Well I did it…

mommyandme (m&m)

…against my better judgment.  

The very rare occasion arrived that all moms six grandchildren were here.  My husband and I decided to have a BBQ gathering with the fam.  I thought that getting mom out in her wheelchair would be a good thing.  I curled her hair, put lipstick on her and off we went.  After all, it’s only just around the corner to my house from hers (since going thru the back yards is difficult in the wheel chair).  Started out well enough.  She ate, watched people, although she really didn’t know who anyone was and was seemingly a bit concerned about what was next. Also for the most part, the 20 and 30 somethings had no idea how to interact with her.  My vision of a beautiful family gathering was a bit low but nevertheless I was very happy we were all in the same place.  Helped me visit with everyone at least.  Me Me Me!

Then, she apparently was in pain or stressed or who knows because she had a syncope episode in her chair. I was just in the kitchen for a moment.  The kids thought she had fallen asleep, kind of giggled. After seeing her head down, I took a look at her eyes and nope, not asleep, eyes were open but she was absent.  I just explained that “she’s ok, but this is a thing..”.  Took her inside and tipped her back in the chair with the handles on the second step of the stairs so her feet would be higher than her heart, until she came back to us.  Of course the kids were a bit horrified and probably wondered if she would die right there.  I knew better but the kids, not, ugh.  So, that was a lose/lose activity.  I apologized to mom, got her back home to her bed where she was much more comfortable.  I was able to get the generation pic back at her house while in her bed.  Learned a few more things that day which makes it not a total loss.  

So now I struggle since she’s “bed bound.”  She seems to sometimes express some type of complaint of doing nothing, of just sitting there.  But I know she doesn’t want to get up, not really.  I don’t know if I should try to get her up at all or not?  Not knowing how to engage her or what she wants is the hardest part for me right now.

So… there’s a 4th birthday party Sunday for one of her great grandchildren at a park.  I usually don’t have relief on Sundays so I actually thought maybe I could take her.   What in the h*** am I thinking.  Yeh, lets have a syncope episode at the park in front of itty bitties and the public.  geesh!

I think about some of you that have considered or actually traveled with your LO for festivities and I only went around the block.  Well another fail for our adventure.  At least I’m wiser again or maybe not so stubborn or selfish.   

May flowers

What a day! Bless your heart. I had a visit like that not too long ago but didn’t think about how the flurry of activity would affect my FIL. He was clearly distraught. Now when the grandkids come to visit, I take them to the pool while DH and his brother visit with their dad. I wish I had thought to get a picture of all of them with him, though. 

My older son (27) cannot deal with any of this at all - he wants to get away from the situation as fast as possible. My younger son (20) used to be like that, but now he is actually eldersitting for his grandpa during naps (as long as he’s not hollering) and earning some cash. He is starting to be able to handle the agitation  as well - I offer to step in and he says “no thanks, I have earbuds”. I would have thought the situation would have been flipped. Anyway, i think it is a hard thing for young people to see, even if briefly, that we are mortal. Maybe it will affect how they chose to live their lives or spend their time. Probably not, but one can dream, lol.

I hear you about bed bound vs. chair. At this point the only reason my FIL is in his chair is because he hates being in bed (if he’s not asleep), still spins constantly, and will not eat or drink in bed. His hospice nurse believes he will probably not be bed bound until he’s at the very end/stopped eating. 

M1

Sounds like you handled it pretty well m&m.  Hard to give up on wanting those family moments, for sure.

My daughter (the one with two young girls) has already brought up the holidays --of course it's natural for her to want to plan ahead.  This will be my first year with my partner in MC and I have no idea what to do, of course no idea right now whether she'll even tolerate my visits.  My daughter offered for me to spend Thanskgiving and/or Christmas with their (her husband's) extended family, but I just don't know how to handle a memory care holiday.  Or lack thereof.  I'm sure this will come up more as the year draws to a close.  Anyway,  I completely understand your wanting that family togetherness and the generational picture. 

My partner has a niece in Chicago who wants to come visit, but I've discouraged it so far.  All the way from Chicago for a 30-minute MC visit?  Doesn't seem worth it.  She's not at the point where we can take her out or even downstairs to the dining room for a meal.  Maybe by the holidays, that will prove a possibility.

Joydean

M&M I think you handled everything amazingly. So glad you got to see so many of your family and enjoyed part of it. The family picture will be priceless for you . You did a great thing for your family. 

mommyandme (m&m)

Thank you for your caring comments.  

M1, “I don’t know what to do?” is a staple for this ride.  I’m so very sorry that your partner has essentially faded from your life presently and for the anguish you deal with because of it.  I hope you will be kind to yourself during the holidays and have some peace with whatever you decide.  

May flowers, besides really appreciating your empathy, you reminded me that the young adults often feel awkward and just don’t know how to deal nor want to. It’s sad but true.  

Joydean, I wish I could cheer myself on as you did.  Thank you.  

The bed bound situation is depressing. I thought this morning if she wants to get up, even just to stand, we’ll do it by golly.  I asked her if she wanted to and she said emphatically “well, yes!” I apparently disregarded the communication gap and the opposite world answers so…FAIL! She never stood and just bent over as if to keep her butt on the bed.  In the end I had to maneuver her displaced body around on the bed and fix kitty korner chux.  Now I have to laugh. Maybe the camera video caught it and I can use it for a smile later on.  

Live and learn, live and learn. 

I hope your day is uneventful and peaceful. 

abc123

M&M, You do a great job of taking care of your mother. You have offered me kind words of support many times during my mom's journey. I appreciate you. Being a caregiver should come with a crystal ball at the very least. Nope. We get nothing. I am thankful for all of us here trying to find our way through the dark to care for those we love. We do have each other!

mommyandme (m&m)

abc123, thank you!  How are you these days having moved on to stage 8?  Really glad to still see you here. Hope your dad and fam are doing ok and supporting you too. Lord knows how you’ve been supporting them. I hope you are able to find peace and joy as you continue to move forward.  We are definitely not alone, thanks to this forum and wise and compassionate people like you.

​fesk

m&m, please be kind to yourself. I don't think there is any way you could know your mother would have a syncope episode. It sounds as if your mom did enjoy some of the day. 

We are all learning as we go. It's so difficult because every situation is unique - not to mention each day can be different. Very difficult to know what the right thing to do is under these circumstances. 

I know you are struggling with decisions on how to handle things since your mother may now be bed bound. Maybe try not to have the weight of permanent decisions but take each day and situation as it comes. Do what you feel is right in that moment. I am trying to learn to do this as the weight of these decisions and caregiving is too great at times.