It's been about a month since I posted on the "I'm scared" thread. Several of you offered support and concern for my situation and I wanted to give an update on where things are with me, my DH, my parents, and my son. Things were not so good a month ago with everything crashing around me but I feel as though I am slowly coming up for air despite ongoing events.
First, my parents... my sister and I were able to secure a young lady to come in and take care of them 5 days a week for 8hrs a day. She takes my mom's blood sugar 3x/day and gives her the insulin shots. Since we have her there til 5 she can do the dinner shots also. She also drives and has been able to take my dad to the doctor also. He fell and has not been able to drive and she has been a godsend taking him to get his xrays, MRIs and take my mom to all her appointments. It's expensive and they don't have insurance but my sister and I managed to go through their budget and make up half of it from my parents money and the other half is being paid between me, my sister and one of my brothers. He does not live here but is able to contribute some money. My other brother has the weekend duty and that is his contribution since he is not financially able to contribute. The Caregiver bathes my mom, helps them shop and also cooks dinner. She's also managing to make my mother exercise. She keeps me and my sister posted on anything that happens and takes notes of what happens during the day. She was recommended to my sister and she truly is a gem and we were lucky to find her. This has made a HUGE difference just knowing someone is there and can tell us what is going on. What we have found is that they are both declining and worse than maybe we thought. My sister and I were able to get POA over Christmas, including healthcare surrogate and advance directives all signed for both of them. We are now in the process of looking into VA benefits for my dad.
My son... some of his grades are better but I got a letter from the school about his math grade threatening his ability to graduate high school. I have been all over him about it to no avail. I talked to his sister about it and she spoke to him also. I pleaded my case with her that I needed help because I was in this all alone. She came through the other night with a tutor for him. It's actually her college statistics professor who also tutors on the side and offered his assistance. I will be contacting him tomorrow about setting up some time. My daughter really likes the way he teaches and thinks he will do well for her brother. Spanish is another story. Reached out to her to inquire about his progress and he is way behind. This is an online course. I will have to talk with him about this. This can also jeopardize his ability to graduate. I know he's still having a hard time but he has to do the work. I'm going to have to get tough with him again on this. These are the only 2 classes that are bad and threatening his graduating from high school. But... my baby boy had a dozen roses for his mother on the kitchen counter when I came in on Valentine's Day. I hadn't even been thinking about it at all as I had gotten ill with the stomach flu the Sunday prior. He's always had a good heart and I'm a bit weak with lowering the boom on him. I will though, as I must.
My husband... Sunday around noon (before I became sick), I get a call from the ALF saying Doug's blood sugar had dropped to 27 and he passed out and they couldn't get him to wake up. This was very unusual because this was after he had had a big breakfast. They were calling 911 and needed to let me know. He eventually woke just before the paramedics got there but the dr wanted him to go to the hospital to do some tests and make sure nothing else was going on. We were there all afternoon until 5:00. As the afternoon went on, his blood sugar continued to rise as he ate and drank more to get his sugars up. It was good that I was there as I know he was calmer with me there since he didn't fully understand what was going on. He went back to the ALF with orders for blood sugar checks every 3hrs to make sure it remained in good territory. I already had scheduled my appointment with the dr to talk about hospice that following Wednesday, 2/15. I met with him and discussed how Doug has been declining, things he is no longer able to do (speak), and how, now he is beginning to become unsteady when he walks and has slowed significantly, the loss of urinary/bowel movements, etc. He talked with me about thinking through if I want to focus on keeping him comfortable vs any aggressive treatments. I still am thinking through this and he encouraged me to do my research. All in all, it was a good talk and I'm glad I was able to ask all my questions. Then it's Thursday and I get a call from the ALF that Doug was found on the floor of his room when they came for his dinner blood sugar check and had banged up his nose and forehead. They said all his vitals were good and his sugar was high though. They bandaged him up and he ate his dinner. I went to see him yesterday and he seemed almost "ashamed" because he wouldn't look at me. I kept saying hello and trying to hug on him but he seemed very reluctant to look at me at all. I sat with him while he ate and his appetite was good (as it usually is) but he was out of sorts. I sat with him in his room and talked for a bit holding his hand and rubbing his back. When I said I needed to go home but I would see him soon, that was the first time he smiled. I left and went home not really knowing what to do with how I felt at that moment. What was he thinking? I don't know. I did tell him it was all ok but I don't know how much he understands me now.
As for me... I'm on autopilot a lot. I go to work and do what I need to do. Some people there I have told and they are supportive but I don't' talk about it much. Work is an escape of sorts, a distraction if you will, albeit with lots of responsibility and accountability. Nonetheless, a distraction and intellectual stimulation. I've been getting really depressed and sitting around a lot not doing a whole lot of anything when I'm not at work. I have no life to speak of although I know I need to get one. I just take one day at a time. Take pleasure in the small things. I've cut myself a lot of slack but I need to do something a little more regularly so I can get back amongst the living. I feel I'm in this limbo waiting for the bomb to drop. Sunday with the blood sugar drop and him passing out was my first test run. He was diabetic when we got married and I always thought that would be what would take him from me ultimately. Alz was never part of that equation. Now, there seem to be two ticking time bombs. I'll think about Hospice some more as I want to do what's best for him. It's just all so fast and I feel ill prepared for what comes next, but for now, I'm coming up for some air...
Breathe deeply Sass, it sounds like you will need a lot of air to keep you going. That was an incredible tale that you told above, I am so sorry that you have to go through so much. As someone here says,(Mary, I think) arms around you. Take care.
Wow, Sass...unbelievable. You are doing a fabulous job of holding it all together. I agree that work can be an escape in a way--of course it is tiring and crazy-making--weirdo co-workers, maniacal bosses, ha ha--but it does give you a change, and keeps at least one foot in the real world. And you have to shower and put on an outfit and makeup and have clean hair, so work does keep you on a normal routine--you can't just go hide under the bed with the dust bunnies--no matter how much you might want to.
I was just thinking about online courses, because I got my Masters that way. Try to encourage your son to sit down to the computer early enough in the evening so he's not actually too exhausted to do the work (falling asleep in the chair and sliding semi-conscious to the floor doesn't help the old GPA)...and whatever it takes, during the time he's working on his Spanish, he needs to stay off the Internet. Easier said than done, I know, but it's the only way you can get anything done. You have to be a little tough with yourself. And no playing computer games either. (Ask me how I know all this...lol) Tell him to remember the magic word BOCHOK. Bochok, Bochok, Bochok. Butt On Chair Hands On Keyboard.
Do keep us updated. I'm thinking of you and your family tonight.
Sass! HELLO. Glad to see you coming up for air. Been worrying about you. Wow, you have made so much progress. And so glad your sibs are helping with the folks. I just can't imagine dealing with all that at once. You are Superwoman. HUGS
Cassie, elizabeth and bhv, Things have been crazy, I'm not going to lie. Thank you for all your support. It really means a lot. What I am looking forward to now is a summer vacation with all my children and their spouses and my twin grandbabies! I'm going to rent a big house for all of us to be together at the beach. I find this helps me to be around all my children, I enjoy their company and we have a good time. It will be a nice escape and good for us to be together for a whole week just relaxing. It also helps me to see how they are all coping with their dad progressing.
As for the other, I will take one day at a time. My hardest challenge is getting out of my depressive hole that sucks me under from time to time. I need something to look forward to and something to motivate me. I'm not superwoman, rather I have always been able to forge ahead to do what must be done. It's afterwards when I fall apart or at least give myself permission to. So on the weekends I hide away with the dust bunnies Elizabeth, but on Monday, I get cleaned up, put my makeup on, put on my professional work attire, and put on a "happy" face as I go out into the world. I'm just so glad I found this site. It truly has been my lifeline.