January 2, 2019

Wednesday lunch with Jane:

When I arrived today, Jane was slumped over to her right in a chair in the great room. The caregivers were preparing lunch. I walked over to her, squatted down in front of her & grabbed both of her hands. She looked at me, but I could tell she was far away. I asked her if she would stand up so I could help her walk to the table for lunch. She said ok & allowed me to help her get up. I began to lead her towards the table – I was standing in front of her, holding both of her hands. It seemed difficult for my stepmom to walk & I noticed she was leaning towards her right. One of the caregivers walked up behind us – he said she is wet – let’s get her to her room. So I led her to her room instead. It took awhile because walking was very challenging for her today.

Once Jane had been changed & had on new pants, the caregiver suggested I used the wheelchair instead of making her walk. I will be honest, I was a bit concerned she would fall so I didn’t argue when he grabbed her wheelchair. He helped me get her into the chair & then I wheeled her to the kitchen table. Jane was moved to a private table for meals due to an issue with another resident many months ago. Jane was not the issue, yet for some reason she was the one who was moved. Honestly, there are some decisions made at the facility that I don’t always agree with, but since Jane is always fed her meals, it didn’t seem to impact her much to move tables. Moving rooms is a different story (which was done once without my approval – it won’t be happening again). However, her private table is a small 2 person table & her wheelchair does not fit under it. So if she is sitting in her wheelchair when I feed her, it makes it a bit more challenging. I feel it is not going to be long before Jane is in her wheelchair full time, so something is going to need to change.

I was able to prop a stuffed animal on Jane’s side so she was not leaning in her wheelchair. She ate well for me & drank her water. It was still a challenge to drink where eating still seems natural. One of the girls I run with was explaining to me on Sunday this can happen with dementia patients. She explained there is a really thick liquid which is a bit easier to get down in this case. However, it does not taste good. I hope my stepmom stops fighting before we get to this stage. I don’t want her to die from dehydration, but I also don’t want to force her to drink a horrible liquid either. I really don’t like the options this disease leaves us with. Dementia is a very cruel disease.

After Jane ate, I opened up her cupcake & explained it was a new flavor. I believe they called it chocolate raspberry, though the only chocolate I saw were the chocolate shavings on top of the vanilla cupcake. The cupcake had a raspberry filling with a raspberry frosting & Jane enjoyed it. However, lemon is still her favorite. She enjoyed every bite of her cupcake & then I grabbed a blanket to wrap her up before heading outside.

It’s cold in Phoenix today – too cold to sit outside. I told Jane we would go visit in the clubhouse. As we walked from the house to the clubhouse, our dove flew over our head & perched on the tree limb. We haven’t seen him for awhile, but as I walked underneath him, I saw the marking on his neck – it was our old friend. He is the only bird who still sits with us – all others fly away any time we get close. Is he there for Jane? What message does he bring? Is Jane aware of his message?

We settled into the clubhouse & took our picture. I showed it to Jane & she smiled. We texted it to my dad & she held my hand tightly. I always sit across from Jane now so she can make eye contact with me, but today she seemed tired. She would not let go of my hand, but closed her eyes & seemed to want to rest. One of the residents, Rose, returned from lunch with her husband. She wanted to sit down next to us & Jane didn’t mind. She pulled out her cards to play a game of solitaire. After about 20 minutes, she asked me if we were leaving soon. I said in a little bit. She said ok – I am going to walk back with you. She asked me that same question several more times. She is not as far along this journey as Jane, but I have watched her progress over the years. I honestly think she didn’t remember that she kept asking me the same question. It makes me sad to watch others also on this journey. When it was time to head back, Rose stood up & followed us. She is in the house before Jane’s, so we left her on the sidewalk heading to her house.

I got Jane inside & with the help of Bindu (one of the caregivers) moved her from her wheelchair to a chair in the great room. Most of the residents were sitting there watching a movie. Jane likes to be around others. I wrapped her blanket around her & tucked the stuff animal on her right side where she was leaning to help provide her support. My guess is Jane had another episode & that is what is causing her to lean so badly today. It is also likely the culprit of her being so tired. I wish Jane would have a massive stroke which took her life quickly instead of these mini ones which only seem to add to her suffering. I know I may be judged by that statement but I vowed to share the real truth in this journey & that’s my real truth. I believe my stepmom is suffering. I know this is not the life she wanted. I wish her suffering would come to an end. I will miss her – but I will feel peace knowing she has moved on to a better place. I know there is a world beyond this – a world without suffering.

As I left, there was a resident standing at the gate begging to get in. Where Jane lives, there are several houses. The main house is where everyone enters. It is what I call the clubhouse. You must enter a locked door to get to the clubhouse portion of the house. The houses all share the same backyard & the area is fenced in. Each individual house has a locked door. At the back of the facility are 2 houses – behind an additional gate with a lock. Jane is in this back section. Not because she is a flight risk – but this is where the most progressed residents live (since they may be a flight risk). This resident was standing at the gate to get to the back. Luckily the gate opens towards the side she was standing so I was able to redirect her. She was trying to get to the clubhouse & was lost. I asked her if I could guide her to the clubhouse. She said yes & took my hand. We walked together & she told me thank you several times. She didn’t want to let me go once we got to the clubhouse, but Michelle was coming in with a resident – about to do her hair – and she helped me. You may remember Michelle is the hairdresser who comes twice a week to do the hair of the residents. She is kind & loving & I know gets attached to them all, just as I do.

As I left today, I thought about all the residents who have touched my life in the 3 years Jane has lived here. Some have moved to different facilities for various reasons, some have died. How will I feel after Jane has died? It will seem weird not going to the facility every week.