A few quick tips for caregivers

In the past month I have facilitated two support groups and met with almost a dozen families coping with end stage dementia and PD. These are a few of their tips- I love them!

• If you are a single caregiver, your loved one needs a LifeAlert-type alarm in case of emergency. That's a given. But do you have an emergency bracelet that says "I am a caregiver. My spouse lives alone. Please send someone to check on them"? Do you have your ICE (n Case of Emergency) contact in your phone, and attached to your car Bluetooth/GPS if you have one?
• Do you have a plan for evacuation if you are in a fire/flood zone and you are caught away from home? Is there a designated back-up system?
• Do you have a meds sheet accessible to anyone who might be there? It doesn't take a lot to take pics of the meds and attach them to a list of meds and how you give them and when. Remember- not every helper can read the tiny print on the med bottles. A picture is worth a thousand .02 font words.
• Is the DNR posted- if you have one?
• If your loved one is using a cup with a lid and straw sometimes the straw moves too much- especially for shaky hands. Auto parts and hardware stores sell "O rings" for engines that will slide over the straw and down to the base, holding the straw in one position. No more chasing!
• Do you tell your loved one to stop for a count of ten when they first get up? That time can prevent falls. You have to use the word "Stop." We are all conditioned to follow that command.
• STOP signs on doors can and do prevent wandering.

I'll be back with more wise words from other carers (That's the British term for caregivers- and I like it much better!).

The Third Time

I’ve done this three times now- listened to a doctor tell my spouse that she was going to eventually die from a disease. The first time Linda fooled everyone- she beat breast cancer. That one IS beatable. Sometimes. The second time it was pulmonary fibrosis. That was a no win, no foul. You can’t get around PF. Linda battled valiantly, but nobody wins that battle. She died in my arms.

Today it was our turn with Casper. I’m not sure she even realizes it yet. She knew she was missing all the answers on the MMSE (Mini Mental Status Exam). She knew she was falling over all day. She even interrupted the doc as he was doing the exam to tell him what symptoms she wanted fixed. After the MMSE he patiently (way more patiently than usual) listened to her wishes, and gently explained that there are no medicines for loss of balance. That he can see and hear the memory loss. That he’s afraid of bigger and worse falls with broken limbs. And then he told her as gently as he could that this is bigger than Parkinson’s. This is Diffuse Lewy Body Disease, and in his research it’s his belief (and mine) that this is related to PD but does more damage. That there is no medicine. There is no research she can be part of at this point. Right now it’s a matter of protecting her from herself and injuries as she gets worse. I am pretty sure I saw some comprehension as he was talking, but it’s hard to tell sometimes. Ten minutes before that it was October and Winter even though it was 109 degrees outside. We were in a non-existent county and the wrong city.

He did offer a new med for the psychosis that is a hallmark of this disease process, but with weekly (!) blood draws, weekly prescriptions based on the blood draws (can you say co-pay?) and a chance of sudden death from the medicine. Doesn’t that sound fun? Thanks God that when we got home we had an offer of home blood draws to cut the stress and travel for Casper. I love nurse friends!

We walked next door to the lab, with Casper shaking off my arm as she went sideways over and over, after another patient fell backwards and had to be caught by her family on the way into the Traubman Center, the Movement Disorders clinic where Casper is seen. As we walked I had thoughts about writing letters to all the neurologists who misdiagnosed, who would not listen to my descriptions or read the typed notes I had of the symptoms and history. I mulled over their inexperienced staffers doing the MMSE, where this doc does his own, thoroughly and easily. I tell myself that the outcome would be the same. This is yet another unbeatable disease joining the list of diseases I hate. But this one is especially cruel. The patient knows there is something hugely wrong. The family does too. But the professionals around them won’t hear what is said. In our case it was “this is depression.” In reality, depression is part of the disease itself, as the brain is depleted of precious neurotransmitters that create depression as they disappear. She was depressed- but that was not why she was tired and confused- she was tired and confused because she was demonstrating the disease process, which includes depression. And in their process they made her feel crazy and useless, the two worst feelings for someone trying to cope with dementia.

So we had the long ride home. Past the signs advertising “Active Lifestyles for your golden years” and “Medi Spas for a brand new golden you” and “You deserve a long and happy retirement.” I imagined deploying explosives. We passed “memory Care Units with the best care for your loved one.” I hit the gas pedal. We watched videos of active seniors exploring underwater caves in the lab. I read a magazine. Casper is at least receiving her Social Security. Linda died the month before hers arrived. She was in the special five (not standard six) month “waiting period” after qualifying for terminally ill people. But a long and active retirement? We are once again not going to have that. I had to text her sister with the update. Then we drove in silence.

Dinner out? Nope. PB&J please. Casper style. Mix the ingredients and then spread them on the bread. We passed Palm Springs and the fabulous array of restaurants to go to the grocery store for white bread, Diet 7-Up, and cat food (not for us, thanks). We sent the kids out for pizza after a long and difficult day with the cousins. We will eat in our room, where Casper won’t fall, and recover from today. And I will pray, hard, that we can get past the hard emotions and do this with grace and dignity once again. Casper has helped many people leave this world in comfort and dignity. She was by Linda’s side. We are nowhere near that yet, but we are clearly heading there. Today there were not reassurances that this won’t end in hospice. Today we were warned not to let her fall and literally break her neck. And so we begin again. No miracles. No potions. Caring, and loving, and making special moments happen as we see sunset coming whenever it might. It could be 20 years. It could be much sooner. And it will be together.

"What happens when I can't do anything anymore?"

Some weeks have a few hard moments. Some weeks, like this one, have a few happy ones. I am told I need to have a better sense of humor on this blog, so I'm going to try, but some weeks, well, just aren't funny. They are poignant, they are memorable, they have love and caring and meaning. But funny they are not. And they are especially not funny when every person in this house is a hormonal mess! (I really never thought I would be okay with an adult child wanting to be gone with a boyfriend, but at this point I might even pay for that to happen. Oh wait- I did pay. Sushi and Trader Joe's to go in exchange for three days of peace and quiet. Not a bad trade is it? If you have adult teens you know what I am talking about. Admit it.)

Right now Casper is dozing in her fitful Casper way. It's close to bedtime and she hasn't really been up all day. Or yesterday. Saturday we got out for a few hours, but that wore her out. It's been maybe five days since she was really up. As awful as that sounds I am okay with that, because we have hardwood floors and she is still recovering from her concussion. I am still price shopping for fall mats, because my insurance will not cover fall prevention items- just the ER visits, after deductible and co-pay, for falls. I am trying to understand the stupidity of that. The best part is that if she were on hospice care fall mats would be covered if she were terminally ill, but as a person still expected to live she cannot have those items covered. Even Anthem Blue Cross could not explain their reasoning on that.

So today I got home and Casper was confused. Confused enough to actually admit it and tell me about it. Yesterday was quiet moodiness, which always means, as I have learned in dementia land, that she is struggling with delusions that trouble her and she's not willing to share. Last weekend she was really moody, and said he dad had been visiting (in her dreams and waking moments) and saying mean things to her about being a lesbian. I know the family has told me he worked his way past that before he died, and loved her previous partner. Unfortunately, in dementia land, which is like the Rabbit Hole gone bad, the bad memories seem to bubble way before the good ones. So Casper could remember  a feeling of total abandonment by her family and rejection by her dad. Lucky for me, I have her sister Sandy. Three texts later I untangled the story- when Casper came out her dad packed up the whole family and moved them to Kansas to get them away from her. Ultimately, her mom made her dad bring them home, and they were reconciled for the rest of their lives. That part was missing in the memories.

When I got home she was quiet, and she looked at me and asked "Is there some place I supposed to go during the day?" What? "I think I go somewhere during the day. Where do I need to go?" Umm... Refer to Rule #1- never argue with dementia thoughts. "You used to go to work. Now you are home." "I think I need to go somewhere and clean and help someone." "you used to do that. Before you were a nurse. You gave baths. You help here. You help my mom. Is it that?"

Perplexing silence.....

"No. I can't tell. It's just me. I think I need to go."

More silence....

"What happens when I am useless? When all I do is sit? Or sleep? Or I'm bedbound?"

The reality is all of that is coming. It's lousy. And Casper has no way out of

it.

"Why are you asking? We are planning our wedding. Remember?"

Finally- a smile.

"Do you remember the flower girl dresses?" 

"Yes- they are so cute!"

"Do you think I would ever marry someone and then abandon them? Don't you remember Linda?"

"Linda was different. You guys had all those years. She wasn't going to lose her mind."

"I loved her. I love you. Is there a difference?"

This is preparing for the worst in dementia land. The place where you have to acknowledge that there is worse coming. That at some point in time Casper really won't know me. That she'll live in her memories. That she'll eventually stop communicating. We both know it. We've both seen it. This is the time to get some new thoughts into her head to comfort her at those times.

"I will never leave you. I will never place you. I will keep you home. I promise."

Hand holding goes a long way in communicating. Tonight it said everything. There were tremors. She could not lift herself off the bed without help. She choked when taking her meds. But we held on tight.

That's what you do when battling this critter called Parkinson's (soon to be diagnosed as Lewy Body Dementia)- you hold on tight.