Hospice

Where Am I? (Now that I’m Home…)

/ Shirleyjdietz / Leave a comment

“Can we go home?”

“Where am I?”

“What is this place?”

These are some of the most frequent questions I’m asked this winter. The husband has been home since the beginning of December. Each time, the opportunity comes along to orient him I tell him how he’s been sick for six months and in several hospitals and a nursing home, but that he is now at home.

Unedited view of our living room hospital. We are grateful to have a 50+ year old recliner which was Dennis’s mom’s favorite chair. It is the only chair small enough for the hoyer to close in on.

“We are in our condo in Hayward and you are in our living room. You are in a hospital bed because you are too weak to walk. You have a hard time swallowing and are fed through a feeding tube into your stomach.”

It is all news to him. Sometimes these things register and other times he just closes his eyes and says nothing. The next time he has to go to the bathroom, that’s exactly what he thinks he can do – he needs to be reoriented all over again.

I tell him “You can’t get. up. You aren’t strong enough to walk and haven’t walked for months.”

He tells me, “How do we know if you won’t let me?”

I tell him, “If you could walk, you would be up doing it because I’m not stopping you.”

This exchange is about as feisty as he ever gets. He has the same cooperative nature that he has always had, but the cognitive decline is very noticeable.

Lately the neurological decline is more apparent also. There are times when he cannot speak clearly, or at all. Other times he can suddenly have a conversation and be understood. What he’s saying may not make sense, but I can tell what the words are.

There are some nights that I think he’s dying (nights are always the worst times) but the morning comes and things look different. His body is stronger than his brain. If he gets an infection of some kind things could change quickly. I try to be careful in caring for him – in the complexities of enteral feeding, medication administration, watching for skin breakdown and managing incontinence.

It helps to have Hospice on the journey with us. I don’t have to make decisions alone in most cases. It helps to be able to hire help, to share the heavy lifting and the unpleasantness of necessary tasks. God has supplied a wealth of resources in all areas of need and that is good because this might be a long haul.

Some details:

– Dennis is on 3 enteral feedings daily, about 8 hours apart, which amount to a 1200 calorie diet. He does get hungry and that looks like restlessness. When I see that I know it is time for a feeding. A full stomach is very soothing for him and it puts him to sleep for several hours.

– His blood pressure has been stable on the three blood pressure meds that he gets twice a day.

– He’s had a UTI recently and been on 3 different antibiotics. One was finished when we found out the culture indicated two different ones. Lots of bacteria getting killed.

– Most of the day is spent sleeping in his mother’s LazyBoy recliner, with an occasional awake moment in front of the tv. He might be listening to much of what goes on. There is occasional evidence.

– The rest of the time he is in his hospital bed in a variety of positions. He goes back and forth between these two places with the help of Harvey the Hoyer. Dennis decided on the name and it gives us a good laugh.

– Our paid caregivers come weekdays for two hours in the morning to help the husband up into the recliner for the day, and for two hours in the evening to get him prepared for the night. Every other weekend I have help, but we are working on that. I’m still filling in the day and doing the nights. It’s interesting and sometimes exhausting but when I need to, I get sleep.

– We are grateful for the humidifier that runs 24/7 in our dry winter climate

– Our daughters visited recently and were able to connect with their dad in good ways, mostly through songs. He still remembers and comes out of lethargy to sing when coaxed. Thank you Esther for the humidifier and Julie for the seemingly endless supply of cookies to cheer my soul.

That’s all for this update.

Harvey the Hoyer, an awkward but absolutely necessary piece of equipment.

Accepted

/ Shirleyjdietz / 4 Comments

Accepted. The husband. Into Hospice.

The last four months have taken their toll on Dennis. I have been convinced that he would never get through another hospitalization ordeal like this has been. However, having that thought did not prepare me for the feeling of signing a paper agreeing to not have resuscitation, the DNR document. It came with a lot of emotional weight.

The last time Dennis was able to talk about the subject of hospice he was agreeable to entering the program if it would help him get home from Maple Ridge. He also thought a long while when the hospice nurse asked him if he felt he was capable of making complex decisions about his health. He finally said no, he didn’t feel capable. Being too tired to think very long, and sometimes confused and disoriented, he was still realistic enough (and brave enough) to say that he trusted me to decide for him. Since then he’s become more confused about his own condition, often forgetting that he’s had a stroke. Often he forgets that he hasn’t been getting up and walking to the bathroom. He forgets he hasn’t been eating for months and has a feeding tube.

More often now he is living in his dreams, sometimes with eyes wide open, hallucinating. His hands shoot up while he’s lying in bed and he’s reaching for… who knows what? But each day there are a few good moments when he is oriented and involved with his real surroundings.

Today, sitting up in the recliner, he was watching our YouTube cooking show from Azerbaijan. It’s slow moving with country scenes, animals on the farm, and a very proficient farm couple harvesting food and cooking some amazing dishes. No talking, no fast moving ADHD programming. He perked up and watched and recognized things. He wanted some coffee – the only thing he asks for that I can give him, besides tea. We sat together enjoying the show with me giving him spoonfuls of coffee every now and then, until I noticed he was asleep.

Have you ever really looked at your spouse’s teeth? Not just the ones in front but all of them? I thought I had, kind of, but now that I’m helping brush them, I don’t know what’s in there. In fact, his whole face looks so different now. The musculature is changing, being held differently. It’s painful to watch him change, but here we are. Changing, ever changing.

Beginning the third week at home.

Our World Gets A Blanket

/ Shirleyjdietz / 2 Comments
We sit looking at this view out our living room window.

Today we have a snowstorm in progress. We must be on the edge of it because there is very little wind, just a lot of heavy wet flakes. The temp is just above freezing, making the roads hazardous. Our caregiving help has the morning off because I did not want them to travel the 20 miles to us.

I put Dennis in the recliner (I feel like a 3 year old, “did it all by myself!”) and pushed him up to the living room window. He had his sips of coffee and is sleeping again. I have been outside making sure the bird feeders are full and taking pictures. It is a beautiful snowfall but I am afraid it will break some limbs off the trees. Sitting together, watching the snow – what a gift it is.

It’s just water, but what wonderful ways it can appear.

Monday we had a video visit with our primary care doctor. I am so thankful that virtual appointments have become a thing done well. I guess we have the last few years of pandemic to thank for that. Our visit with her resulted in our second attempt at getting Hospice help. There are at least two Hospice organizations in our area, and soon to be a third. Some are “for profit” and others are not. Apparently being refused by one does not mean refusal by all.

One characteristic of Hospice is the speed in which they respond. Monday afternoon I got a call from a nurse and an appointment for Tuesday morning.

Dawn, the nurse who evaluates and her trainee Julie spent about an hour meeting at our house with us yesterday. They left feeling that it was possible for us to get on their program and they promised to get back to us after presenting it to their superiors. Again, because of the feeding tube, Dennis has to have special permission in order for Medicare to grant payment. I guess whether or not it happens is not very important to me anymore. I’ve chosen the path we’re on and I know we can handle it without their help if we have to. It will be okay.

I have heard from so many family members and friends, in town and far away, and thank God for all the prayers and words of encouragement. Daughters Julie and Esther are making plans for a visit in the next few weeks. Dennis’s birthday is the day after Christmas. Our 50th anniversary is coming up in January. I have so much to look forward to! A kind neighbor sits with Dennis and allows me to get out for appointments and a walk now and then.

I am finding ways to take care of myself so I can take care of Dennis. So many of you have been encouraging that and I hear you. As a nurse, I have frequently said it myself to others and I know it is important. I think I’m doing well on that account.

Most important are your prayers for us. It means so much to know that our God is hearing our names mentioned to him by others. The accumulated effort of his people is influential and carries weight with God. It’s not that he needs a magic number of prayers before he can take action – he is always acting on our behalf and we feel unusual favor in all the places we’ve been. But I believe he is delighted when his people act like they have gotten his point – we are here to learn to love each other and care.

Miraculous healing is not the point either. It’s sometimes a wonderful encouragement and evidence of God’s power, but what we are promised is that we will die of something in this imperfect world. I’m okay with God deciding when and how. He knows so much and makes the best decisions! That’s how I look at our situation, and I know Dennis agrees with this too.