Is it okay to simply vent on here from time to time?
I am writing because I took my mom out to the park yesterday. We drove a bit over an hour away and we had a bunch of picnic food packed that we took to a park we discovered a few months ago that we both really like.
My mom (currently lives in a nursing home) has urinary incontinence which has been an ongoing issue since prior to her 2022 stroke. Prior to the stroke she basically managed it herself as she had the physical ability to do so. However, I am learning now that she also has fecal incontinence. :( This breaks my heart. I am unsure of when it started but I believe it started as a result of the stroke... I think. Since she went into the nursing home a year ago, I have been taking her out on 'outings' once a week. Yesterday was the second time she had a bowel 'accident' that I have ever seen over the past year, and I always take her to the restroom multiple times on our visits. Although it seems to be infrequent, I do fully believe I can expect the fecal condition to get worse over time. I don't have an issue with changing pull-ups due to urinary accidents; they don't happen frequently anyway as long as she's taking her regular bathroom breaks. The fecal accidents however scare me a ton more though for obvious reasons. :(
The accident happened likely sometime while she was eating the meal we had out in the picnic table area. As it had been nearing 3 hours since we left her facility (that would have been the last time I took her to the restroom), I told her we need to take a bathroom break before going through the rest of the park. At first she said she didn't need to, but I always insist because right now I believe 2-3 hour restroom breaks are necessary for her. As soon as I pulled down her pants her booster pad was FULL. The bathroom was a really hot/stuffy place situated a bit on a hill, so I had to go down to the car and get wash cloths and stuff to clean her up via the sink.
All in all, it took about 40 minutes. :( I am SO so happy that absolutely none of it went outside of the pad! The pullup itself was also completely unaffected although of course I changed everything for her including that. She also had on WHITE pants that day because that was all she had that was clean (!). And nothing got on her pants. So in short, I had a LOT to be happy about. In addition, my mom agreed to remain in the park and enjoy the rest of the park visit for about another 2 hours after that, so I was happy she did not let the incident ruin the rest of the park visit, although I could tell her mood shifted for the rest of the day.
I want to end this by saying that when I dropped my mom off at her facility (like 9 pm last night), it was just honestly such a sad ending to the day. Despite me thinking she 'made it through' ok despite the accident, when we got back she started crying and expressing how she wants to die and how she has little hope she'll ever do things like walk in the park or ride a bike or even just be a productive person generally. She had thrown in the comment about the day being a bad day as well. Now of course, I spent over an hour trying to console her and it went 'ok', but I also was firm in letting her know that she needed to focus more on the positive as much as possible (as one example, she 'can' ride a bike again, the "double bike" kind where I'd do the majority pedaling).
On the caregiver end it is emotionally exhausting when these episodes happen. But I also want to be empathetic to my mom. It breaks my heart how certain conditions can change one's life permanently. I wish I could take away her pain; I am trying to remain a good listener while balancing that out with understanding there's only so much I can do. I just really honestly was a bit saddened that such a long and what I thought was a good day out (overall) ended on the note it did.
She needs to be LISTENED to about the profound losses she is having. The losses you cannot fix.
LISTEN to her, Psalms. Grieve with her.
You can't FIX this with a picnic.
It would be a disaster even with a helmet. She has not the balance for that. That would be VERY poor decision making.
And Psalms, when your Mom wants to tell you about her losses please just be quiet and listen to her.
PLEASE.
You aren't there to fix it and you SHOULD NOT DENY it.
There are losses for them. She has a right to grieve them. Just listen to her grief please, and tell her you are sorry, and if there was something you could do you would, and to let you know if you can do something.
I just wrote when someone said "What can we do for our elders" to LISTEN TO THEM.
Stop negating what they say.
Their lives are one loss after another.
Tell them you see that. You hear it. You acknowledge it and feel sad and helpless about it.
ALL THESE WOMEN have to tell their NURSE because their family won't listen.
They don't need a picnic! They need to be listened to.
When my mom was in her NH, that's what we did. I only found out who she was because I ran into her one day when I was visiting mom. Bizarrely, she was iny college class, although we'd never met.
Of note, I was talking about the type of bike that has more of a chair attached to it. She can't balance to use a true tandem type of bike; would definitely be unsafe.
Your post will have me thinking a lot about how much I'm helping vs hurting. I don't want to ever jeopardize her safety. I'm just realizing how much I myself am not accepting what cannot be done anymore. I had SO so many plans for my mom and I that I see just evaporating if she can't even leave the grounds of the place she lives ever again. Which is why I do what I do - I want to take advantage of her having time out while she still can because I fear that day will come where she absolutely can't but I admit I don't think that day is here 'yet' because she had 2 fecal accidents over the course of a 14-month period. What I do think however is that she can't be out for as long of a period; that makes sense. I will also talk to the nursing supervisor/social work about this at some point soon to see what they say about all of this.
I have heard so many good things about Wellbutrin. Excellent point that it's not going to take away all of the sadness over her condition. It really is the drug I'd want her to try if she ever gets on antidepressants.
Thank you for sharing your thoughts with me.
Bring the picnic to mom next time. Spread a checkered tablecloth outside on a picnic table at the SNF and enjoy your meal there. We took the celebrations to mom in her Memory Care ALF all the time, like pizza parties and holidays, bc she was simply too anxiety ridden and weak to handle outings, much as she'd tell you she LOVED THEM. We have to meet them where they're at now, not where they want to be or perceive themselves to be.
Wellbutrin max dose did help my mom a lot with her depression, but she was still sad over her condition. The whole situation is sad and not something anyone can fix, with or without pills, imo. Yes, antidepressants can help, but when we see ourselves in decline, it feels awful. Anything we loved ones can do to NOT underline that decline is most helpful.
I'm sorry things turned out this way for all of your wonderful efforts. Wishing you the best of luck moving forward.
I guess she doesn’t though since she is so sad about it all. I’m trying to think of anything that might be helpful to you.
What I can do is push her to seeing a professional that over time 'may' be able to break that barrier. Otherwise, if there is no way for me to force her to take some sort of antidepressant then there won't anything else I can think of that I can do to help her.
After the accident that day I felt a bit sad not getting a 'thank you' after all of the cleanup. But then I had to put myself in her shoes and just looking at her sitting there slumped over and completely soiled makes my heart break into a million pieces. Yes it can be exhausting getting everything purchased/ready and picking her up and driving everywhere and doing the wheelchair pushing piece of things all day but none of the things involved with me taking her out to the park for a day have got anything on the 'daily' struggles she has to go through losing her mobility. In short, she's the admirable one here having to deal with everything she deals with now and still have the will to get out of the bed - I don't know if I would if I were in her shoes.
I will say that I took her to a portion of the park and gave her bread to feed the ducks, at which point a lady walked up to me and said "I love you." I was quite taken aback. I guess she had been watching us. She whispered several times "I love you." And said, "That...this...this right here...this is what is love. What you do is what is true, unconditional love." Again, I was a bit taken aback but I thanked her and my disappointment about not getting a thank you earlier from my mom immediately went away.
We frequently have unexpected moments like these during our outings now and when they happen they really are touching.
My son had resistant depression so he finally was able to get a genetic test to see what is best for him for meds, and it turns out none of the SSRIs would work for him so the psych put him on L-methyl folate which is a supplement and is a precursor to your body making the brain chemicals. He is doing so much better just on this supplement.
This vitamin/supplement patch has L-methyl folate in it (I think others might too but this is the one I found).
I totally understand all that you were saying; I know that you did not mean to criticize.
Definitely getting her to a therapist that could convince her to try the ADs is key. I am not sure how to do that. I have been asking for the psychiatrist's contact info from the nursing facility and they said they can't give it to me. It's the strangest thing - they wouldn't even give me the psychiatrist's name. I really really dread dealing with my mom's nursing home staff a lot (not all, but a lot) of the time.
My mother was also against AD meds; when she had a major stroke, the rehab psychiatrist told me that they were part of the protocol for stroke recovery. I agreed (as mom's HCP) and she did very well on them.
By the time she knew she was taking them, they'd started to work and my mom was self-aware enough to see that they were making her feel better
Up until now, it's worked out well as long as we take 1-2 restroom breaks while out but yesterday's incident is really making me rethink things.
If she was on any form of psychotropic meds in the 70s or 80s, what's around today is a whole different ball game
There is even genetic testing which can pretty reliably determine what AD meds will and won't work.
It does really suck for her. It sucks for me to because I will never have the perfect words to say to her and that is very hard for me to say.
It sucks I'm sure, but you now have to do what is best for all involved, and yes that includes you.
It sounds like you've done a great job so far and I'm sure you'll continue to do so, it may just have to look a little different now than it has in the past. You'll figure it out.
Wishing you and your mom the very best.
If weepiness is an "often" occurrence, consider having her seen by a psychiatrist for an evaluation for depression, which happen frequently post-stroke.
I think you are going to need to cut down on how long your days out are. I think 6 hours is a long day. You did not get her back till 9 pm thats probably bedtime for her. She was probably exhausted and that brought on the crying. Poor lady.