As most of you know Mom took her last huge step down in June. During a UTI she lost her ability to walk and has been in a wheel chair since. Amazingly she has made very few attempts to get up out of the chair or bed. We missed most of the "fall risk" stage totally. In a way it was a blessing.
Mom has had a cough/head congestion for a couple of weeks now. It has remained stable and so far no signs of pneumonia. But physically she has been very lethargic and disconnected most days. I have noticed a decline in both the cognition and physical well being. I noticed on Sunday that her urine was dark. I did my normal fuss about hydration but something just didn't seem right. I fed her lunch and she did drink normally from her straw. I went back Monday for an in house doctor visit. He assessed that she has probably aspirated and that was at least part of the reason for her cough. I was feeding her breakfast at the time and she was eating her eggs and soft sausage with bit of a pancake on the side. She did ok eating. But when I gave her something to drink she stopped eating. A few minutes later I realized she was holding the liquid in her mouth. She never did swallow it and ended up clearing out her mouth. I repeated that several times during the morning. She ate her mashed taters, soft country style steak, and gravy at lunch but again would not swallow the liquids. Another call to Hospice later we have now put her on thickened liquids. She is doing ok, eating about 1/4 to 1/3 of her meals instead of all of it, but not swallowing liquids. They switched her to thickened liquids for supper and I understand that she did drink some then.
Also she has had a place on her ear for the last few weeks that doesn't seem to heal. It has been determined that it is probably a basal cell carcinoma. To remove it will take extensive reconstructive surgery if removed.... so we are leaving it be.
So it appears we have taken yet another step downward..... despite the fact that it is expected and I knew it was coming sooner rather than later... it was still a difficult day.
Dear Deb, I am sure sorry to hear that. It is sure not easy to be helplessly watching the slow-mo decline. I guess the only consolation, if you can call it that at all, is that your Mom doesn't realize it herself.
Sorry that your Mom goes down further. It was what happened to my late FIL. It was the eating. He stopped feeding himself in April and things went downhill. He was sleeping most of the day. Probably he was bedridden except time for the meal in the cafeteria.
The time will come but we are never ready for it!! You have done the best for Mom. Sure hope Mom will be in this quiet setting without any disturbance. It would be a blessing that she stays with comfort.
It is hard during the holiday season... Praying for you.
Luau, no it is not easy but something we all manage to get through. Right now I want Mom to be comfortable. That is my prayer for her. I am blessed to have a phantastic Hospice team around me and a great care staff around Mom.
Himmy, we all learn something new every day as we traverse this bumpy path. As many years as I have been on this journey (with so many different people) I learn something new every day. Each experience is different but we all have elements in common. Information is critical to finding your own way through the maze of dementia. So just keep learning and know I will keep praying for both of us to find the energy, strength, and creativity to get through
I could use those prayers as well
The following user gives a hug of support to Gabriel: himmylover (11-20-2012)
For all the times that you have been there for me, Deb, I will keep you and your mom in my thoughts.
Take care of yourself, and follow the advice you so readily and supportive give to others. Although hard, and heart wrenching, it is just what we must do to receive the peace at the end for our loved ones and ourselves.
Be kind to you and know you are a wonderful daughter.
Oh Deb I wish I was closer to you to give you the support you so readily give to everyone, as I read your post it brought back so many memories, the next little while will be the hardest part do this cruel journey, you have been so wonderful to and for you mom and thou she may not be able to say so know that she would if she could. Now is the time to stay your course. You have prepared yourself as much as any one can, please be kind to yourself, spend that time with mom. I will keep both of you in my prayers that both of you find peace and contentment
Hug of strength judy
So sorry to hear this latest decline with your mom. You are always the "go-to" person for me, and I dont have any real words of wisdom for you regarding this. Just know that I will be thinking of you and praying for comfort and strength for you both.
I am sure this is one of those things that bothers you so much more than it bothers her. I agree with Luau - we need to take a tiny bit of comfort in the fact that they dont really realize what they are going through.
I hope you are able to enjoy your holiday, and be sure to take some time for yourself, you deserve it!
Thank you each and every one It gives me comfort to know you are all here! Mom was more alert today. She managed to drink a little of the thickened liquids last night, but she was holding even the thickened in her mouth at lunch today. I am sure it will be a roller coaster for a while but I do believe I am up for the challenge... with a little help from my friends here. In the mean time my best friend's mother is nearing the end of her journey and my favorite resident as well. As Dad would have said... "Just a rough patch of ground to get through!" I will see what tomorrow brings....
Love to you all! Deb
The following user gives a hug of support to Gabriel: jagsmu (11-20-2012)
Deb, I am so sorry to hear of the recent decline with your mother. It is never easy when dealing with this dreadful disease. Glad to hear your mother is more alert today. May you have better days ahead. Praying for you and your mother. May you find the strength within you to be there to care for your mother. Take care.
The follow up... it is not her ability to swallow but her ability to use her tongue and mouth. It's a brain disconnect... typical in this disease. She is chewing her food well but it is then being pocketed in her cheeks. If there is too much in her mouth she just holds it. But if I feed her thickened liquids, soup, or ice cream with a spoon slowly, she will get it down. So an order for puree food is on the way. I did find out today that she has lost another 6 pounds. That is 11 pounds in 2 months. She is down to 91 pounds. Yet she had a smile on her face today and was content. Except when somebody touched her ear. That got a stern look and the word OUCH!
Thank you all for your thoughts and good wishes... you are the best It is nice to be able to come somewhere when I get home and type to friends that understand....
Hi Deb. Haven't checked in for a while. Am so sorry to hear about the change in your mother's health. As many have said before me, you have been everyone else's rock. My thoughts and prayers are with both you and your mother.
There was a problem with the kitchen getting the puree order started so I had to be a little (ok VERY) insistent. I as there for breakfast (her first puree meal) and she ate it ALL! She went from a scowl to a smile. I stayed until after noon so I would feed her lunch and she ate well again. That put a smile on MY face! So half of my thanksgiving was spent with Mom and the other half was spent cooking turkey and fixings for supper. I am headed for a turkey coma and will go back to check on Mom later tomorrow
Thank you all for the support, prayers, thoughts, and encouragement. You are my rocks