Caregiver Guilt

It's been a difficult week and month. First, my mother's only sister passed away in California, bringing many flashes of mom's final illness and death in 2010. I can't imagine the recent pain of my niece and her husband as they dealt with all the caregiving and final arrangements without the support of siblings. They are to be commended for their brave decisions and actions these last terribly busy weeks. I pray for comfort in their grief as they try to take up their normal duties at home now.

Besides all the feelings that came with my aunt's passing, I've also been trying to ignore my own feelings of guilt. There, I've said it. It's definitely guilt. I feel guilty for not being happy over Dean's improvement in health since we stopped one of his medicines.

The simple fact is that he was much easier to care for when he was sleeping most of the day and wasn't having any emotional outbursts. Sure, he was having vivid dreams and even hallucinations, and had much more memory loss. His overall health and strength seemed to be slipping away. I was terribly worried about him and it took a second opinion of another specialist to pinpoint what the problem was.

But now that he's back to his ol' ornery self, I find myself wistfully wanting him back in "la-la land". It's a selfish wish for sure, but if I totally come clean and confess, maybe I can quit feeling sorry for myself. There are joys in this difficult task of caregiving. I just have to look for them again.

Taken this Easter Sunday, at our in-laws' church...a joyful occasion!

Snow in the Morning

My life has slowed down considerably, as far as outside-the-home activities, since Dean's recent weight, sleep, and drug issues. To compound our isolated status, a blizzard is in the forecast for tonight. Everyone is making their final trips to the store, gearing up for the snow we've all been waiting for and dreading at the same time. The beauty of seeing new snow on the ground in the morning will make staying home worth it for awhile at least.

I look forward to another beautiful sight too. Seeing my loved ones on Resurrection Morning. Today, half out of boredom, I moved a bookcase from the living room into my bedroom. On it were pictures and mementos of my dear, departed parents. The caregiving for them was also marked with boredom and isolation--that time in their hospital room.

I'm tired of being isolated from loved ones, but especially from my Jesus. That will be the sweetest sight of all on Resurrection Morning. Jesus coming in the clouds to bring us all home with Him. And what a glorious, heavenly home that will be.

Minnie at her watchdog post--foot of my bed! She's such good company too!

A Trip to the Grocery Store

Dean has bounced all over the map the last couple of weeks when it comes to his health. He's gone from getting almost no sleep to sleeping way too much, from having an appetite that asks for food almost as soon as he gets up from the table to sleeping through breakfast and lunch and not requiring much food in between.

His hunger seems to have returned somewhat, but I have tried earnestly to satisfy it today with anti-diarrhea foods. Need I say more. We think the diarrhea is a side effect of his new medicine. But it makes it even more challenging to come up with something for him to eat when there are certain foods he should avoid and others that he should eat. I had to make a trip to the grocery store to get stocked up on the right foods. Now, to convince him of my choices.

This old earth isn't so healthy either. I need to remember that there are certain activities that I should avoid if I want to stay away from the sins that are messing up our world so much. But there are also lots of activities that I can enjoy that will keep me from being sin-sick. Fortunately, a visit to my Bible tonight can help me stock up on what I need.

That BIG Tractor

I almost hate to write about Dean's pills again, but it is the all-consuming thing in my life right now. Instead of being awake all night, now he's sleeping night and day. He slept through breakfast. But it blew me away when he wouldn't wake up when his Meal on Wheels arrived. It was time to try and reach his doctors and nurses on the phone again.

He got up an hour or so later though, ate lunch, and then I had him help sign some Christmas cards, just so he wouldn't go right back to bed. The notes he wrote on them were a bit undecipherable, but I got a laugh, hearing him read one out loud as he was writing it. He was reminding someone about the big tractor that ran over him. "I mean it was a big, Big, BIG tractor," he wrote. Just comical how he said it.

At least I did have two small accomplishments today, since I seemed to be a failure at trying to talk to anyone about his pills. I got some Christmas cards ready to mail, and I gave the dog a bath.

Jesus gives me small spiritual victories too, even while there's these big, Big, BIG ones out there waiting for me to tackle. I'm not in the battle alone, even though it feels like it some days when no one seems to return my calls. I'll just "make do".

Sleep at Last

Dean finally got a full night's sleep last night. But it wouldn't have happened had I not called the home health agency and had the on-call nurse come to check him out yesterday. Hated to do it on the weekend, but in addition to sleeplessness, he has been having a lot of mental confusion.

The nurse checked his vitals and after getting the doctor paged, we were instructed to reinstate the medicine that we were trying to get him off of. I know. None of it makes sense, but we will see him in his office this Friday, so perhaps we'll solve this dilemma by then. I'm just happy that he is finally getting some much needed sleep.

The nurse did have some good affirmation for me though. She said when she talked to our regular nurse on the phone before coming over, she was told that she'd better stop for a visit, because I wouldn't have called unless there was a good reason. It was nice to hear that I'm taken seriously when it comes to Dean's care.

I try to stay on top of things, but haven't always been successful in the past. That's why I know that God is really the one to get credit for anything good that comes from my decisions. God is the One we should all take seriously. When He says come, we should go.

Sleepless Days and Sleepless Nights

Another sleepless night for Dean, even though we doubled one of his antidepressants. I have hidden or disguised as many foods in my kitchen as I can to prevent his foraging them in the middle of the night. So far, we have said good-bye to a box of chocolate-covered cherries, a pizza, and a gallon of ice cream. Nothing is safe from his nightly kitchen raids.

Not sure how we will address all of this, but I'm sure the doctors will get it figured out here before long. Thankfully, Dean's sleeplessness hasn't transferred to more grumpiness during the day. He has been able to doze a lot in his recliner.

I often have wondered whether it's right to keep Dean on so many medications, especially when they will undoubtedly end up shortening his life. But extraordinary conditions sometimes demand extraordinary solutions. And this is confirmed to me whenever we have to tweak his drugs, in order to tweak his behaviors. He is much more manageable to us and happy with himself with his pills.

It's a blur to me what behaviors are brain-injury/dementia-induced, and which ones are due to the powerful psychiatric medicines though. But regardless, I'm glad we have a good geriatric psychiatrist on his case. And our efforts are allowing Dean to have the best quality of life he could have for someone who had a tractor run over his head twelve years ago.

I recently found added confirmation to our treatment plan. This article suggests that many dementia patients can benefit from antipsychotic drugs. Hooray. I feel exonerated.

http://www.comebackearlytoday.com/antipsychotics-dementia-patients-extremely-severe-symptoms-2/

Drug Dealing

I was in for a shock when I picked up one of Dean's medicines today from the pharmacy. I'm used to checking to see if they filled the right medicine and the right dosage, and am usually pleased with their attention to those details. But I never expected to have the wrong NAME on the bottle. In other words, to have someone else's medicine instead of Dean's!

They were extremely embarrassed when I called them about it when I got home. They checked the other person's bag and immediately saw their mistake. With all the many, many prescriptions I have had filled for Dean and I the last ten years, I suppose I can forgive them this one slip. Even if it was rather major. How can I do this, I asked myself today? I could have made a major stink and demanded some recourse from the pharmacist himself.

As a caregiver of a man with dementia though, I am in the business of forgiving multiple times daily. Nothing heroic about it. I've just had lots of practice. But I've seen other caregivers struggle with it. Even those who seemingly loved their spouse at one time find themselves unable to forgive and deal with the verbal abuse that spews out on a regular basis.

I know the difference has to be the Lord. Only He can forgive and provide us with the necessary love in our hearts to forgive, as He forgives. "Forgive us our debts, as we forgive our debtors." The Lord expects us to forgive the way He does.

Whether it's for one big mistake over ten years or for dozens of little "boo-boos" throughout the day, only God can give us the ability to love enough to forgive the way He does. Thank you, Jesus.