Does It Matter?

jbreunig33

My mom has been living at a Memory Care Facility for a little over a year (but has had dementia for approximately 8 years) and while she still knows people that have been in her life for a long time, she essentially has no short term memory and is "stuck" where she was about 8 years ago (living in the same house, my dad still being alive, my kids the same age as they were). When I go to visit, she will keep asking me the same 3 or 4 questions over and over - no matter if I take her for a walk, look at pictures, try to do a puzzle with her or anything else to "distract her". I absolutely know this is how it will be every time and am trying so hard not to get frustrated, but also go less than I want to/think I should because it's so hard. Another example is when I take her to one of my son's sporting events, on the way home, she'll ask how he's doing and that she misses him and when will I take her to one of his games.

My main question is - since she doesn't remember, does it still "matter"?? Meaning deep down, can she still "feel"/"know" whether I'm visiting her once per week or every day - for example? Some times I think it doesn't matter and I shouldn't keep beating myself up for not visiting her more. Then other times I wonder - what if lots of visits and hugs and love actually make her feel better/do better overall….even if she'd never be able to say that? I would do ANYTHING if I knew it makes a difference for her…but if not, I need to find a way to not carry all the extra worry and stress on myself.

sandwichone123

Different people feel differently about this. I tend to visit less, and I think visiting folks is something we do more for us than for them. That said, I still do visit my spouse for an hour once a week. I stopped taking him out of the facility, though, when he was no longer able to behave appropriately.

Quilting brings calm

I don’t think it matters other than if they enjoy seeing you when they do see you. Because if they can’t remember seeing you five minutes after you leave…. Then it doesn’t matter if it’s been a week since you last visited. So just try to make what visits there are enjoyable. I say that- but visits with my parents were not enjoyable. So I didn’t practice what I preach.

SDianeL

I don’t think it matters to them. It matters to us. Although I went at meal time, usually lunch when my DH was in a better mood. The facility had ice cream handy as a distraction which also helped. He asked the same questions every time. I answered them every time. The question you must answer is whether you will feel guilty for not going and-or regret not going after she passes. A therapist might help you deal with the stress of going. I know how you feel. Every time I went I didn’t want to but I went anyway. I would take a break either way. Hugs. 💜

MN Chickadee

The visits were threefold for me. Number one (and mostly) they were for me. I just wouldn't be ok with the end coming and knowing I didn't spend some time with her, even if the time was so difficult and repetitive. We still did have some moments of joy and connection occasionally and I cherish those now. Though they were fleeting and quick they stand out in my memory like you wouldn't believe now that she is gone. Number 2 the visits were to ensure she was getting good care. Observing her room and appearance and also connecting with the staff, forming relationships with them and asking about mom. Staff notice which residents have family around and will perhaps be more likely to go the extra mile. And number three it was for her. Because she deserved connection and respect despite her illness. I know she would have done anything for me. It's like a lesson in some Buddhist principal or something. You are truly living in the moment with the person, it will be erased in an hour but perhaps that doesn't matter. The moment still existed between you. You know that saying (unrelated to dementia) that people won't remember what you said but they remember how you made them feel? I saw that play out with dementia. She couldn't remember anything, sometimes didn't know who I was even, but she still seemed to have some sense of how I made her feel and that I was safe and caring when I walked in the room. That was about the only thing I could give her.

All that said, the regularity for visits depends a lot on circumstances. Some people's loved ones behavior are extraordinarily difficult or they had difficult relationships before dementia and it isn't good for their mental health to visit much. Some people have demanding loads outside of caregiving and their jobs and kids and their own health needs to take the front seat. However often you visit is ok, try not to feel guilt. The visits are hard when they can't hold a normal conversation. We do our best, that's all we can do. I found her favorite music made a difference, both in her mood and to fill the void in the experience. We also joined a choir designed for people with dementia. That made one outing per week where we had something to do, made for a nice visit without having to go through the same questions a million times because there was an activity to do.

forbarbara

agree with the comments - especially the value of having the facility know you show up. They tend to share more info with you too.
I didn’t have a set day or time but would just pop in. Sometimes I’d stay an hour, sometimes only 10 minutes. It just depended on her mood. I confess there were times we’d just sit and watch Hallmark movies together in the community room. I enjoyed being with her and think she did too.
Find the balance that works for you.

harshedbuzz

Perhaps it would be easier if you adjust your expectations and reframe what a successful visit looks like.

Your mom has an organic brain disease that has her stuck in 2018. She can't change that. You can't change that, but you can adapt and join her there. Instead of taking her out, maybe you could accompany her to an activity or meal at the facility or bring her a treat to share. When she brings up your son or husband, you could use that as a segue to reminisce about them with her.

I personally found visits difficult, too, so I visited a little more often but only stayed 30-60 minutes. I almost always brought a fast-food lunch, ice cream treat, or soft pretzel with her enjoyed and killed some time.

I agree with the others that being known to staff is important. In the event they're short staffed for some reason, your mom's care will be prioritized since they know you'll notice.

HB

Arrowhead

My wife is in stage 7. I'm retired and live just 3 miles away, so I go for an hour every day. She responds to me but like most of us, I don't know how much difference it makes to her if I'm there or not. I go just in case it does.

ARIL

I agree with the observations about the visits’ importance for the visitor and creating connection with the staff.

Does it “matter” to my dad that we went out for ice cream when he forgot it by the time we drove out of the parking lot? If mattering means making memories, then no. If mattering is about the fact that he had some fleeting moments of happiness, then yes. So because I got to witness and share the happiness, it mattered to me. Yesterday (when this example happened!) that was enough.

But how often you “should” visit depends on all sorts of things, and there’s no rule to apply. I am visiting a lot right now, but I check in with my own feelings/attitudes before I go, because when I have a bad attitude the visit is doomed from the outset. For instance, sometimes I can just roll with all the repetition; other days, if I am stressed already, that can send me right around the bend.

We are all doing the best we can, and it’s hard to come to terms with the fact that no matter what we do, this disease only gets worse. We can’t make that different. I have to hope that the memories I am making now (for me) will help me when his condition gets even harder.

GothicGremlin

I agree with everything everyone has said.

My younger sister had early-onset Alzheimer's and FTD. I'd either visit in person or I'd call her on the phone - until the phone became too much of a stresser for her.

I visited often for a few reasons — 1. for myself, 2. for her, because she always recognized me, even near the end, and 3. even though she wouldn't necessarily remember that I had visited, she knew I was there in the moment, and she enjoyed that. We would often listen to her favorite music, and that was always good.

I'll add a couple of things though — I had always had a good relationship with her, so there wasn't anything unpleasant in that regard. But if visiting causes you stress, think about what frequency you can manage. And please don't feel guilty (easier said than done, I know).

Ms Meg

I posted a question very similar to yours, about guilt, and about feeling like I am grieving my Dad who is still alive. The more I read these posts, the more I see the commonality of our experiences. I read some and think- yes, that's how I was feeling a year ago. Some comments are similar to my current feelings and there are some that maybe foreshadowing what is to come. I've learned some really important things with the help from others here, and by reaching within myself. It brings me peace knowing I can make some sense of it all.

• yes, it does matter if I am there visiting him, even when he is not sure who I am or if he forgets it all within an hour. He knows in that moment that he isn't alone. That's important.
• there is no concept of time, so if I visit infrequently, it still counts; whether I stay 10 minutes or an hour, it counts the same. I do the best I can, and what I am doing is enough.
• Every visit is a moment in time for my Dad- as his time for making memories has passed, but I can still make memories for myself.

I hope this help you. I think as they change, we change how we feel about it all, too, and the emotions really run the gambit! It's a cruel disease and shows no mercy- so you have to give some mercy and grace to yourself.

jbreunig33

Thanks everyone! I really really appreciate you taking the time to respond!