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.
What a thoughtful and insightful post. I do indeed intend to 'keep forging on', however adapting as I see fit and so as to ensure the proper balance such that my mom's well-being and safety is prioritized. Really enjoyed reading your post.
Sorry no brain power today to read all 27 earlier replies..
But I just wanted to say what a caring & wonderul post.
Life is full of nice & not so nice moments isn't it? Accidents (ie fecael incont) have to be among the not.
With some planning & flexability I think you can still enjoy your days out with Mom.
Some of things I did when 'accidents' became the norm are;
- bring a supply bag (spare trousers, pullups, wipes, towel, gloves, disposal bags)
- add car seat protection
- know where disabled facilities were
- regular opportunites for toileting
If being more discreet is important, hide the supply bag in the car & hide the car seat pads under regular (washable) car seat covers.
Have a plan for accidents. Small can be managed when out. Larger - tie a big sweater around the waist, add towel/plastic bag on the car seat & return home.
Stroke survivers can really struggle with mental fatigue.
Planning for outings to be time limited, maybe earlier in the day (lunch out instead of dinner). Be aware emotional overload can happen at the end of the day. Don't dwell on this - this is time to be in their familiar room.
You are doing a fantastic job! Make sure you tell yourself this!!
No-one is perfect - don't worry if not every outing is a sucess.
Keep adapting as you need.
Just last week I talked to someone who was so very sad their parent could not go to their favourite holiday destination anymore.
But they intended to keep adapting.. when going out to a fav restaurant wouldn't work - having fav food brought in & eat at a nice area in the NH. When going out to a park wouldn't work - finding a nice window with a different view.
In other words, finding what was still possible.
All the best.
Your love for your mom is so evident.
I’m so sorry that all of this stuff is happening with your mom.
Thanks for sharing your journey with us!
Please don't be mad at me that I laughed so hard at your story!
So I want to share with you what I texted my mom yesterday. Out of a very long text, one thing I stated to her is that both of us might have to start employing an approach where we joke about some of this stuff because how else will we get through it such that we can both move on quickly and easily and also keep from being depressed, etc. about accidents happening? I'm starting to think that humor might be the piece we're missing and that we might have to both just find 'inside joke phrases' we say when things happen or something. Your example of 'ish happens' was exactly the kind of thing I was thinking.
May sound wild and crazy to others but for those in similar situations it may not sound so outlandish. I for one know that I can't keep going on with things being as 'consistently serious' as they currently are; one must have a break from all of the gravity of the situation and laugh to keep from crying at times.
I honestly don't know how you took away from my original post that I wanted to emphasize my bad day, criticize her and have no sympathy. But perhaps it came off that way to others as well; I really don't know. I understand that not everything I write will be interpreted as I mean it by all. Especially when I'm trying to capture the essence of something that cannot completely be captured in one forum post.
I get it. My mom can't ride a regular bike anymore. But when she's crying about it, yes I listen. But sometimes in addition to listening I tell her a 'close alternative' that is still achievable for something she is lamenting over. And guess what? She stops crying. Why? Because I've listened to her enough to know that what she wants is hope in that moment...hope that she can ride with me somewhere once again and for now, it is true that she can still indeed do so...even if it won't be in the same way. So I respond in a way, if necessary, to redirect her negative thoughts towards hope for something positive. Now with all of that said, I have no clue if we'll ever even really set foot on a 'bike with a chair'...ever...that isn't really the point actually. The point is that I say something that is truthful that gives her hope whenever I can.
"Sometimes the darkness just cannot be light for our elders. Your poor mom just shat herself at the picnic. There. She disappointed you again." <--If you're saying this is how my mom felt, fair enough. I was originally thinking you were saying that is how I felt. Of course, I was not disappointed in her having an accident. But rather that the day did not end well for her because of it.
I get it. Everyone is different. Literally everyone has their own communication style and their own 'ways'. There is something to be appreciated about the differences amongst every one of us individuals. With that said, the act alone of your continued use of the caps function in your response is not lost on me. I will just say that there is no shame in not only acknowledging when one's approach is offensive, but in actually genuinely changing one's approach so as to not continue to subsequently intentionally offend.
With all of that said, I accept your apology.
I'm sorry you both had a dark spot in an otherwise lovely day!
I applaud your ability to clean it up; I would never be able to do that, personally!
My Mom has had diarrhea/fecal incontinence aka "accidents" since her first battle with cancer in 1981. We don't get along now, but 20 years ago we used to do things together. One time we went to red lobster, had a great meal, then on the way home she literally jumped out of my truck, pulled up her winter coat, sat in a snowbank and $h@t in her pants. "Why didn't you pull down your pants?!?" "I didn't want anyone to see me!" "They knew what you were doing, you told them!" In short, we learned to laugh about it.
Strokes can be very debilitating, and I hope and pray that your mom is able to find joy in what she *can* do still! And maybe develop a bit of a $hit happens attitude.
Please mention this emotional episode to her Dr, too, as depression can be caused by stroke (directly or indirectly).
The Forum is like a box of chocolates.
You never know what you're gonna get!
I meant to add light here, to the darkness.
I not only poured out MY (caps) frustration on you but YEARS (caps) of it; a career listening to people whose families would not. Yes. It sends me screaming still. I apologize. Sorry.
I may have been wrong, here, but I got you suggested to your mom she could ride on a tandem (to me, a bike built for two) that you would control. To me that reads disaster and injury to you both, because even a toddler can throw off a seasoned cyclist.
As to any kind of bike? Likely not the one mom is mourning, imho.
And when you say you hear her speaking about her woes and try to change what she was talks about to ideas more "bright in the darkness"? For me it sounded more like you were complaining about her mourning, not attempting to lighten her load.
Sometimes the darkness just cannot be light for our elders. Your poor mom just shat herself at the picnic. There. She disappointed you again. And she humiliated herself. Not a whole lot to cheer about I think, despite your best efforts.
It may be only MY take, but your mom's day was no better than yours. Instead of sympathy for both yourself AND her, it seems to me that you want to criticize her and emphasize your bad day, leaving her humilation and pain unheard.
If mom just wanted to be heard, perhaps that's true for you as well.
I hear you both.
This isn't the first time I have heard you.
Next time I will do you the honor to scroll by, leaving your vent for the kinder members. It will be better for us both.
@Need, thanks. I recognize, however, I came off too strong with Psalms. As I once wrote you, privately, Need, YOU (caps--shouting) are what I would like to be when I grow up.
YOU are always kind, no matter what the situation is.
I am that other chocolate in the box. The one that tastes like hard brown sugar gone bad. Those who love See's candy will know the one.
I will certainly ask for my mom to be seen by the psychiatrist. My mom has spoken with them before but does not indicate much regarding the discussions. I know they have recommended meds to her because facility staff has asked me why she refuses to have taken the recommended ADs by the psychiatrist in the past. I know she likely hasn't seen her in some time.
Thank you. Based on your username alone, sending big (((hugs))) your way as well.
Thank you for the complements.
That was a beautiful story; I certainly am holding back tears reading and re-reading what you wrote...sigh.
For what it's worth, I don't know if this will make any sense but I'm not as anxious about trying to do what we used to because we don't do things as we used to. We used to travel to Miami all the time is what we used to do. Rather, I feel a bit compelled to make sure "I'm still doing the things that she can while she still can, even if she can't do every thing we used to do." Because I fear that one day maybe leaving the room of her nursing home won't even be an option at some point down the line. I hope that doesn't happen but I'm also not totally naive regarding aging under her conditions.
The comments about shortening the trips out make sense. Even those spark just a tad bit of anxiety that this is how things start 'going downhill' in terms of not being able to do a lot of things together anymore. I guess at the end of the day I will of course find ways to appreciate that I can simply see and talk to my mom no matter what happens. I do acknowledge the importance of that simple truth to both myself and to her all of the time. There are people in her nursing home that cannot speak so I get the need to focus on what we still have despite that things are clearly changing in ways we are both having trouble adjusting to. The staff is very supportive of our long outings so I think that I need to have some more discussions with them about certain things that are happening.
You are so so so right about her perhaps not saying anything to me because she didn't want to ruin my time out. Quite likely that was the case. Another poster mentioned that their LO is way more upset by their accidents then they are as a caregiver. I am the same way. I enjoy that I get a much needed workout when I take her out; it's like killing 2 birds with one stone for me. Yeah, an accident can be a bit stinky and time consuming, but I'd already packed for one to happen meaning I am already anticipating them so to me they're not a big deal. As I mentioned I was really really thankful the incident didn't require a clothing change (and that I had cleaning supplies with me and that also there was a bathroom on site to do it in). However, for her, she likely spent the rest of the entire day and night ruminating over how disability among many other things. I cannot imagine how hard it was on her.
My mom is only 64. I am 44. It's hard. At both of our ages it is simply going to take a bit of time for us to get to that mental point of "giving up" you speak of. I believe we are in that process. But that it is happening very slowly in ways that people who are not us do not know.
I understand how emotionally exhausting this is for you. It will continue to be that way. But as our LOs change, so we must change. We have to let go of what we hoped would happen, and it has to be more than lip service. We really have to give up our expectations and dreams.
That's where you are now. Of course, mom loves the outings and you do too. Now the outings need to be curtailed so you can lessen the burden on yourself. And also on mom. She may have been devastated by her inability to control her bowels at the park. She must have felt it - but it's possible that she didn't want to ruin YOUR good time. So, like a child, she simply said nothing and couldn't see through to the result that would eventually happen.
By easing the burden on yourself, you'd also be easing the burden on your mom.
Future outings should be on the grounds of her home. It doesn't have to be discussed why you've decided that. Just say you think it would be fun to go to the pond today and eat there, or whatever there is.
My mother loved to go out, and as her condition worsened, we couldn't do that as easily. She had never liked to just sit around and visit. One day I went to her assisted living when she wasn't up to going anywhere, and she apologized profusely. Secretly I was glad we were staying in because hefting her wheelchair in and out of the car and getting her in and out of it weren't fun for me. That day we got out all her knitting yarn and rolled it into smaller balls for some reason. I took some home with me to use in my decor. I still have them because they remind me of one of the best visits I ever had with my mother - no waiters, no hurry, no trouble. Just mom and me.
Embrace the difference in your mom, and realize that you don't have to keep up the fiction that things are the way they used to be.
I took a back pack. In the back pack were:
Gloves
Wipes
wash cloths
hand sanitizer (and this was pre-COVID)
a few bottles of water
Several packs of "Thick-It" (powder that thickens liquids)
snacks
several briefs (we used the tab type) (aka "diaper")
a change of clothes including socks
a garbage bag
At some point, if this becomes more frequent and you are not comfortable dealing with this, the outings out stop and the "outing" becomes a walk around the grounds or to another part of the building and a quiet place to sit and have lunch.
Apparently incontinence is not always a given, so have you talked to her docs directly?
It could be related to the stroke or nerve damage.
It could be related to meds. Have you asked the facility what, how much and when they are giving her stool softeners, constipation medications, &c? It might be that she didn’t feel it because it is a sneaky poo. My mom’s system is time sensitive, so you might try timing how long after the meds are given that the BM hits and then go out afterwards. The facility should also be logging urine and BM time and amount so that might help too. They may not like you looking at this log though if they aren’t doing it often enough!
Also my mom can’t take Zoloft (SSRI) because it causes explosive colitis so it could also be that your mom is having medication reactions, although this was VERY noticeable. I think there are other meds that may cause similar issues.
It could also be related to fecal impaction, even with daily BMs, which we discovered can cause soft incontinent BMs around the impaction.
It could also be a fistula, which is a hole between body parts and things leak. These are fairly common and often repairable.
Re the depression, depending on what happened in her earlier life, she might be better off with someone outside the facility. There are a number of therapeutic interventions I think the fancy words are that aren’t psychotropic driven. For PTSD hyper vigilance and related nightmares, we’ve had good luck with Prazosin, which is a short-acting blood pressure med the VA uses. I understand EMDR is also helpful in the right situations. Different talk therapies can work better in different situations.
Finally re the sleeping, I’d share that with the docs as well. Quality sleep is a big driver of mental, physical and cognitive health. The specialty neurologist Mom is assigned to gets very wound up about ensuring good sleep. Maybe Mom can be moved or if everyone is otherwise happy, they could adjust lighting (smart bulb, dimmer, whatever) to avoid that horrendous light on every two hours that says WAKE UP, MURGATROYD, WAKE UP!!
Oh and one more about the bathroom incidents, I’ve found my mum is way more upset about them than I. I don’t even notice anything 2 inches past what I’m cleaning and just zone out. She, however, is of course hyper-aware, mortified and sad. I don’t say “it’s ok” or “you are ok” because it and she are clearly not and she’s aware; I do tell her I am ok.
From my external perspective whatever it’s worth, you seem like you are doing a great job. Perhaps future-you can tell now-you just how good you are doing in these tough times when someone you love and you are hurting.
I think everyone wants to understand. I don’t believe that anyone is assuming things intentionally.
We don’t know your mom like you do. Sometimes, it’s hard to know what to say without knowing all of the circumstances.
I certainly wish you all the best. It’s really hard to watch a parent decline throughout their later years.
My mom had Parkinson’s disease and her quality of life changed drastically towards the end of her life. She died at 95 years old.
Yes, she is indeed like your dad. Similar to you I have given up on trying to get her to take certain meds.
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I listen to her all of the time. But I have to have boundaries too. I am the only one she talks to about these things. So if an hour and a half passes of her saying she wants to die and how she didn't choose to be in the nursing home and it's 10 pm, let's be real here. I can't listen to it for another 1 and a half hours like I may do on other occasions which means I do have to tactfully end the conversation at some point because I do not have a mother that will stop once she starts down this path. Trust me I know; I'm her daughter and I've sat with her for crying bouts when I was 15 and she described how she's never been happy. Anyone whose been through this level of depression with a parent knows it impacts your own health having to listen to an extent. And that is coming from myself as someone who also has depression. With all of that said, I have never ever denied her the right to feel the way she feels; please don't make claims about me that are untrue. I have never told her not to feel a certain way - that would be denying her feelings. I have already explained that what I do tell her is that she will need to balance out the negative emotions with gratitude for what she still has. And I stand by that. Saying that does not mean I didn't listen to her complaints. It doesn't mean I didn't sit with her as she cried. But it does mean that I have to 'encourage' her to see something bright in all of the darkness and there is nothing wrong with that. I literally said all of the things you said in your post from acknowledging her feelings to saying I hear her and being sad about everything and not being able to change things or 100% relate because I'm not in her shoes.
Of course, you’re sad. As Alva said so beautifully, your mother is grieving. You’re grieving too.
It’s so apparent how much you love your mom. It’s really hard to say goodbye to the life that you shared with her in the past.
Just read your response to Alva, you know your mom best and it sounds like she goes into an endless loop, ruminating about everything! In this case, I certainly understand that you cannot listen to the endless chatter. This is a tough situation!
Do what you can to improve her life and accept how she feels about her life as it is now. Allow yourself to honor your own feelings as well.
Wishing you peace as you continue on your caregiving journey.
This is also extremely risky and unsafe! One fall or bump in the road could be deadly for her. At the very least, you’re almost guaranteed she will break a bone.
So many times, people only want to be heard.
They aren’t looking for a solution because they know that there isn’t a viable solution. They are grieving for the lives they once lived.
Beautiful sentiments and beautifully said, Alva!
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." So noted, Alva. Stashing this away for future interactions with my MIL.