I have ran out of things to write about. In my earlier post my mind was full of things to share. But now everything is at a stand still. We are all just waiting for Mom to forget how to swallow. Or stop going to the bathroom. If she can't swallow anymore we have to make the choice to stop feeding her or put a tube in her tummy and feed her that way. And if she stops using the bathroom. We will have to start putting in a catheter. The nurse would have to come everyday to change it and clean it I guess. We are waiting for mom to get fluid in her lungs and she we come down with pneumonia.Or if she gets an UTI. I have to decide if I want to give her medicine to make her better or just let nature take it's course. Moms nurse said many Alz's patients die from Urine Track Infection's.
She will start losing weight no matter how much I get her to eat. She will get pressure sores even if I turn her every hour because of her skin breakdown.
We are also waiting for when her brain forgets to tell her to take a breath or tell her heart to take a beat. All these things the Hospice counselor has told me might happen. Do I send her to the Hospice Home to finish out her days when these things start happening or do I let her stay home and hope she goes peacefully in her sleep. It might be months or years before any of these things happen but it could be tomorrow. It is just a waiting game now.
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The Early, Mild to Moderate and Advanced stages of Alzheimer's in the brain.
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Oh Karen..... your post breaks my heart for you, your mom, and for all of us struggling with this awful disease.
ReplyDeleteYou're in my thoughts and prayers!
Love,
Dolores
Karen, hugs from me from across the internet miles. No matter what decision you make. It will be the right one. You may question it, but you have cared for your mother & you are to be honored for that. Just as she made decisions in your care as a child, it is your turn now. Make the decisions as time presents them. Try not to worry about them before their time.
ReplyDeleteBeckie
oh this is hearbreaking, i am thinking about you, as always you are so inspiring
ReplyDeleteKaren,
ReplyDeleteI am here via Victoria's blog (Confessions of a New Old House Owner) and spent some time today reading some of your posts. My mother is in the early stages of alzheimer's -- she is not well enough to live on her own and I moved her in with me June 08. I take it one day at a time. If I look too far down the road I get overwhelmed with grief and frustration. I agree with the commenter above, when the time comes to make such decisions, listen to your heart and hear HIS whisper. You will know.
Sending love and support,
Deborah
My father can no longer count on his normal bodily functions to work. If he new he wore a diaper he would be humiliated. He was always so strong and able.
ReplyDeleteThinking of you...praying for God's mercy.
Love, Rebecca
Thanks all.
ReplyDeleteWell you know you have a support system even if it cyber support. We all keep you in our prayers.
ReplyDeleteMom has gone through so many changes this past year that it made my head spin. In 2008 she could dress/undress, feed herself, drink, walk with her walker, use her potty with minimum assist, converse fairly well, slept in her regular bed and so on. Since spring of last year, she has been 100% care, and I have hospice assist. The dementia threw her into the last stages very quickly. She is still often alert, even funny with a few words. But I do it all for her, and have for awhile now. As of last month, her eating has decreased, there has not been any drinking since last year, she has been in depends that long too, her legs are constricted and do not straighten out all the way. We have an electric bed with air mattress for her too from hospice. One of the hardest things I have dealt with the last 4 years has been accepting the changes soon enough and adapting to them by making different changes in how I care for her.
ReplyDeleteWe all support you Karen and know you will make the right choices for your mom if those changes take place with her.
One of my moms friends is always saying to me "Don't borrow trouble." Sometimes this is the best course of action in a uncertain situation. Enjoy what time you have left with your mother, and when the time comes you will know what the right answer is.
ReplyDeleteMy own experience tells me that having your mother in hospice as she nears the end of her life here on Earth is the most humane, best thing for family that folks can do. But ultimately, you have to listen to your heart and do what it tells you.
ReplyDeleteThanks guys. You all make me feel so much better. My mom and ladyd's are the same except mom still drinks. Her left leg is constricted and the right is getting that way. Everything else is the same. I believe when the time comes I will take her to the hospice home. I don't really want the memory of her passing here for my son. This is the only home he remembers we have lived here almost is whole life and I want it to always have good memories. God Bless you all and I will stop dwelling on what might happen and focus on the present. Good advice as always.
ReplyDeleteYou know Karen I think the hospice home is a wise decision. My dad died in the living room of my parents' house in a hospice bed...and I still think of it when I'm in that room. My daughter and son-in-law purchased the house and so I am there often...and I wish Dad had not died there. This is a highly personal decision and everyone responds differently, but I just wanted to say a word in support of your decision. Your mom won't know she isn't home. My dad didn't know. He kept asking to go home--and finally the Lord came and took him there!
ReplyDeleteEveryone has said it all. My heart goes out to you too and I agree that you will know the right decisions to make.
ReplyDeleteAs always you and your mom are in my prayers daily.
Karen,
ReplyDeleteI can only tell you from my point. As you know I suffer from AD and FTD. It sounds to me that mom is in the final throws of our disease. I have said as long as I have the ability to know, I will not reach that stage. See in my 40s I made that decission working in accute care facilities watching people like your mom and how I am slowly becoming. God did not mean for us to live that way, my own opinion and belief. You face some difficult choices NOW. not in weeks, days or years. Watch the HBO Memory The Loss Tapes if you can and watach Uncle Chuck, his final moments. Better at home or with those who handle this with grace and dignity. Me I would rather be in a hospice and lessen the already unbelievable burden on my family. Let him who watches over us guide you, he will if you ask. You have to let go as your mom has already done, not by choice but by the devestation of this disease and take great joy in the knowing that she will be freed from this in God's time and the joy she will know. Stay strong for your moment of sorrow and know that it to shall pass.
God Bless,
Joe
Oh Karen I am teared up at this. I had the same thoughts about my mom - worrying when she'd forget how to swallow or breathe and it almost made me stop breathing just because it's so hard to think about. You will cross these times when they come. You have lots of advice and support available.
ReplyDeletethank you , So many nice words and so many great comments and ideas . I can use them all.Thank you for the prayers.
ReplyDeleteMy dear Karen, after reading your posts I wanted to tell you that nothing is harder than this. My wonderful Mom passed away on the third of January. So sad, so hard,nothing I can say will make you feel better. I spent a lot of time with Mom, feeding her, changing her and watching her slowly slip away. I kept telling her to go, be with God and her family in heaven and then the voice in my head was literally screaming don't go, don't leave me Mom. Now I am sitting here typing this with tears running down my face knowing that she is better now and for that I am thankful, all the while screaming in my head, come back Mom. God bless you and give you comfort.
ReplyDeleteHi Karen,
ReplyDeleteMy heart goes out to you as you face these decisions. Even though I knew that my mom was in the later stages of the disease, her death took me a bit by surprise. I had read that forgetting how to swallow was one of the very latest stages. I thought my mom was doing pretty well (all things considered) and then one day she had this unexplained itching. The next week she started storing her food in her cheek and then couldn't seem to swallow anymore. A week later she was gone. She was able to stay in her assisted living apartment with my son and I by her side until the end. Hospice was a great help to us during this time.
I know that whatever you decide will be the right choice. My thoughts are with you.
My mother died in Feb 2007 after a long battle with Alzheimers, so my heart breaks for you as I read your words. I have been where you are and where you are going. I remember it all too well. I felt so guilty just waiting for God to come and get her; then I felt guilty because I was so relieved when He did. Time has acted as a balm and healed a lot of my hurts; I don't feel guilty anymore; I KNOW she is better off now, so I am happy her battle is over. I will keep you and your mom in my prayers and also pray for an end to Alzheimer's so that others won't have to endure the suffering.
ReplyDelete