Another fall; Confined to bed

Things have gone downhill quickly. August 23 Doug fell in the bathroom at 4:30 am. He was using the walker. I called hospice and they sent out a nurse but I also called the squad to come pick him off the floor. He bumped his head so has lacerations but nothing serious there. His left hip has a huge bruise and is sore. 

The EMT guys are good with hospice - they understand they are just to help hospice patients off the floor and not transport to hospital. 

Doug is full time in a hospital bed now. We have it in the living room so I can watch him. No more transfers to wheelchair. He has no strength in legs and is a major risk for another fall. 

Doug is not handling his confinement to the bed well. He does not remember the fall, so he doesn’t understand why he can’t get out of bed. I tell him it’s because his legs can’t hold him up now. Then he wants me to put him in the wheelchair and take him to the commode - but that isn’t allowed because he would need to stand for the transfer to the chair. He can’t bear weight or he would fall again. He is really rattled. 

He HATES having to use the diaper! I don’t blame him. He throws a leg over the bed rail and says he’s going to walk. He gets very agitated. I have to be right beside him to tell him no, we can’t. He gets mad. He still has enough strength that he could climb out of bed, but he would fall immediately. 

Sometimes I fib and say “wait until the nurse gets here”. Or if he’s really really upset, I have to give him Haldol to calm him. This is ordered by hospice. 

I feel so bad being the bad guy. 

This is not the Doug I know but I still love him. 

This is not death with dignity, when your wife has to change your diapers. And he gets so frustrated and doesn’t remember why. Poor guy. Guess I’m not handling it well either. 

Today Doug was much calmer. The nurse came and he told her he was going to walk. She said that's not very likely but possible. So Doug and I will do some simple leg exercises while he’s in bed. We can hold out hope and do something positive. 

Today Doug was able to joke a little about the diapers: When he was wet, he called out to me “Cleanup in aisle nine.” When it was the other, he said “Cleanup in the basement.” So we are able to joke a little - attitude is everything. Much better - Doesn’t change the situation but sure helps a lot. 

I’m going to get a paid private caregiver to help me, probably for nights so I can sleep. Tomorrow I will interview a retired nurse who is recommended. I also have several other names of caregivers that friends have used. I won’t have 24/7 help but even a few hours would be good. 

There is also an option of using respite care, paid by Medicare. It is limited to five days/nights in a Medicare approved facility. But I need long term help at home. I'm exhausted. 

I’m glad our son and daughter in law were able to spend time with us just before this.

Our dog Nikko spends most of his time laying on the bed as close as he can get to Doug. He loves his daddy. He jumps up by himself. Our other dog Pippa spends her time on her own bed. She's also too little to get up on the bed. 

This is very hard. A lot of people are offering help in different ways. Many thanks for each of you. 

Love to all.

We know from Jesus' life that there's purpose to our pain. God doesn't waste anything, including suffering. He doesn't always remove us from trials, because He plans to use them.

Even if God's plans for our lives aren't what we hoped for, learning to trust God is part of His good plan.

Megan Fate Marshman, Encouragement for Today

Weaker now

 Over the last ten days we have seen changes. Doug has lost strength in his legs. He can't go up or down steps, even using the walker. We found that out when we were at our neighbors, on their deck. He would have fallen if our neighbor hadn't been right there to help him. 

He is able to get around the house with the walker, so that is good. A good friend from church brought over two kinds of wheelchairs to loan us. One is a lightweight 'transport chair' and the other is a regular type. And we now have a ramp down into the garage, so we have a way for him to get outside. Our church is loaning us the ramp - aluminum and not too steep. Two friends delivered and installed it for us. Our son and daughter in law had already come and helped me clean out part of the garage to make room for the ramp. 

 I wanted to try going for a 'stroll' in the neighborhood a couple days ago, so Doug humored me and got into the regular wheelchair. I backed him down the ramp and away we went. Our street has a slight slope to it; we don't even notice when walking or driving. But pushing a wheelchair is different. We felt every rock and incline. We didn't get as far as I intended. I was concerned that maybe I wouldn't be able to push him all the way up the ramp. He asked me to walk to the mailbox (not far away) while he waited in the garage. When I got back - less than two minutes later - the wheelchair was empty and Doug was gone! He had walked up the ramp using the walker! Smart man - he said it wasn't hard and he was careful. I was so relieved to find him in the house and no harm done. Now I need to practice pushing the chair up the ramp with some weight in it. I'm not as strong as I thought! Our neighbor says he will come over if I wimp out going up the ramp.

Doug has maintained his usual good attitude. He is amazing. We have amazing friends too. Some have brought food - and beautiful homemade bread. A few days ago a friend who is a professional violinist called and asked if she could come over and play for us. Of course! She had it all worked out - she was on the patio - Doug and I were on the deck. And a few neighbors came over and sat in lawn chairs to enjoy the music. All with social distancing and masks.  Noelle played a few hymns, some classical and some bluegrass. She played for a whole hour and even took requests. What a wonderful time it was! 

 We had a mystery gift too - yesterday when I walked out the front door I discovered a gorgeous display of art on the sidewalk - not chalk but an inscribed rock surrounded with marbles arranged just so. Each marble has a rose painted on it. The rock says "God's Love is surrounding you!" It is a sweet encouragement. I finally found out who did it, after everyone claimed to know nothing. A dear friend who is an artist, and her daughter. We didn't hear a thing, not even the dogs. 

Doug has been eating well and is maintaining his weight. He is having ongoing trouble with his eyes; he does listen to audiobooks. He never complains. The hospice nurse comes once a week. 

God is giving us the grace to live one day at a time. 

I'm closing with the words on a card from friends:

"Five things God wants You to Remember in Trying Times - You're never, ever alone. Nothing takes Him by surprise. When you're weak, He is strong. He's the God of new beginnings. His love never gives up on us."

Blessed with friends

Nothing dramatic has happened lately, and that's good. We are not bored. We have plenty of routine things to do. 

We have seen signs of God’s love in small ways:  

• cinnamon rolls left on our porch, 
• an elderly neighbor bringing us flowers and a sweet card,
• friends calling to see how they can help or just to say “hi”. 
• Friends stopping by to show us their new dog. Our dog Nikko was sure it was an intruder and sounded the alarm rudely. 
• Muffins and soup brought to us by a friend. 
• Books to read. In Doug’s case audiobooks from the library. 
• The rain we have had lately! I didn’t have to water, and the plants enjoyed the rain. 
• Friends bringing fresh veggies from their garden. 
• We have a volunteer blue spruce coming up. This is its third year. The first year I almost pulled it up but then decided to wait and watch to see if it would survive. Looks like it will grow up. 
• Our Pastor Tom and his visits and prayers.

We appreciate everyone. God has blessed us so richly with friends. 

I have been able to leave the house to go grocery shopping, walk the dogs and enjoy the sunshine. Doug is able to get in the car by going out the front door, but he says he’s not interested in going anywhere. I know that can be a sign of depression, and he is taking an antidepressant. But he is content to stay home. He’s not having much pain at all, just the intestinal issues. He sleeps later and takes a nap after lunch. 

Hospice has been active - one week we had four hospice visits. Nurse, chaplain, social worker, and an aide who just dropped off an item. The dogs are sure that everyone is coming just to see them! Three out of four hospice workers we’ve met so far are dog lovers. At one visit the chaplain spent most of her time petting Nikko. Maybe good for both of them. 

Thanks to hospice, we now have a toilet seat with arms that makes it easier to get up. Very helpful. 

Doug has been using the walker a bit less. He still gets dizzy if he bends over or gets out of bed too fast but he’s careful. 

Doug has, for a long time, been showing me things I will need to know how to do. 

A couple days ago I changed the lightbulb in the shower. I had to use the stepladder. Not my favorite thing to do but it went okay. Next time I use the ladder maybe I will go beyond two rungs, ha ha. 

Love to all. 

This is from Jesus Calling by Sarah Young:

“Hope is a golden cord connecting you to heaven. This cord helps you hold your head up high, even when multiple trials are buffeting you. I never leave your side, and I never let go of your hand. But without the cord of hope, your head may slump and your feet may shuffle as you journey uphill with Me. Hope lifts your perspective from your weary feet to the glorious view you can see from the high road. 

You are reminded that the road we’re traveling together is ultimately a highway to heaven. When you consider this radiant destination, the roughness or smoothness of the road becomes much less significant. I am training you to hold in your heart a dual focus: My continual presence and the hope of heaven.”

Weaning off the walker

Doug has been good about using the walker. I know he'd rather not, but I confess I am sort of paranoid about him falling again. 

Last Monday Dr. M, the Denver specialist, was scheduled to call us via Cisco Webex video. One of his nurses called to say that he was running late. 30 minutes later he was not available yet, so the nurse asked if he could call later rather then leaving us holding the phone. He finally did call, but we just did a plain conference call without video. That's fine with us. He said for Doug to get off the percocet and try ibuprofen for the back pain. That worked very well. Now he is not even taking that, and feeling better, except for some intestinal issues. 

Dr. M asked about the plasmacytomas. They are not painful; Dr. M says if they do start to bother Doug, a short course of dexamethasone can be given. 

He thinks dehydration was a big factor in Doug's falls; that he fainted. I agree. Drinking is something Doug can do. My job is to encourage him to drink more without nagging. 

Talking to Dr M always makes us feel better. He encouraged us to get out of the house when we can. We will visit with him again in two weeks. 

Two dear friends brought food over today. We are so blessed!

On Tuesday morning a different friend called and asked if she could bring some freshly baked peach cobbler. Sure! 

We also got fresh greens from a friend's garden. Yum.

Doug has been taking long naps in the daytime. Nothing wrong with that. 

I'm reading a good book: Something Has to Change by David Platt. 

Today a friend from church stopped by to bring us beautiful pink roses! Such a bright spot in the day. 

Today the hospice nurse came. She watched Doug walk without the walker and she thinks he is okay without it as long as he feels steady. She told me to let Doug use his judgment - she knows I tend to be over-protective! I just have to get the image of those falls out of my mind! I told her we really want to get out on these nice days. The steps going down to back patio are too many and too steep. So she watched Doug go out the front door and down the two steps without the walker. We do have a sturdy railing, thankfully. (Doug put that in several years ago with a friend's help, after I twisted my ankle.) She thought he did well. So now we can go for rides in the car! 

The nurse did caution him to use the walker if we walk to the mailbox, since the road surface is not smooth. 

Instead of weighing patients, hospice has a new way to check on weight loss. They use upper arm circumference measurement, using centimeters. Much easier than a scale! Today's number is a baseline, 23 cm. He still has an appetite and enjoys food but is eating less. His oxygen sat (saturation) today was 93%. 

We will get a nurse visit every week. 

One more bright spot today: one of the nurses from the infusion clinic at the hospital came to see us. She is such an encourager. Doug has always loved to tease her. Another of God's angels. I will say it again - we are so blessed! Of course we do have down days too, but counting our blessings is not just a corny saying - it works. 

We are trying to live in the moment, not always easy, but possible with prayer. God sends us many signs of His love. 

Today's quote:

"Our first and natural inclination in any trial is to pray for God to remove the difficulty. But God's first priority is often to strengthen us in the midst of the difficulty rather than to take us out of the difficulty. That's because He can see the treasure that lies at the end of the trial."  Gary Thomas

Doing better

Last Monday Doug started taking percocet for his back pain. He started on one pill every 4 hours but that didn't help the pain much. So the hospice nurse said to give him two pills and keep track of his pain level. After a couple days the pain lessened. But he started having some mental confusion. We are blaming that on the two percocet. So we have backed off to one percocet and he is clear headed now. I am thinking that soon he can do without the percocet - then the next goal will be to walk without the walker. He is taking a couple naps a day - that's good I think.

Friends have been bringing us food; they are much appreciated!

Today we had a very nice day. Our son Kelly and our daughter in law Jamee came up to see us. Jamee brought her famous beef burritos with green chile sauce and all the toppings. Jamee is a fantastic cook.
After we ate, Kelly and Jamee did all the kitchen clean-up. They are spoiling us.

While Doug was resting, Kelly helped me with a yard project that I had put off. Jamee and I carried rocks while Kelly figured out where to put them. I just have a little to do to finish it up. We have a tiny deck off the sliding door - I call it our deckette. It will hold one chair at an angle, so Doug will be able to sit out there if I'm working in the yard.
We have the best son and daughter in law!

So far Doug is being careful and using the walker faithfully, so I can relax a bit.

Monday we have a video chat with Dr. M, the Denver specialist. And Thursday the hospice nurse is scheduled to come. I can call her if I have a question or problem before then.

Love to all.

Verse of the day:
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes."  Matt 6:34  The Message

Falling

Last Thursday we went for a drive higher up into the mountains, past Cottonwood Lake on a dirt road. Doug drove, first time in a long while. We went up until the road got too narrow and rocky and we saw more ATVs than cars. we found a place to turn around and came back home. It was fun to get out.
Friday we got the road dust off at the car wash. Good friends picked up a take-out dinner from a restaurant and delivered to us. Very kind and enjoyable!

Friday night about 10:00 Doug fell. He knows not to do this, but he bent over to turn off a floor fan before I could stop him. Next thing I know he was sprawled on the floor. He was conscious but dazed. He didn't seem hurt but he couldn't get up; couldn't get his legs under him. Best thing to do most of the time is let him stay on the floor for a few minutes. Finally I pulled a kitchen chair over to him and he slowly managed to get onto the chair. After a few more minutes on the chair, he held onto me and was able to walk to the bedroom.
I waited until 7 a.m. and called hospice to report the fall. Doug and I had a serious talk - no more bending over! We are very thankful he was not hurt. Hospice is sending us a walker.

Saturday and Sunday were nice quiet days.
Sunday night (last night) Doug fell again. It had started to rain and blow, lightning too. I woke up about midnight and Doug was sitting up on the side of the bed. I said "What are you doing?" He said he wanted to close the window. I told him to stay put and I closed the window. He had a bad fall several years ago and it was decided he has orthostatic hypotension. Fancy term for low blood pressure that can result in passing out if he gets up too fast. Pretty common in older folks. So he has learned to sit for a few minutes before he gets out of bed and stands up. That has worked well. Why he has suddenly forgotten to do that is anyone's guess.
I thought he was going to lie back down in bed. Then I heard a loud thud! When I turned on the lights, he was sitting with his butt up against the closet door. When I touched him he was cold, clammy and sweaty. So I pulled his pillow onto the floor and helped him ease into a lying down position. He said he wasn't hurting anywhere but he had a goose egg on the elbow and torn skin. Finally he was able to roll onto a rug and I used that to pull him closer to the bed. He felt much better to the touch. With my help he was able to get onto the bed. I bandaged his elbow. At 3 a.m. he woke me up and said his back was hurting and asked if I would give him some morphine sulfate - one of the drugs in the hospice kit. I wasn't sure how much to give so I called the 24/7 hospice number. One of the operators answered the phone immediately and said he would get one of the nurses to call me back.
Well - I had forgotten that I had my phone set on 'do not disturb' from 10 p.m. to 7 a.m. So the nurse's call to me didn't go through. She called our son who is listed as an emergency contact. So I reset my phone! Duh! Anyway the nurse told me it was okay to use the morphine and how much to use. She asked if we needed a nurse to come right out. I said no need for someone to come in the middle of the night. Neither of us got much sleep but Doug's pain was less.

Today he is better but the morphine makes him too drowsy. So the hospice Dr. wrote a script for a different pain med and the drug store delivered it today.

The chaplain Deb who is also a physical therapist came today. We had not met her yet. Turns out we know her mother in law who goes to our church. Deb is very kind and caring; we had a nice talk and she adjusted the walker to Doug's height. Deb loves dogs - Nikko snuggled right up to her. So far everyone we have met from hospice has impressed us. Compassionate and capable.

Doug and I have made a deal - no more getting out of bed without waking me first! I pray that his brain will wake up before his body starts to move.
We have had enough excitement for a while. We are both very tired.
Tomorrow his nurse is coming out.

Love to all.

Doing okay

Doug is doing pretty well. He has no pain, praise the Lord. He walked to the mailbox with me this morning. At a slow pace and using a cane, but it's so good that he gets outside. His appetite is good - he's eating well. I think he's feeling better with the chemo drugs washing out of his system.

Dr. Matous, the Denver specialist, is keeping up with Doug. We had a telehealth visit with him on July 6. We didn't realize he would be following up like this. He wants to check in every two weeks via video. I know part of the reason is for his own learning, since Doug is now a somewhat unusual case with the aggressive plasmacytomas. But he also really does care about his patients and does not drop them after referring to hospice, unlike some doctors. He asked how we are both doing with hospice, and how Doug is feeling. We told him having hospice is a comfort. He is a compassionate man. He wants to "see" us again on July 20.

Last Monday Doug's brother drove up from Denver. We had a good visit and went out to lunch - first time since Covid started. We sat at an outdoor table that was spaced far from the others. There was a nice breeze and we had an umbrella for shade. We had a lovely time.

Today was a good day. Our Pastor Tom called and came to see us. We always enjoy his visits. He's a dog person and the dogs are sure he comes just to see and pet them!

Doug's hospice nurse Alexis made her scheduled visit this afternoon. She said some people do so well on hospice that they graduate and come off hospice! If that happens they can go back on when needed. Alexis will come again on July 23. The dogs were so happy that two people came to see them!

We are keeping it slow and simple, looking for blessings and appreciating the cards and phone calls from friends. Most days I join Doug for our 'siestas' after lunch.

Love to all.

Today's verse:
"I will guide you along the best pathway for your life. I will advise you and watch over you." 
Psalm 32:8