I’m so sorry that you are going through this. I see your pain like I see my dad’s pain. He took care of my mother for 64 years. Ten of those years were not pleasant as she had a form of dementia that caused her to change her whole life and become angry and verbally and physically abusive to my dad. She spent the 1 1/2 years in a memory care unit. She was well taken care of and had family there every day. Dad was so distressed that everything that they had worked for was now going to pay a $300/day care fee for mom and he was devastated that he could no longer care for her. He would sneak down to the unit and watch her trying not to let her see him as he did not know how to communicate with her since her language was now foreign to him. It was hard for him to visit because the five years prior to that mom was always yelling at him and tearing him apart verbally. Even though meds had mellowed her out he didn’t know what to do. He wouldn’t visit her at all for close to 2-3 months after being in the unit. He grieved for months after putting her there. Now he grieves because we lost her the end of June at the age of 86. My dad is 91.
Is there any way that you can attend a support group in your area? My dad was so hard of hearing he couldn’t go but I feel it would have helped tremendously. Just to be able to voice your concerns and for you to know that there are others out there that can help. This forum is great but it still is not that one-on-one contact that we all need. I belong to two support groups. One is an Alzheimers group that meets monthly at a care facility near where I live and the other is a group of ladies that got together because of a care giving class that I attended. This is where I found out about the stages of dementia and what the dying process would entail. It really helped when the time came to understand what was going on. I went to a hospice meeting about the dying process that really helped. What we didn’t know was….that it would happen so quickly. The doctors or nursing staff did not help as you know. Is there someone from church that you can visit with.? A friend that you can call? I have a high school classmate that has stage 4 ovarian cancer that has helped me more in my struggles than I could even help her!! Is there a senior citizen group that you could get involved with? Check with your facility as to where meetings are.
We had a “care” meeting every three months and met with social workers and staff from the unit. We could ask questions about mom’s care and vent frustrations with them. Sometimes the staff on duty really can’t say a whole lot. Here we could hash out things that were bothering us. If you haven’t had a meeting, I’d suggest that you ask for one. I think that they are required to do so.
One of the things that really surprised us was how well mom could hear and understand what she heard even though she couldn’t communicate. She could say “grace”, recite the Lord’s Prayer, 23rd Psalms, and sing songs. Coloring was the only activity that she enjoyed doing with us. She could read aloud but HATED to be read to. I so wanted to sit and read the Bible to her but she wouldn’t allow it. She’d scream at me and hit me. Only when she was dying could I sit and read. She heard every word. There were tears in her eyes. Somewhere in that “diseased body” my mom existed and once in awhile I’d get a glimpse of her. I would cherish EVERY second of the glimpses and will hold them close to my heart. Don’t dwell on the dying…..dwell on the living. I miss my mom so much. I would never want her back the way she was and know that she is resting in God’s arms. He’s taking care of her now just as he took care of her since the day she was born. Cherish each and every day.