Wednesday, February 29, 2012

Life Changing...

This past December 13th, I faced the hardest day of my life thus far. We had to make the decision my Mom was no longer able to remain in her home for us to care for. We knew this would be something we would have to eventually do...realistically we knew that, but, emotionally it is something our hearts fought against tooth and nail. Mentally and realistically, we knew her care was beyond what we could handle on our own, but we struggled with how do we stop physically caring for her and how do we trust others to care for her and for others to be compassionate towards her through this final phase of the illness. For me personally, I felt like I was failing my Mom and letting her down. But all the love I have for my Mom, wasn't going to make her better or make caring for her and meeting her daily needs any easier. Accepting the care I could give her was not what was in her best interest, was beyond difficult.

When we took my Mom to her specialist the day before Thanksgiving, her doctor told us it was time we started to actively look into alternative care (a.k.a. a nursing home). He didn't feel it was far off, and we knew it wasn't far off either. Her emotional outbursts were becoming more frequent and she was becoming more aggressive as each day passed. Getting her to take her pills was becoming increasingly difficult and these were pills she needed to help control her aggression. Trying to reason with her became even more challenging and each day just more and more of a struggle. She was seeing things that were not there, relationships between how she was related to us, more and more confusing. She knew who we were, but unsure often of how we were related. When we left my Mom's doctor I knew this was truly the last year we would be celebrating the holiday's with her in her home. Thanksgiving was bittersweet. I couldn't help but look at her sitting at the table on Thanksgiving, knowing this would be our last Thanksgiving with her in my home. That day for me was difficult to say the least. I remember the past few years thinking I wonder if this year will be that last, but then we were blessed with another. This year though, I knew this would be the last.

After Thanksgiving, her behaviors worsened. Her doctor put her on a new medication to help control the aggression and that made her tired, but still she became more aggressive. On the day my step-dad, my brother and I were to meet with a woman who helped families start the process of looking into alternative care, we were just about to leave town, the adult center called my Step-Dad to come get my Mom. She was not allowed to stay there the rest of the day because she had become aggressive with the staff. So, my brother and I went to the appointment. To hear the words that my Mom needs to be put in a nursing home and that it was time for her, I felt my heart break into a million little pieces. Watching my brother cry as we faced this reality, there are no words for it. When we got home, we were just hoping to make it through the rest of the holidays. Each day I hoped and prayed for just one more Christmas. If we made it to New Year's great, but at least give us one more Christmas.

On Tuesday, December 13th, my step-dad called and told me he didn't go to work because of things with my Mom. He couldn't get my Mom to take her medicine and asked if I'd come over to help and see if I could get her to take her pills. When I got there my Mom was so mad. I could tell my Step-Dad was at a loss for what to do and his patience was wearing thin. Which for anyone who knows him, knows he is the most calm, easy-going person you could ever meet. I felt so bad for him, because every day he tried to make her life happy, and as easy and stress free as possible. My Step-Dad went outside while I sat with my Mom trying to calm her down. I sat with her at the table and just talked calmly too her. Reassuring her that I loved her and that everything was going to be ok. I made her some lunch and let her know I would never do anything that would hurt her and I talked with her about how her medicine just helps calm her down and makes her feel better. I promised her I'd never give her any medicine she didn't need. I finally got her to take her medicine and I stayed with her until I had to get Ava from school. At that point, my step-dad and I thought she would get tired and nap for awhile. I talked with my Step-Dad for a few minutes before I went to get Ava and he said he didn't know if he could handle anymore and told him I would fully support his decision and if he felt it was something he could not do anymore, then we would make the best decision for her. I told him to call me if things changed.

After I got Ava, we ran some errands and went to my aunts. I'd left my phone in the car and when we left my aunts I saw I had a message from my Step-Dad saying he was taking my Mom to the hospital. So I dropped Ava off with my nephew until her Dad could get her and met my Step-Dad at the hospital with my Mom. Walking into the hospital was horrible. Seeing my Mom waiting in the waiting room and no idea what was going on, was a moment I don't think I'll ever get out of my mind. The experience at that hospital though was horrible. They treated her so unkindly and like she was a crazy person they didn't have time for. The idea of having to do this to your parent is emotionally overwhelming as it is, and the way they took to the situation was beyond reprehensible. So, in the mean time my Step-Dad was on the phone with her specialist and because of my Mom's behavior he wanted her in the hospital that night. So, he wanted us to take her to Springfield about 35 minutes away. My Step-Dad drove her over in their car, while my brother, sister, and I follow over in my brothers car. My Mom had no idea what is even going on. How do you even tell her and try to make her understand. I cried almost the entire way over. In disbelief this was even happening. Feeling like I had let her down in so many ways.

Once we arrived at the hospital, I have to say the staff in the ER could not have been more amazing with us. The way they handled the situation was a thousand times better. It didn't make the whole experience less painful, but at least it didn't add to our pain. We were in the ER for many hours. My Mom was scared because she didn't understand what was happening and we didn't have the words to explain what was really happening to her. How do you tell her she isn't ever going to go "home" again when they are not able to understand what you are trying to say to them. She kept talking to my sister, brother, and me and she kept asking us if she had been a good Mom or saying "I was a good Mom wasn't I?" And then she would say "I love my kids. There isn't anything I wouldn't do for them." We kept telling her she was the best Mom we could ever have and that we loved her. We held her hand and we couldn't help by cry. I think somewhere inside of her, there was a very small part of her that knew. Maybe not in the way we understood what was happening, but she knew there was going to be change. When it was time for her to go up to her "room", we said our good-byes and told her we would see her soon. The leaving was hard. If I had known that afternoon was the last time I'd spend time with my Mom in her home, the errands would have waited. I would have stayed put, just holding her hand and telling her how much I love her.

After we got back in town around 5 a.m., I went to my sisters and I finally just broke completely. We both cried and cried and then cried some more. To explain it for myself it felt like grieving the death of a loved one. After being at my sisters for awhile I knew I had to make my way home. I was dreading that drive because the way home leads right past the last place my Mom worked before having Alzheimer's. I used to meet her there for dinner sometimes with Ava or meet her after work and we would go shopping. Or I'd meet her there before she had to go in so she could see Ava for a few minutes before work. Driving by there was so difficult. Then, pulling onto my street and knowing she lived in the building behind mine and she wouldn't be coming home. In that moment, I hated living where I do. I ended up crying myself to sleep. Then I'd wake up for a little bit and cry until I fell back to sleep. People would call or text and I just couldn't face taking any calls or answering any texts, so I turned my phone onto silent. I just wanted the entire world to go away and let me grieve. I know I'd never felt more alone in my entire life, than I did right then. The world doesn't stop though just because we feel like our world has been shattered.

My Mom ended up spending almost 2 weeks in the hospital before we were able to get her moved into a nursing care facility. Christmas was very difficult. It was hard watching Ava open her presents and my Mom not be there. We had my Step-Dad over that morning, but things were just not the same. The most important person in my entire life wasn't there to share this day with. We ended up going to see my Mom on Christmas at the hospital but I most definitely missed having her at my house for Christmas dinner. I am grateful we at least had one last Thanksgiving dinner together. We did get my Mom moved the day after Christmas to a place that was only about 10 minutes from us. Unfortunately, that place was not a good fit for her and we were fortunate enough to get her into a nursing care facility that had a unit specializing in Alzheimer's care. They even had a bed available for her. So in mid January she was moved there. The care she received there is excellent and the staff is so kind and caring with her and the other residents. The only drawback is that it is an hour from where we live. She continues to decline quite rapidly and her aggression is still there, as well as more and more confusion and seeing things that are not there, but we know she is getting the care right now that she needs, that I know we would not have been able to give her. This phase for us as a family is difficult emotionally because we grieve for the loss of the quality of life for her and we just wish her peace of mind more than anything. And right now that isn't something she has, nor do we when it comes to handling this illness.

I struggle with understanding the why and how of all this lately. How at 35, 34, and 30 are we supposed to put our Mom in a nursing home. My Mom is only 56 years old. We should have more time with her as our Mom and not a Mom who has Alzheimer's. She has 6 grandchildren all under the age of 14. We still need her to guide us through the teen years and to watch her Grandchildren graduate high school, to get married, to have babies of their own. At times, I still feel like a child myself and here we are faced making decisions that should be at least 15-20 years away for us. I know I should be thankful that I have had the years that I have had with her, but there is that part of me that wants more time with her. I want more memories with her. I want more pictures with her and of her. I want my daughter and my nieces and nephews to know her and to have her in their lives for many more years to come. I want to spend time with her being silly and to hear her laugh. Oh how I miss her laugh. I want to share the every day kinds of things with her. I want to have a conversation with her that she understands and also remembers having with me. Most of all, I want her to look at me and know who I am and to know she is my Mom and I am her daughter. I want her to remember me and the day I was born and when she held me in her arms for the very first time. I want her to remember that she loves me with everything she has.

One of these days maybe I will be able to accept the why and to better understand the how come of all this. For now though I just pray for strength to get up and face each day and the challenges that come my way.

1 comment:

  1. Mandi, this has got to be so difficult for you and your family to go through. I pray for comfort, it's a difficult decision to make, but it is the very best care for your mother in her condition. I also pray for a cure for Alzheimer's. (((Hugs)))

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