This is so hard!(1)

Saya_G

Just having a bad day. 

My mother took a 'turn' a little over a week ago. Hospice thought that she had a week, maybe a week and a half to live. She rallied and is better, still not where she was before the turn. Some days are better than others - none are great! Hospice says that she has nine lives, and they may not be able to give us much notice when she really is transitioning - especially since she’s had three health scares in the past few months, and has rallied each time. (I do realize that each health scare brings the inevitable closer.)

Today's visit was sad, she sat in her chair and hung her head during my whole visit. I tried to talk to her, but for the most part got no response, nothing verbal or physical. I asked if she was tired and wanted to lay down for a while, that got the biggest response. She weakly shock her head No! She made sure that I knew she did NOT want to lay down. She is a fighter, I wonder if at some level she thinks that if she goes to bed she might not wake back up.

When it was time for me to leave, she made it known that she wanted to go with me. She didn't say it, but she mustered up enough physical energy that I knew she wanted to go too. She tried to tell me something. I bent down and said, "do you want to stay here in your room, or do you want me to take you out to watch TV with the other folks watching TV?" She shock her head no to both options, then she whispered something about hell.

I'm not sure if she was telling ME to go there - because I won't take her with me or because I am the one that placed her into an assisted living facility (she's been there for close to a year, but has never been happy about being moved to assisted living); or whether she was saying she is going there herself (which I am sure she is not!); or whether she was saying that living in assisted living is hell!

Made me especially sad. 

She has dementia, but I truly think all her other health ailments are going to be a bigger factor with her passing. 

She is on hospice for dementia, which she was okay with, when the visits were home visits before she went into AL. Mom has always told us that she didn't want us to keep her alive if her quality of life ever got to the point that she can't take care of herself. She also told us to NEVER put her in assisted living! Said if we couldn't take care of her, to leave her alone to die!! Obviously when her care became 24/7, and we could no longer give her the care she needed - and since we were never going to 'just let her die' by herself - assisted living was our only option.

At times she is so weak she can't feed herself; she can't walk due to bad legs (that has been that way for a long time); she has chronic afib; congestive heart failure; she has a pacemaker; low kidney function (although still not needing meds for the kidney); is incontinent; she fell and broke her hip in August (had surgery); and she is in later stage dementia (that per hospice's best guess - I still wonder sometimes if she’s that far along). 

That said, she is a smart woman, has a very high IQ, so I think her mental function, even in later stage, is better than some - I'm guessing (or maybe that is just hopeful thinking on my part).

She always knows who I am, and when she is able to respond to conversation, it seems she still has a good handle on older memories. On the other hand, she talks about her mother, father and my dad as if they are still there and that they visit her or are going to come and get her - soon.

I am so confused as to what to think. I pray that being on hospice, which means less aggressive care, is the right choice. I do not want to cut her life short one minute past when SHE would want. 

That said, the life she now has is very close to the life she told us she did not want! This is so hard!!

I hate this disease!

Wilted Daughter

I agree it's hard and sad. Life is so unpredictable and no one knows the the hour of death or exactly what will be. We have beliefs, endurance, etc. that keep us going.

Watching someone slip away is especially difficult due to memories and feelings of helplessness. Don't feel bad about placing her as there are only a few options (live with family, home with full-time assistance, or placement (assisted-living, long-term care). I'm sure you made the decision with consideration of all things to the best of your knowledge. Sometimes in life decisions are made by events (hospitalizations, accidents, losses, etc.)

Regardless of what she meant by the word you thought you heard...continue to speak positive words. Let the light in you outshine the dark in the room/environment/her mind. Read poems, positive stories/speak about what is good in life. Believe and ask for a spiritual transition for you and her. If she is able, take her outside or look out a window and talk about the season change, activity outside, squirrels, insects, etc. She may continue to long to go but may be more at peace with staying. 

My words are meant to bring you peace not to harm or upset. Please accept them as intended and use them as you see fit. 

Linda. A daughter

Thank you so much for sharing this. I can relate to so many of your challenges and really appreciate your posts.

It is so incredibly sad to watch someone I love, who was such a good mom go through this. 

Who my mom was up until a few months ago, vs now, is so different. It's so hard to navigate what she wanted when she was her "real self" vs who dementia has made her become. 

I am so full of grief that there are days when it is hard to function. On the one hand, today was a "good" day because I was able to force myself to go to a yoga class for the first time in a long time. There are so many days where it is such a monumental task to get out of bed on a day when I don't need to go to work.

Saya_G

Linda,

Thanks for your reply.

It is hard. But you are right, we MUST do things for us too! Yoga for you, MahJong for me (I play once a week). I try not to talk about my mother during that time. I try to focus on other things that are going on in my life - positive things! 

Some of the ladies I play with have known my mom for years, so they want to know how she’s doing. So I usually give a brief update, then try to stay off my mother as a topic. I’m not always successful, I guess on some days I just need to vent! 

Today was a better day than yesterday for my mom. I was glad to have the time together, but know that tomorrow she could be in bed again, and almost comatose. I think the roller coaster of her days is one of the most confusing and stressful aspects of this terrible disease. I am always glad for days like today, but truly hate what tomorrow could bring.

Hang in there, I will try to do the same, we must keep in mind that we are not alone! This group is a wonderful support! 

Saya

Saya_G

Wilted daughter,

Thanks for your reply. As I mention in my post to Linda, she had a better day today.

She had energy, her eyes were full open, she was chatty and was pedaling around in her wheelchair with no assistance. She was smiling and was thrilled to see me, even if she didn’t really know who I was - she knew I was significant in her life, she just couldn’t keep it straight as to who I was. She must have told me a hundred times that she loves me. 

It was definitely a better day than yesterday! But I know tomorrow she could be back in bed, and not able to communicate. 

I appreciate your wisdom and will try to be more in the moment and appreciate the time we have, or even the time we’ve shared in the past. 

Saya

Linda. A daughter

Today was not a good day for my mom. Or for me. No yoga today. I hope tomorrow is better.

Amah

Saya

Like you,  I find the roller coaster ride with my AD loved one unpredictable and draining.  There are times when she seems to be in the "present" and tries to converse but stops mid-sentence  and cannot complete her thoughts.  She can still do many things for herself and is residing at home, however, the stress levels keep building and some days lead to shouting matches.  We can only hope that our LO remembers that they are loved and cherished and that we are trying our best to do what is right for them while maintaining our own sanity.                 Like you, I play Mah Jong weekly and it is my escape hatch.  Be well friend. 

Wilted Daughter

"After every storm the sun will smile; for every problem there is a solution, and the soul's indefeasible duty is to be of good cheer." -William R. Alger

Living our best lives requires the acceptance of challenges to meet/overcome problems for resolutions to pass on. - I said that