gone. Nita, my second mother, is there to stay with Lliam, and as an RN with a lifetime of experience in nursing I can't think of anyone better. She's undoubtedly better than me at coaching the Grands through the problems that occur. Then there is the staff at Bickford. Amazing people, amazing care. I couldn't possibly ask for more.

The best part of the Grands' care team is that Grandma and Grandpa know it, too. They did not have an ounce of anxiety about me leaving. They are so comfortable at Bickford and so confident in the care they receive that they were just fine. Flashback to nine months ago when I left for a few days, and it's a very different story. Grandma was extremely anxious when I left. She marked when I was coming back on her calendar, asking again and again what was going on. But not this time. That is a thrill for me, because it indicates to me that she knows that she has the help she needs. She feels secure and loved right where she's at. Wonderful, wonderful, wonderful!

So now I am sitting in sunny Arizona, the morning sun is already warm and inviting. My only responsibility now is to let go of the burden on my shoulders and relax. The Grands are going to be just fine while I'm gone.

Sunday, March 9, 2014

Victory!! The Grands Battle the Insurance Company and Win!

In 1990 the Grands purchased long-term care policies from a friend of theirs who worked for Union Bankers Insurance. The policies were for nursing home coverage because back then nursing homes were the only facilities that provided actual nursing care. Well, the evolution of nursing care has been vast and extensive, and today there are far more options available to seniors than institutionalized care at the glorified hospitals called nursing homes. Most companies, Union Bankers included, have broad enough definitions to cover assisted living facilities, too.

When the Grands moved into Bickford House last June, this was one of the first things I wanted to know from Union Bankers. The young woman I spoke with assured me that Union Bankers covered assisted living, too. Great! I scheduled a nurse to come out and assess the Grands for their insurance claim. Everything went swimmingly, and the nurse recommended that they needed care to the company. Great! I was told by a manager at Union Bankers that the Grands were approved for care. Great again!

Not so great. A week later I received another call from the same manager telling me that the facility did not qualify because it was not under the supervision of a doctor. Never mind that Bickford has a collaborative agreement with a nurse practitioner and that there is round-the-clock supervision by the RNs. Never mind that Union Bankers very loosely defines "doctor" in the contract as a "licensed healthcare practitioner" which could mean a nurse, nurse practitioner, or physician. Union Bankers had just decided on its own that Bickford didn't qualify.

I was shocked but I was also absolutely certain that this was not the end of the discussion. By this time, the Grands had been at Bickford for two months and were comfortable and getting settled. The manager callously informed me that I could move them to another facility. She suggested that I move them to a 'real' nursing home. So, I said, let me understand, you want them to give up their quality of life at Bickford and enter an institutionalized setting because of Union Banker's unjust assessment? I asked her if she had any idea what it was like to move elderly people, how difficult and psychologically traumatizing it was. She responded only by telling me that I would have to talk to the claims department.

This woman showed no humanity, no compassion, and no care. To her, these were just names on a piece of paper. How wrong, how wrong she was. The Grands are real people with real lives, real feelings, and real love in their hearts. These are my grandparents who raised me, gave me the only stability I ever knew, and loved me since the day I was born. My heart told me, how dare she treat them like names on a page? At the same time, my head told me that this was the way of the world.

That day I resolved that I would fight this company until the very end, until there was no fight left. That day began an eight month battle as I sent letters, made phone calls, sent more letters, resent letters that they "lost," followed up on phone calls, followed up again because they told they hadn't processed the appeal yet, followed up again and again and again. I quoted the policy to the company to show them that Bickford qualified. I involved the director of Bickford who made multiple phone calls and sent letters, too.

Finally, I was told no again and I filed a complaint with the Department of Insurance. Union Bankers persisted. They even gave the Department of Insurance the run-around. But that didn't last too long, because finally the Grands and I, the little fish in the big pond, had some muscle. If you are an insurance company, it's best not to mess with the Department of Insurance.

Still, more weeks passed. I felt like that little red fish, holding on for dear life and not knowing quite what the point was. I was feeling pretty despondent. Every day, Grandma asked about the insurance. Did you call them today?, she'd ask. Every single day.  I couldn't blame her - we were talking about a lot of money. Lots and lots of money that would really help them pay for their place. I knew how much it meant to all of us. I tried to be patient. I think I succeeded for the most part.

But I was tired, weary of the whole thing. This wasn't the only thing on my plate. I remained confident that we would win in the end, but I knew that it might last a lot longer. I knew that I might need to hire a lawyer and sue the company. I didn't want to do that, but I would if I had to. I had already talked to a lawyer here in town. I just wanted it to be over. I prayed, as I had prayed throughout this time. But this time I just it gave it up to God. I handed it all to Him. I knew that I was at the end of myself because I was just too weary. That was Wednesday.

Then, out of the blue, as these things always happen, I got the call. It was Friday afternoon. I answered the phone. At first, I had no idea who it was or what she wanted, but after a minute or so it became clear that this was a manager from the Grands' long-term care insurance company. It was the very same manager that had callously told me to put them in a nursing home. She was calling to inform me that the company had approved the Grands' claims. She repeated it several times in a tone of voice that said she couldn't believe it herself. She told me Union Bankers would start cutting the checks immediately. Immediately!!

Relief and joy and gratitude washed over me. Relief that I no longer bore the burden of this battle, joy that the Grands had experienced justice, and gratitude to God for all He has and is and will do for us. Woo hoo!!!

I went over to the Grands that night. I had them sit beside each other so I could tell them the amazing news! Grandma's jaw hit the ground and then she smiled. Then she laughed. She laughed and giggled in joy. Grandpa nodded his head and said, "Thank you, Lara. Thank you." Grandma sang "Thank you, God" and "Count your Blessings." The fight was over. And we won! We won!

Victory!!!! We did it! Grandma was once a Rosie the Riveter, so this seems appropriate:

Thursday, March 6, 2014

Why Caregivers Do What They Do

The last few weeks with the Grands have not been pretty. These weeks have been exhausting, depressing, irritating, and, well, you get the idea. I am at the point of caregiving where there is nothing left of me to give yet I keep giving. So I give from a space that I didn't know existed.

For the past few weeks, if it hasn't been one thing it has been another. Between Grandpa's symptoms and Grandma's dementia, I have had my hands very very full. It has brought me to the point where I cringe every time I think about all the things I have to do for them. Yet I am driven to continue to do these things by an insane hamster on a wheel inside my head. That hamster has been the only thing keeping me going, but some days I have been seriously considering having him assassinated.

Today, for instance, was a day when I had hoped to have some rest from the wearying tasks that are laid before me. But the hamster told me I had a job to do. I needed to make Grandpa some boxer shorts. Grandpa's waistline continues to expand because the toxins are building up in the spaces between his cells as his liver can no longer do its job properly. This symptom is called third spacing. It has caused Grandpa's waistline to go from a 40 to a 46 in four weeks while he loses weight everywhere else. His face is becoming more gaunt and his legs and arms are pencils, but his waist is ginormous.

There are no shorts big enough to fit him that can also be adjusted for his expanding midsection. So I went to the fabric store, picked out a pattern, found some material, bought the notions, and came home. And today I made him fully adjustable shorts.

I am proud to say that they are the perfect waist size, 46 inches, and they will expand out to 50 inches with the snaps I put on them. Even better, when we took them over to the Grands, they were thrilled. Grandpa said that he was going to show everyone his new shorts tomorrow (he was joking, of course). Steve said Grandpa might want to go to dinner in just his boxers tomorrow (hahaha).

But the proof will be in the pudding. I just hope they are easy for him to use and that they are comfortable. The snaps are snug so now I'm worried that he won't be able to get them undone. I'm worried that they won't fit him right. I only made him one pair just in case there's a problem.

But for now, for today, the Grands are thrilled that I made him that pair of shorts. Grandma was impressed with my handiwork. She may be blind in one eye so that she can't see all my mistakes, but it still means so much to me to hear her praise. Grandpa said he's going to get a special tag for them that say, "Made in America." Seeing them smile and knowing I've pleased them during this incredibly difficult time of their lives is the reason that hamster keeps on living.

Friday, February 28, 2014

Learning as I Go - Persistence, Patience, and Wisdom

If you have read any of my posts, you know that my grandpa has terminal cancer. He currently has cancer of the prostate, spine, colon, bladder, liver, and just recently it has spread to his brain. For the record, he also has a non-lethal skin cancer on his head. That's why he always wears a hat, no matter where he is. In this picture, we were at the Nutcracker ballet at the Coronado Theater in December. He was already sick, but none of us knew it.

Hospice stopped treatment on his head a few weeks ago because it was excruciatingly painful and it was not going to heal before he passes. Really, the sores on his head are the least of his problems. 

Over the past few days, however, my grandma has decided that his head needed to be treated again. She has kept telling me, "It's getting worse, it's getting worse." I reply, "Yes, the sores are bigger but that cancer cannot really hurt him." She would just shake her head at me in irritation and continue talking about how great his head was doing before we got hospice. Every day for the past week, Grandma has told me again how much better his head was doing before hospice, when the other wound care nurse was helping with it. And every day for the past week, I have told Grandma that we stopped treating his head because it was extremely painful and it wasn't going to be cured. And every day, she would say the same thing to me again. The Bickford nurses and the hospice nurse have all told her the same thing. But Grandma has persisted, complaining that no one listens to her. 

After being ignored for almost a week, Grandma took matters into her own hands. She has no medication for his head in their apartment, but she had large bandages that she began putting on his head. I noticed the first pad Wednesday morning. I asked Grandma, and she claimed the nurse had done it. I said that it was going to be incredibly painful to take it off. She claimed that it would be fine if they just used some vaseline on it. Well, that afternoon the hospice nurse had to pull it off and it was excruciatingly painful, as predicted. We talked to Grandma about it. Grandma was very angry and claimed that he needed to have his head treated and it didn't hurt that much if they did it right. 

The next day, Thursday, there was another pad. The Bickford nurse told me that she had pulled one off and that when she had come in a few hours later Grandma had already put another pad on his head. We left it on until Friday because no one wanted to be the bad guy and pull it off. 

Today Lydia, brave Lydia, took on the challenge on Friday. She went in with the intent of taking the pad off Grandpa's head, convincing Grandma to accept that his head could not be treated, and taking all of the pads out of the room. She spent an hour in there talking with them, and by the end Grandma had accepted it. She let Lydia take the pads out even though she was very nervous about it. 

By this evening, Grandma was already complaining again that no one listens to her. She had forgotten most of what Lydia had told her. All she remembered was that no one had done it her way. She told me she doesn't like hospice because they won't listen to her. She told me that she knows best because she's the one with Grandpa all the time. She believes that she knows better than all the doctors and nurses combined because Grandpa belongs to her. The complaining hasn't ceased, but at least I know Grandpa's head won't hurt anymore. 

Monday, February 24, 2014

What My Dog Taught Me about Joys and Disappointments

You've all heard about Benny/Denny/Quinnie, my little dachshund/spaniel mix that the Grands adore. He has three names because I named him Quinnie but the Grands can't remember that. Grandma calls him Benny and Grandpa calls him Denny. He answers to all of it, thankfully.

It is a mutual affection because Benny/Denny/Quinnie loves them, too. He dances by the door each time I get ready to leave in hopes that I will take him to see the Grands. The whole time that he's there, he sits on their laps, entertains them with his toys, and growls protectively at anyone who comes to the door. Grandma takes him for walks around the building.

These days, I call and make sure that Grandpa is having a good day before I bring Quinnie over to see them. Well, today Grandpa was having a good day and I thought all was well. At 1 PM I told Quinnie that he was going to get to go to Grandma and Grandpa's house. He was sooo excited he tore around the house and danced by the door. He could hardly wait to have his leash put on him!

We got to their building, and Quinnie couldn't contain his joy as he sprinted toward the door, tugging at the end of the leash. We got to the apartment, opened the door . . .

 . . . and immediately I knew something had changed. Grandpa was no longer having a good day. Grandpa was leaning back with his eyes closed in obvious pain. Grandma explained that Grandpa had a tummy ache that just started. His lunch didn't agree with him. I let Quinnie go to Grandma but not to Grandpa. Quinnie was clearly a little confused. He wanted to go to Grandpa, too, but Grandma kept him on her lap.

I stayed for a few minutes. Grandma and I took Quinnie on a walk around the building, and Grandma saw one of her friends rolling out streusel in the dining room. Grandma got distracted and wanted to help her friend with the baking, so I realized that I'd have to take Quinnie home. I started to walk out with Quinnie, but my joyful pup wasn't so excited anymore. He trotted along obediently, but his head was down. We got home and Quinnie curled up on the couch with the other dogs and took a nap.

It occurred to me that disappointment was a familiar feeling with Grandpa's illness. Because you never knew what the day would bring, there were many days when things didn't turn out like you'd hoped. But Quinnie was giving me the perfect example of how to cope with disappointment. Be patient, go about life as usual, and wait until the next opportunity.

Just a few days later, Grandpa was feeling better and I took Quinnie over to see them for the afternoon. Quinnie was just as excited as ever. At last, he had the afternoon he'd been wanting.

Thursday, February 20, 2014

Don't Lose Heart with People

I think we all lose heart with people sometimes. We hear the news of murders and violence, we look around our communities and see people's rudeness and lack of consideration for others, we see the road rage, and we are tempted to lose heart. But sometimes it's just a matter of where we're putting out attention.

This week I've been reflecting on the truly wonderful people in my grandparents' lives. These are people who love them enough to be there for them, who pray for their welfare, who seek to be a part of their lives in these last precious days and months. People who go out of their way to be there and do things for Grandma and Grandpa in whatever way they can.

Two shining examples are Nick and Debbie Neff. Nick and Debbie came to see the Grands last week, driving all the way from southeastern Michigan to northern Illinois just for a one day visit.

My grandparents have known Nick since he was knee-high. The Grands began going to the same church as his parents, Joe and June Neff, back in the 1950's and they became fast friends. Joe and June had four boys. I believe Nick was in the middle there somewhere.

He and his brothers Christopher, Timothy, and Danny were an energetic bunch compared to my grandparents and their only daughter, my mother Gale Lee, but they had so much fun together. My mother loved running around with the boys and the Grands and the Neffs had a grand time chatting away the hours. They went camping together. The Neffs had a crazy big 16 person tent. That was a wonderful outlet for the energy of four little boys and one hyperactive girl.

The Neffs lived in a large two story house with white pillars out front and red shutters. From my visits with Grandma to the Neffs, I remember those pillars and shutters clearly. I thought they were really bold and beautiful. They were far different from the small brick ranch that the Grands lived in. The Neffs lived on a busy boulevard, but their beautiful house was set back from the road a bit.

My grandpa recalled last week that one day Joe and he were sitting in the dining room of the Neffs' home, and the boys were running around the house in a circle, chasing each other from room to room. Apparently, the chaos was starting to get to Joe. As they paused in their game, Joe said to them, "Why don't you boys go outside and play in the road?" The boys ignored him, but my grandpa got so tickled. Even now, this memory makes Grandpa laugh. What a blessing to see him laugh!

Nick and Debbie drove six hours one way to spend one day with the Grands, but you know what? That effort paid off in the bright smiles on the Grands' faces and in the new memories that Grandma and Grandpa now have. What does it mean to love someone? How much does it matter to spend one day with two little old people in an assisted living home? More than you can imagine...

The next time I think that a few minutes or hours aren't worth spending with someone because it's so little time and so much effort, I'll think of Nick and Debbie's trek across the Midwest to spend one day with the Grands. Thank you, Nick and Debbie, not only for loving the Grands but for being an inspiration to all of us.

Monday, February 10, 2014

Grandma's Wisdom: Treasure Each Precious Day

When Grandma and Grandpa were still living in Dexter, I bought Grandma a devotional book for Christmas called Jesus Calling by Sarah Young. Grandma and I decided to talk each night and share our devotion for the day. It was a beautiful time, just a few minutes where she and I would read, talk, and pray together. Sometimes Grandma would understand the devotion right away and sometimes she needed me to explain it to her. Those moments were so precious that words really do fail to capture them.

Since the Grands came up here last June, we haven't been sharing our devotion as often because we see each other more and we just never got in the habit of it. But more and more we have been reading them together again. Grandma always reads hers at night and tells me how much it meant to her. She asks me if I read mine. Now that she's on the Exelon medicine for her thinking, she usually doesn't need me to explain it. That's a beautiful thing.

So last night I called around 8:45 and we decided to share our devotion. This devotion, written from the perspective of Jesus as if He were talking directly to us, said, "Seek my face more and more. You are really just beginning your journey of intimacy with Me. It is not an easy road, but it is a delightful and privileged way; a treasure hunt. I am the Treasure, and the Glory of My Presence glistens and shimmers along the way. Hardships are part of the journey, too. I mete them out ever so carefully, in just the right dosage, with a tenderness you can hardly imagine. Do not recoil from afflictions, since they are among My most favored gifts. Trust Me and don't be afraid, for I am your Strength and your Song."

After I read this, I said that the part about God meting out hardships was hard to accept. I wasn't even really sure I agreed with that, but then if God is omnipotent He has to allow the afflictions because He could stop them at any time. Really, God is a confusing subject, way bigger than I will ever understand. And I'm perfectly happy with that, because I am far far far from omnipotent or omniscient. But when it comes to ideas like God metes out hardships, I struggle. The childlike part of me thinks, 'Why would God want to do that?' I was thinking of Grandpa and his suffering. I was thinking about all of the suffering I've endured and the suffering I see in others, especially the innocent and vulnerable. Why, Lord?

I know there are complicated theological explanations for all of this, but I think Grandma's was far more amazing than any of them. When I said that it was hard to accept that God has a hand in our afflictions, she got that strong undertone in her voice, that authority that says she knows she's right about something, and she said, "No, Lara, the fact is that the Lord has to take us home some way. We're all going to have something wrong with us so He can take us home. Now that's just common sense. And this thing with Grandpa, well, that's the Lord's way. We all have to go some way. It's just common sense. And I just treasure each day with him. When we are here, just the two of us, it's so peaceful. I'm so content. These are precious days. I want you to do the same thing, Lara. Treasure each day."

Treasure each day. That's Grandma's lesson to me, one that I think is too often lost on me. I have the illusion of time, the belief that there is plenty of time for what I want to do and who I want to spend time with. The idea that there are no guarantees is true, but sometimes it is meaningless to me because of that illusion of time. But I'm learning. I'm learning to treasure the days with my sweet Grands because I know they are so few. I just pray that I can treasure all my days and all those precious moments in life that only happen once. Because truly, nothing ever happens more than once. And there will come a day when my Grands will no longer be here. That day is in the not-too-distant future.

I think about this with my son, too. There will come a day when my son no longer lives in my house. The day has already come when he will never again sit on my lap. I miss those precious moments. I console myself with the thought that there will other treasured moments to take their place, but really that is feeding the illusion of time, too. I can't really know that. Even with my husband, will I someday look back on these times and wish I had treasured them more because they are gone forever?

I think we avoid thinking about things like this because it seems depressing and morbid. We don't like to think about loss, about how brief life really is. But if we don't face the reality of loss, will we ever fully embrace the reality of joy? Can we treasure our days without facing the reality of loss? Or do we remain trapped in the illusion of time?

My grandma has no illusion of time, and it has sweetened each day of her life. My grandma is a very wise woman.