New here and grateful for finding you all

darcytg

I am caring for my LO in her home, unexpectedly, since late October. I live half a country away. My LO will be moving to MC within the next month or so. I've been learning lots and am grateful to be able to be with her on this troubling vulnerable journey.
We are both scared. I am falling apart and my LO doesn't recognize the depths of her care needs.
The 2 other people in support of her (POA and dear friend) are in their own stages of learning and support.
This is so hard and I try to be respectful in supporting her diginity and autonomy.
The dentist has mde it clear that oral care is crucial to prevent further decline and pain. I try to do our end of day oral care together, sometimes it works, sometimes it doesn't and sometimes I just let it slide because getting upset (both of us) before bedtime just makes my LO anxious and keeps her up.
Routine is our friend nd the other people in her life don't get it.
Grateful to walk this path with my LO. Don't know how I'll be able to get on a plane home once she moves.
I'm over exhausted and over emotional and not the best care giver in this state of being.
Any tips on supporting the transition to move?
Thanks for being here.

Jgirl57

Welcome! I don’t have any MC transition tips, but I wanted to give you a virtual hug for caring for your loved one . You are doing everything you need to and have a plan. Excellent so far!! You are emotionally involved so it will definitely be hard to fly back home after the move. Hugs to you !

darcytg

Thank you for seeing us. I'm struggling and scared.

darcytg

forbarbara

I am sorry you are on this journey but glad you found us. Welcome. You’ll find a world of support in this forum as we support, console, inspire and even giggle a bit.

Does your LO have a primary care doctor with expertise on this disease? If so they can advise you on sorting through what care is critical and what isn’t. Also on what stage she’s in. There are excellent resources here on the different stages. (I didn’t know about any of this until after I got my MIL into MC so I know firsthand about unhelpful doctors!)

The MC is likely to ask you not to visit for a week or 2 while she gets acclimated. You should be able to talk to staff during this period if you find you’re stressing out about how she’s doing. But t I hope you’ll invest in self care while you have that time. We have all learned that taking care of ourselves is just as important as taking care of our LO.

There’s another discussion here on communicating with MC staff that may be helpful. And you probably should anticipate trips to the hospital if she falls or becomes ill - will you need to fly in or can the others handle that? It took me a few hospital visits with my LO to realize they usually aren’t serious for her (thank goodness). She still needs me there but I no longer panic when MC calls about a hospital trip.

There's so much to process! Good luck and definitely keep us posted.

M1

Hi and welcome. My partner has been in MC for 20 months, a year in one facility and now 8 months at a second (better). Sounds like a lot of your contact after the move will have to be by telephone/video? You do need a plan for the person close (her poa?), who may have to handle crises. See if you can identify a staff member to be your primary contact. Make sure you're clear on what the facility will provide vs. what you have to provide (at our first facility, they expected me to provide all toiletries including toilet paper, which was surprise that was not well communicated). Likewise be clear about what additional services are offered (hair care, podiatry, in-house physician or nurse practitioner?). You may want to ask for a care plan conference (could be done by telephone or video) to happen on a regular basis, like every three or six months. Be clear about whether she has a DNR order or not, and what situations in which you would want her sent to the hospital (again, involve the poa on that one).

I'm sure there's more and will be a learning curve. But you'll all survive it. Keep us posted how it goes.

SusanB-dil

Agree with what's been posted. Also adding: does your LO realize what all is happening? For the most part, MC is not the thing LO has in mind. Fiblets are the best. If you need to, you can say 'Your doc wants you here 'for a while' for observation' ... or something similar sometimes works. Sometimes, once in MC, you can say LO is there due to a repair on their house, such as broken pipe...

And do keep in mind that you are doing this for their comfort and safety, and that you will still keep an eye on things. We go back to being a LO, rather than a frazzled caregiver.

My mom is actually more pleasant to me now than before. Go figure. MIL is not placed... yet.

darcytg

So grateful for all your kindneases and words.

Please say more about not visiting in the first 2 weeks. Some reading I've done elsewhere indicated that visiting often and staying as long as we wanted for the first 2 weeks would help my LO transition. I won't be able to remain nearby much more than a week once she moves and really am unwilling to not hold her hand for that time.

My LO is hyperaware some days and not as much on others of the move coming up.

From the reading on stages found here, my LO is solidly in stage 4 and foot in the door on many stage 5 items.

I am continually surprised at the quickness of changes throughout the day. We've had many good days in a row where her short term memory is kind of there. Hard to recall on those days what's actually going on for her. Maybe the donepezil is kicking in? The neurology diagnosis is AD and she has 4 brothers, 2 have passed, all diagnosed with different dementia umbrella diagnosis. The other days are miuch harfer and the tears in her eyes, and mine, break my heart.

We're both scared. She keeps wanting to move home to Canada.

So grateful to be here with all of you.

My LO is heading out tonight with her friend who doesn't understand where she's really at for a large family gathering at the friend's brother's house. I know my LO desperately wants to be with her friend and festive celebrating....I hope it goes well for them tonight. My LO cues heavily off me and won't have me to scaffold tonight.

I hope it doesn't wipe her out..

And it is very likely to.

Best of everything to each of you new friends. Enjoy the moments of laughter, grace and holding hands.

forbarbara

About the first few weeks in MC - the facility may request that you keep your distance for a short while. But if they don’t, then absolutely do what feels right for you.

It might help to remember that at some point your LO will lose her sense of time. So while it may be killing you to be away for weeks, it may seem to her that she just saw you yesterday. Also I wonder if the MC would help her FaceTime with you. That might be a comfort for both of you.

stay strong.

darcytg

Thanks again for sharing ideas and experiences.

My LO is often in the space of only NOW making sense. Makes navigating upcoming visiting grandchildren, dr appts and pretty much anything a hit and miss experience for me.

Sleep disturbed night for me last night. Always trying to put on the smile and make it reach my eyes. Harder when I'm overtired. Not to mention more dangerous in the late afternoon and evening, my LO's hardest time of day and I become a zombie by then ... when I most need to be alert.

Hoping to make a family cookie recipe today.

Enjoy the moments and nature.