Finding balance while managing guilt.

Marie C.

My mom is heavily dependent on me. Even though my mother is living in a AL, she expects and asks to see me everyday. I try to see her as much as I can as I know seeing me comforts her but I am having trouble balancing everything. In addition to caring for her, I also am trying to maintain my own household, care for my family at home, run my business and keep up my treasured friendships. Sometimes it just seems that I have too many balls to juggle. I wish there were days that she could entertain herself and take advantage of the activities at her AL but her default is to call me and say "what are we going to do today" or "when are you coming to see me?" How do I answer her? I feel guilty about not going to see her when she asks for me. I admit, I am a people pleaser so I try to make everyone happy but I feel like I am spread very thin. How do you find a healthy balance and deal with the guilt of saying "no" to Mom? I have tried telling her on some days that I just can't make it over for a visit today but that usually just results in receiving multiple phone calls all afternoon asking for me to come over again and again.... and the guilt continues. I always feel like I am letting her down but sometimes I just can't do it all. Yesterday, I spent a large part of the day with her. I took her out to have her hair cut and nails done. We had a nice time at the salon and then I took her to lunch and to do some grocery shopping before returning her to her apartment. Last night, she called and asked me to come visit her today. She wanted "to spend some time with me cause she misses me". I told her we had such a fun day at the spa. She did not remember any of it. it was heartbreaking! and Any advice?

harshedbuzz

@Marie C.

Hi and welcome. I am sorry for your reason to be here but glad you found this place.

This isn't an uncommon situation for those of us who are dementia caregivers. Dementia impacts more than just memory; it also impacts things like empathy and the ability to execute and initiate a plan to entertain oneself. Your mom no longer has the skill set to keep herself busy nor is she able to care what impact she is having on you and your life.

One thing that could be exacerbating your situation is whether AL is the right setting for her at this point. If this is a hospitality-model AL and she's progressed to a degree that you spent an entire day with her and she can't recall it, she would be better suited to a MCF. We tend to look at our LOs with rose-tinted goggles oblivious to the scaffolding we provide intuitively to help them function when with us. There's an old saw here that by the time a family is willing to consider AL, that cruise has already sailed.

The activities at her AL are very likely beyond her now. The other elders living there will not want to interact with a person impaired enough to be confused about her husband being dead or thinking she's living "at school". They can be quite nasty; my aunt was picked on by a pack of gray-haired meangirls at her AL when she belonged in MC. If your mom messes up at bingo or cards because she's confused, the others will likely accuse her of cheating. If she repeats a question or refers to the facility as school, they will avoid her at best.

If you're not ready to move her to MC or this is already a high-acuity AL for MC, then it could help to hire a companion to visit her a couple of days to engage and occupy her so you feel less badly about taking care of your other responsibilities.

Many people who get multiple calls from their PWD, disappear their phone. If there's an emergency, the AL/MCF will contact you. Other folks who aren't ready for that step don't take calls but let them go to voicemail to be answered at a time when they're up for it. A few will even get a burner phone for receiving these calls and leave a loving and reassuring outgoing message to calm their LO.

HB

SusanB-dil

Hi Marie - HB is totally correct. Just want to throw in there that fiblets are our friends. Besides letting your phone go to voicemail, you could also try telling her 'you'll be there in a little while', and repeat as necessary. or that you 'were just there a little while ago (a little while could be yesterday), and will see her again tomorrow'.

One of the rules in caring for someone - you must take care of yourself. If you continue on this trajectory, you will burn out way too fast. It is not sustainable.

catminor

I struggle with this too. You are not alone. I've been letting my LO calls go to voice-mail more often. It helps tremendously. I call her back when I actually have time, and that's given me some space to carve out a little more time for myself, even if it's just to enjoy a salt bath and decompress a little.

I agree with others here- gotta take care of yourself first or you'll burn out fast.

psg712

Agree with all of the above. My mom no longer has a phone because she doesn't understand how to operate one, even to pick up an incoming call. But I understand the heartbreak when you've actually had a nice time together, and she doesn't remember it the next day. She sees me and reacts as if its been a looong time since I've been there, even if it was just a day or two ago. At least she is happy to see me!

I'm trying to live in the present moment when I'm with her ... and when I'm elsewhere, working, caring for my family, taking a moment to relax. It really is a hard balance, but we have to find it. This is a marathon. Blessings to you in your run!

Anonymousjpl123

This is heartbreaking to read because I so understand where you are. You want to take care of mom, make sure she has what she needs, gets the right stimulation, and feels safe. If it is just you, you are correct - that will eventually become too much.

I hoped and prayed that my mom would find what she needed in AL. And in many ways she did, for the 9 months she was there.She made a few friends and attended meals. But in our case, her dependence on me was a sign of much deeper issues.

Here’s a question: do you think her needs could be met by others where she is? Do you think she could really build a safety net there? I agree with others: the questions she is asking seem like she may wind up needing a higher level of care sooner than you wish. I was in your shoes: acting as the only scaffolding for someone in AL is a double-edged sword: you have all the guilt that they’re not at home, but still have to provide the level time, energy, and care they actually need so you don’t get a break.

Can you afford MC? It may be worth seeing if there are some in your price range. My moms has suites that still have private rooms but keep costs down, as well as single apts. My point is that even if she needs it now, from her questions, at some point, she will need more than AL can provide.

The one exception: there seem to be some people who, despite memory loss, don’t try to escape and can fall into a routine where they are still safe, even though they have little sense of time or place. But they seem few and far between.

Im so sorry you’re going through this. I do hope it gets easier. I wish I had better ideas to share.

Marie C.

Thank you for all the support and guidance.