Connect
Comment receiving replies
This will be my last post today and maybe for a while. It is this: My wife and all the 'other' Dementia patients where she is are in a living 'warehouse', waiting for the inevitable. But no one says, tells you how that's going to come about, how or when it will happen. Everyone in the home behaves differently. So there's no consistency, nothing to point to, to confirm their status, their stage of their disease. It's up to the family, loved ones, or just the professional caregivers to determine when the end is 'near', when the person has reached the final stage. I sure as hell don't know. No one talks about it. It's the goddam biggest elephant in the room! But everyone on that side of the desk ignores the signals, the signs, the little hints that something has changed or is changing. So my quest to people, especially spouses of people with Dementia is: from your experience is there a sign that they are closing down? Do they stop eating? Stop walking? Sleep more? Sleep Less? I don't know what to expect and no one is telling me anything, including the Alzheimers Society website. So shoot me but I am pissed off. Let's stop tip toeing around the big question especially once your spouse has reached a certain stage. I will let the reader guess the question.
All I really want is the truth so I can prepare myself, my family, our friends, for what comes next.
Bon soir mes aimées.
Replies to "This will be my last post today and maybe for a while. It is this: My..."
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.
Connect
Good evening @mnitchke This is Scott and I guess I was 'lucky' (absolutely stupid word to use) my wife was in hospice care. They spoke of the aspects of death, what to expect, and that fact her condition was going to end in death every visit. There were no wizards behind the curtain, no skirting the issue. It was up front and in my face every day.
That said death is as unique and individualized as a disease is within a person's body. There was no time frame, no map, no guesstimate as to what or when. Yes she ate less, the body needs far fewer calories and has to focus on the critical uses of energy for the heart and lungs and brain. Sleep more -- yes my wife did. But she was only one person out of many.
In my wife's case to be honest her death was horrific. She didn't eat for 56 --- yes 56 days! Longer than any patient ever in our hospice program. She drank nothing for the last 12 days. Also longer than anyone had gone before.
No one knows and I understand medical professionals' reluctance to guess at what will happen. I heard from nurses about folks who got very angry if their patient lived longer than someone guessed or shorter. It is an unwinnable proposition for the medical personnel. Plus it is ever worse on the patient (if they are cognizant) and the caregiver and family members.
I know in our society we expect medicine to be a total science and we want a pill or something that will act in an absolute manner. It is not so. There is still much that is unknown in life as well as in death. In health and certainly in sickness.
I realize you said you were signing off, but I offer my experiences here anyway.
Peace and courage!