Before we headed over Rhonda called me... it had been a few weeks since she had seen Cathy and the changes overwhelmed her. As she spoke to me she was in tears telling me about how weak Cathy is. She was unable to lift the hangers of clothes into her closet. The skin on her hands is so thin now... as if she is an old lady. It is so hard to see her this way.
On Saturday Rhonda watched the kiddos for me so I could spend more time with Cathy. When I got there she was in the main TV room watching I Love Lucy and laughing. She looked at me & looked back at the TV... no reaction. (my heart sank... I was prepared for this... but how can you really prepare for her not knowing who you are?!?!) I knelt down beside her & rubbed her back. She looked at me again. I took my glasses off & said, "Cath, it's me, Beth. Do I look better without these silly glasses?" And she smiled, stood up, took my hand & walked me to her room. I put in a DVD for us to watch (she is now mostly unable to use her TV, she cannot remember how to work it, & has had to have help many times getting DVDs jammed out of the slot. She crams up to 6 DVDs in the single slot)... Pride & Prejudice... of which we have watched together many times the past 3 years!! I slid a chair over next to her recliner and just sat with her for about a half hour. She rubbed at her hands. I noticed how thin her skin was as well. I asked her if she was in pain anywhere & she shook her head no... but then she rubbed at her knuckles. Her hands looked so frail, and her joints looked swollen... maybe her arthritis is bothering her? I took her hand and massaged it a bit. She just looked at me sometimes with a blank look and sometimes with a smile. It is as if she snaps in & out of knowing who I am. Maybe she doesn't know me at all. I feel as if for a few split seconds she does... such a guessing game. It is so frustrating she cannot speak to us... it takes me back to when our kids were babies & unable to tell us what was wrong.
I talked to her... I told her about our kids, our new home, Brad's job, Toby's family, Ryan's family... I tried to talk in short and simple sentences. Hoping that maybe she would catch a few things about what I was saying. (It is so hard to share our joys with her... when she cannot share them with us. For Example: Toby's youngest son just began to pull himself up on his own... he told me this & said how hard it is to not be able to share the joy of it with her.) Then she reached out for my hand and laid it palm up on her armrest. She spread my fingers apart and placed her hand on top of mine and just looked at me. I slid her fingers in between mine and held her hand. She smiled. (My heart broke again... once again wondering what was going through her mind at that very moment)
We sat for awhile longer and then she began walking in & out of the bathroom. (Each time she would get out of her recliner she would sway a bit... catch her balance) She would walk in to the bathroom, stop next to the trash can, face the wall, stare down at her feet, & then walk back out... not turning the light on. Hmmm??? guessing games again??? She did this a handful of times & I thought, 'maybe she needs to go to the bathroom?' So I got up and followed her in, turned the light on, & helped her. She laughed at me, sat down, & went 'potty' (sorry, I have little kids) for quite a long time. She did not have the strength to pull up her pants... so I had to help her with this as well. I thought... 'ok, she did, now it will stop.' But it didn't... she continued to go in & out.
I stayed about an hour and then Jean came with her sister for a visit. Jean was just as puzzled as I was about the 'in & out'. Maybe she was pretending to weigh herself? Maybe it is another one of her repetition things... Jean & Shelly said at Bingo she always covers all the numbers right away, but always uncovers 'O71' if it is on the card!!??!! We didn't figure it out. Then it was lunch time and she was off to lunch. I was thankful for having that alone time with her. Time to just be around her... even though it is difficult.
Sunday on our way out of town the kids & I stopped for a visit. Barb S. was walking Cathy down the hall when we got there. She wanted to go outside... headed for my van... I had the doors locked and she tried to get in and just looked at us. I felt bad that I didn't have time to take her for a ride... we needed to get home before dark, plus with the 2 kids it is hard to take her out now. With the help of Barb we redirected her and ended up going for a walk around the building. (She had already gone for a walk with Gayle, Rhonda, Larry, & Misty (her dog) earlier that day and gotten tired out... but she was off again!) She held the kids hands on & off. When the walk was over she went back to my van again... once again we had to redirect her to get her inside. Once back to her room we stayed a short while and then it was time for supper. When I have the kids with it is hard to make a 'speedy' exit... which is required in order to keep her from following you out. At one point she headed through her unit doors again, setting off the alarm again, & I had to physically block her & attempt to say something that would make her turn back around. It is getting harder to know what to say since I am not around her as much now... but what I said worked "Cath, I have to get the kids home for school tomorrow, & you need to eat supper. Lets go to the table to eat." She went from a cross look on her face & pushing me away to a big smile & laugh... spun around and headed to the table. (She changes so fast!) Barb & I rounded the kids up and headed out quicker this time.
Chase keeps saying to me, "Mom, Grandma tried to kiss me, but like you guys said her lips didn't move. But I know she Loves me!"
It was nice to have some time to visit with Rhonda, Jean, & Barb this weekend. I talked to Barb about the Hospice issue. We have all mentioned to Gayle about having Hospice come in. When he mentioned it at the home they said, "It would be a duplication of services." What?!?! To me Hospice would support the family, relieve the family & friends because they would know someone is available to visit her & help with cares. Plus the staff at the home is great... but they do not have the time to 1 on 1 with her! I didn't understand their view! But I didn't push it at the time. After going to Mayo with Gayle 2 weeks ago he rethought it... it was discussed at the meeting. He has been trying to get her Hospice now but hitting Brick walls again as usual with this disease!! The Dr. in LaCrosse says she doesn't need it yet?? What??? (He hasn't seen her in a long time... he wanted a swallowing study... I might just have to call the office... but I don't want to step out of my bounds. However I have met him a few times & I think he would understand.) And Dr. Boeve says she does! YES! But Hospice is unfamiliar with her disease and not wanting to help out. (What?! Can Hospice turn someone down?? As a nurse I cannot imagine telling someone No!! You just research the disease & become familiar!) And the Dr. in town doesn't want to get int he middle.... ARGH! Gayle has to feel so beat down by all of this! I mentioned what I knew of the situation to Barb & she agreed with me... Cathy deserves Hospice!!! She deserves to have all the care she can get! Things are changing so fast now!
So... tomorrow Brad will be heading over on his 1 day off a week. He is meeting up with Barb & they are going to see what they can do. You would think with how fast Cathy is going downhill she would be a Hospice candidate... swallowing problems, balance problems, incontinence problems beginning, etc... I am hoping that my next update to the Blog is good news... Hospice says Yes... Hopefully!
