Mom is late stage(hospice evalutated her at stage 7A) dementia. She is now on Hospice. She no longer walks, barely speaks words other than "yeah" and now no longer able to eat. Mom is hungry but she can't seem to figure out how to open mouth up to get me to shove some baby food in her. She locks down her teeth and won't let food in. I try my best to push food in around her gums with either my finger or a tsp but then I gotta fight to get her to swallow. Its sad when mom says "Hun, Hun" ,but no matter what I do she won't allow her jaws to open. Which in turn I get upset and than that makes her upset.
I have always been against feeding tubes. But seeing her hungry and can't eat really gets to you day in and out and makes one question.
If anyone has some suggestions or has dealt with this let me know. I am the lone caregiver making these decisions with mom, no help from siblings. I have always thought I had things under control with mom and when the end came I would know what to do. But now seeing her at the end I am lost. I think reality is hitting hard and I am trying to hold on super tight to her. When I know in my heart she needs to go home to the Lord and be with my dad(her jusband of 44 years) in heaven where she won't suffer no more.
Since Jan of this year mom has had UTI periodically. 3months ago she started "holding" her bladder. I really don't know how to explain it. She would drink water all day long and maybe only urinate once in 24/hr period. I had to rush her to ER many of times to be cathed cause her bladder was full and she couldn't go on her own. 5 weeks ago when she went ER with a full bladder she was in beginning stages of sepsis cause of urine retension. During ER's testing doctor was concerned mom might have menigitis. I left them do a Spinal Tap on mom. I swear if the spinal tap was done wrong and this led to her instant inmobility, I will never forgive myself. During hospital stay and moms condition was rapidly progressing, thats how Hospice came into play. Other than that my husband thought maybe mom had stroke but tests came back negative? But thats not to say that she couldn't have had one after testing. She has "drop foot" in both feet now. She she showing temors and extreme tightness to left side. Her hand curls in and I can barely straighten it out. Thats why we are so stunned with the progression. It happened so fast.
I will keep in touch. Hopefully, my experience when help guide someone else through such a difficult time. Thanks for caring!!
The poem was beautiful. I am going to copy it if you don't mind... it spoke to me about Ruth... hugs to you...
May your efforts to give comfort be successful.
"God Saw You Getting Tired"
God saw you getting tired,
When a cure was not to be.
So He wrapped his arms around you,
and whispered, "come to me."
You didn't deserve what you went through,
So He gave you rest.
God's garden must be beautiful,
He only takes the best
And when I saw you sleeping,
So peaceful and free from pain
I could not wish you back
To suffer that again.
- Frances and Kathleen Coelho
Luvmom, this stage of moms dementia came on practically overnight. 5 weeks ago mom was still walking(with assistance) eating semi solid food(with assistance) and eating soft cookies all by herself holding the cookie to her mouth. She went into hospital, 3 days later she was a different person. THAT FAST!!!! My husband and I has watched her progression go in about 3 month or so intervals, will slow decline. This was so fast, that 5weeks later we still can't comprehend what happened. And as the days go by now the worse she gets.
Hospice likes their Morphine but I told them up front ONLY as needed I will give it to her. Mom is Opiod tolerant so she requires more than normal dose of Morphine to comfort her. I don't want her sediated but comfortable.
My husband has never been emotionally attached to my mom. But now, I see all this is even affecting him emotionally. He is worrying himself about how to get her to eat.
I am lost for words. ....
I feel for any caregiver who did or is going thru it.!!
Jeanne and Ladee are aware, caring ladies, friends around you here. Try not to think, just get in touch on spiritual level and have a talk. You relax, give Mom your blessing to go when she needs to. These are the mysteries of life, which someday we will understand. You are a loving, devoted daughter. Don't fight anything, my friend. Big Hugs, Christina
But whether you are ready or not, this will happen. Your mom will pass on. You are doing your best. You can take satisfaction in that. Even your best will not prevent your mother's death. That is coming. You feel like you need to do more. Perhaps you need to assure her that she is leaving you in good shape. That you will carry on and be fine. You will miss her but she will always be part of you. That she can leave when she is ready.
Hugs to you.
I should be used to this, I worked in home health for years and seen ones pass on. But when its your parent or loved one its a whole new ballgame. I just feel like I need to do more. I am struggling with giving her over to God. I need to accept things for what they are now. But I feel like that means I will be giving up on her. I have became so overprotective of her and have put her first above husband and kids. I will be lost when she passes.
If she is in the final stage, on Hospice, she is dying. That is a hard reality to accept, I imagine. Getting her to eat might prolong her living, but it will not improve her quality of life and won't prevent her from dying in the near future. I understand that at the end many people stop wanting to eat and may refuse to open their mouths to accept food. Since your mom has dementia it is hard to know whether that is what she is doing, or if she wants to eat and just doesn't know how to accomplish that.
Again, what does Hospice say? Hugs to you as you face this incredibly difficult journey to the end.