My mom lives in AL with different levels of care. She has her own little room with bath and goes to the dining hall for meals. She was diagnosed with MCI a few years ago and it's continued to decline. It's like her mind is just gradually going away completely, so strange because she was always curious and interested in things and ideas. So far she still knows who I am and who she is, but It's not possible to have a conversation with her, because she has no points of reference or common understandings. She has few friends and has always been introverted and prone to depression, and now that you can't really converse with her (and her friends are getting older too), she doesn't have much to do. She sleeps a lot, more all the time.
I feel like a terrible person, because I absolutely hate going to visit her. The smell of the dining hall, the elderly infirm people on walkers and in wheelchairs, the moment of entering her room and seeing her asleep again, waking her up and getting her to put on her glasses and hearing aids, the laboring to make small talk, answering the same questions as ever and being unable to get her to understand what I do for a living, on and on. I just hate it.
Last time I went, she was fast asleep as usual, and I just couldn't. So I tidied up, checked her supplies for what she might need, then just left a note and went home.
I used to be able to get myself over there once a week, then it was every 2 weeks, now every month. I'm in an intensifying spiral of guilt - resistance - guilt - resistance.
What is wrong with me? She's a sweet little old lady. She can still be very funny at odd moments. Or infuriating too. I know I have a lot of baggage from the past when she didn't take very good care of me. Maybe I haven't forgiven her? I don't know.
Has anyone here stuggled with these kinds of painful, conflicting, confusing feelings? I wish I understood it better. I feel so bad about it all the time. Thanks for listening.
Sending you a hug and hoping the both of us can get past the guilt and know that we're doing our best.
I would be totally horrified if I stepped in poop too! Anything involving poop is, to me, pretty horrifying, and tends to stick in my memory, coming back to haunt me in the wee hours.
I've stopped trying to have conversations with her beyond the questions about my job she always asks and that I've developed stock answers to. Other than that, if the day is fine, she usually wants to go to the garden, so we can sit there saying nothing but it's nice to be outside looking at the flowers and just being together. If it's crap weather, or if she's having a bad day, I literally just go in, say hello, tell her I just wanted to stop by to say hi, it's good to see her, and give her a kiss and leave. It's about a 5 minute visit. She appreciates it, but since she doesn't remember how long it's been since I last visited, and her sense of time is changing, a loving 5 minute visit can actually be better than an awkward 1 hour visit.
Honestly, too, having read a lot of AgingCare posts over the past months gives me new appreciation for the fact that she's relatively compliant, sweet at core, ambulatory, continent, and not demanding or - what seems so common - beset by personality disorders or mental illness.
So now because it's been 4 weeks, I know when I get there I'll be faced with a lot of "oh where have you been?" which makes me feel suuuuuper guilty... She's with it enough to know most of what goes on: who has been by, who hasn't, etc. It's a curse to have most of your marbles at that age I think!
But yeah: I love her, but I hate being in that nursing home, despite knowing it's the best place for her and that she's safe and clean (ish) and fed (ish). It smells like pee. Everything's ugly. The people there are scary reminders of my own mortality. It's institutional and depressing and a 40 minute drive across a bridge both ways. It's half my day to visit her, no matter what! God that sounds so whiny and petulant, and I am sorry! But I feel you.
I think I am going to write about some of the funny things that I see when I go visit her. In a way, the NH is a drama all its own, a cuckoo's nest full of characters! And my Grandma is just the cuckoo there that I happen to love.
You didn't create this situation. No guilt.
Keep visits short. Make them infrequent. Bring a little something. Treats, something to look at, etc.
I take my mom old magazines, like Ladies Home Journal, Good Housekeeping. It doesn't matter they're 10 years old. She looks at the pictures, gleans what she can from the articles. She loves them. When she's done with the magazines, she or I pass them on to another resident and they circulate through the facility. Sometimes they end up back at Mom's! LOL
She loves certain treats that don't require refrigeration. I bring them to her. No, they probably aren't good for her but hey, she's 93. They make her happy. That's what counts.
I try to keep topics neutral, try not to stir her up. Sometimes take her for a little drive, to a store, or something. Never let her see my shock or pain at anything she says. When I can no longer redirect the negativity (anywhere from a few minutes to 2-3 hours), I say, "Oh Mom! So-and-so's expecting me! Gotta go!" I give her a quick hug before she starts the woe-is-me diatribe and leave.
Sometimes I go home depressed for days. It takes that long to shake off the anger, frustration, pain, and sadness I had to suck up. I walk a tightrope between Mom's self-made hell and my own emotional stability. If I don't take care of myself, I won't be able to take care of her.
No one gets to decide for you how often or how long these visits. Do what's right for you. Brush off criticism. You're in this for the long haul. You didn't create this situation. No guilt.
I know what you mean.
Big hugs and thanks, CantDance.
i feel ya!
my mum has mixed dementia and in AL. She has her own flat in a wonderful facility, but keeps packing to move ‘home’ ,she has lots of fight in her. I’ve tried everything, such as gently talking about it - to notes plastered on cupboard walls. She can be slightly aggressive, but she is also is sooo relieved when I see her. I buy her food every week, and see her twice a week but I too hate going round. Your end paragraph really resounded with me as my mum too , struggled bringing me up. She had mental breakdowns and we were never emotionally close, it was more mechanical if you know what I mean. I was and am very jealous of people where their mum is their best friend. It does make it hard to ‘care’ for their needs, I just keep telling myself she didn’t ask for this condition, but would she be there for me in the same way if it were the other way round?, maybe not. She once told me of a time her dad was ill when he was old, and she never used to visit him as it ‘upset’ her too much, so he died without her saying goodbye, so sometimes I feel it’s hard to put up with her constant anxiety and sadness as it does rub off onto me of course, but I take each day as it comes, that’s all we can do. I just wanted to say I feel you and agree and understand. Take care Elaine x
Also, of course, she isn't the same mom I did know, she's just emptier and emptier. Maybe I'm like her - something is missing in my emotional makeup that has to do with compassion, connection, love expressed (as opposed to stated in a rational way).
She can also be very catty and judgmental toward others, and is hard of hearing, so she'll shout-whisper mean things about the other residents. Those times, I actually don't like her very much. I will tell her that what she said was mean and that others can hear her, and she'll just smirk. My heart sinks when that happens, I tell you.
"Do what you can, and what you can live with." Thank you.
When I feel overwhelmed by guilt about my decisions of how to best care for my parents (Dad can’t speak and has other mounting impairments after a series of strokes. Mom is 88, and still in some denial about her own limitations) while still holding onto what I need for myself, my husband, and my son with autism, this is my mantra:
There is a world of difference between feelings and actions. I can’t control my feelings, but I can control how I act on those feelings.
So for example, I made the same decision you did about cutting down on the frequency of my visits, which were not only getting harder on me, but also on my Mom, who is still together enough to try (but fail) to put on a brave face for my benefit. Now I visit less frequently, but can be more present for both of my parents while I am there. I also check in with my own feelings while I’m there. When Mom (who never had very much control over her snappishness) starts to lose her temper, I find a way to excuse myself gracefully, to avoid an escalation, and since I really do have a long-drive through NYC rush-hour traffic, at least it’s an honest excuse.
So yeah, I often feel guilty, frustrated, and angry that I don’t have more to give them, but remembering that I’m giving everyone who needs care the best of what I have to give helps a little.
So I have to remind myself, I am showing up for her. Part of this is my own expectations of myself, maybe they're a little unrealistic. Maybe I'm not a "terrible person." None of us on here are. We're all struggling with difficult feelings and situations. Some of the stories I've read here just boggle my mind. I don't know how people get through it.
As my mother's short term memory deteriorated we came to a point where the discussions we used to have over politics, current events, books we read and family dynamics just didn't work anymore. Since her long term memory is still good, we converse about the past. Going through photo albums and talking about where a picture was taken or what was going on when the picture was taken still works. I have learned so much about my older brothers' childhoods and my mother's younger years. There's a FB page where people show old photographs of the town so I print those out too for conversation starters. Mom also liked music and often sang while doing housework, so we sing too. Even when Mom doesn't join in the conversation all that much, she still really enjoys hearing about her grandkids and great-grandchildren or seeing photos of what they are doing. She may not remember it an hour later, but we still enjoyed the telling/interaction. After you have made this transition, it's so much easier to really enjoy your visits again.
My mom and I do connect in one way: on a beautiful day if I have the time, we'll go sit outside in the little garden, and I can tell she is just so happy to be there at that moment looking at the flowers and plants, commenting on the interesting leaf shapes or the way the light comes through the trees. That makes me happy, to see her happy and kind of being more her own self. She was always very visual, was a photographer and then a painter. Thank goodness her macular degeneration was stopped in its tracks.
Fast forward to mid stage Alzheimer’s. I (the only child) had to intervene. We had her at our house for 3 months but that physically and mentally didn’t work. She’s been in memory care for 3 years.
She’s in stage 6 Alzheimer’s and has (finally) lost her narcissism. I like her a lot more now! She even told me a few months ago that she loved me (although she didn’t know our relationship). It brought a tear to my eye, as I’d waited 61 years to hear that.
I guess being a nurse helps me tolerate the other residents and their smells/sounds/looks and the building.
I’ve forgiven my mom for not being the mother I wanted and needed. She needs me to watch over her and I need to do that. However, I also visit for only 20 minutes at a time, because we are both “done” by then. We visit once or twice a week. She’s in better physical shape at 96 than I am at 62!
Try forgiving your your mom for not being who you needed her to be. Maybe you will see your visits in a new light.
Found out mom's nurse was gluten intolerant and brought GF treats. It makes a difference.
When my doc noticed, I explained that ice cream and white wine were getting me through this stressful period in my life. He told me that Bourbon was probably a better idea. Ps I've lost the weight.
You crack me up!
Thank you so much.
I want the best for her and am trying to stay strong. It does help to know that others share the same feelings/experiences. Do what you can for her and remember not to be too hard on yourself. Hang in there!
Also, I struggled with that feeling of "owing" my mom. But then I thought, wait a minute, SHE decided to have me - I didn't ask for it! When you're a mother, you give to your children and that's that. There's no moral obligation or law that says the child now is required to reciprocate. When the relationship is, shall we say, "mixed" as mine with my mom is, it's even harder to justify putting that guilt trip on yourself.
And the real point of that is to just remove that guilt and keep removing it when it comes back. You have the best intentions for her, you continue to show up and do your best for her. There is nothing to feel guilty about.
Then I'd push her wheelchair outside to look at the pond and trees or if the weather was bad, around the facility to see who was where and look out the windows at the weather.
Then back to her room and I'd cut her fingernails, trim her facial hair and lotion her up with something that smelled nice.
It was exhausting. But having a plan helped.
Thank you!
I try not to think negatively about mom before I go. I realized that when I did this, it was mostly my guilt trying to make her seem unreasonable/unpleasant so I could feel better (lots of guilt) about not taking her to live with me. I now tell myself that our visits are the highlight of her day and the least I can do is make her happy while I'm there. Even if it means pretending to be cheerful and wanting to see her. Hard because I'm not an actor and it goes against my nature, but I do my best. It has made a difference.
I've cut my visits down to 30-45 minutes, tops, unless I'm taking her to an appointment. The shorter time is more bearable for me, and it passes quickly. And I do the visit at the start of my errands, so I get it over with, then go on to do other things (groceries, shopping, banking, etc). I'll admit I even reward myself by doing a little shopping for myself afterwards sometimes. Now, I remember how good it feels to leave, with my visit done, and the rest of the day and next couple of days "free".
And as others have said, I've gotten to know some of the other residents. Some visits are spent sitting with mom and her 2 best friends and chatting all together. Also calling other residents by name and touching their hands or giving a hug - I know they appreciate this and it makes me feel good. I've had some nice chats with some of the staff too. This all personalizes my experience there and makes it seem less institutional.
These have helped me adjust my attitude. I learn a lot from these forums - ideas for doing something, or for adjusting my expectations. Hope this helps. It's a tough go.
Trish
My mom had one friend, but that friend has become quite old and in constant pain, and can't now really handle visiting my mom very much - but I visit her and we have nice conversations. She's an avid knitter, so she always shows me what she's been working on, and it's always something new, she's so fast. She also paints beautiful little pictures, so we talk about that. Or we'll talk about something about my mom - she does look out for her, which is a big help. It is a bright spot I sometimes reward myself with after I'm done with my mom.
I do not enter the nursing home without asking Jesus to go in with me. The sights, smells, sounds are all filtered through the love of God. Is it all wonderful? No, but I experience it all in a way that is bearable and has purpose. There are many other residents there that I have grown to care for and who welcome me like a relative. Yes, they are old, demented, and often outwardly unlovely, but I greet and visit with them anyway. All through the grace and power of God. Of myself, I could not do this because my natural inclination is to shrink from, avoid or flee. I sometimes marvel at my own reactions now and how they have changed. To God be the glory.
I read a couple other posts where people felt guilty that they wished their loved one would die. I have that thought too at times. How can she stand the emptiness of her life? Sometimes I think that she has "decided" to pass the time by sleeping, and one day she just won't wake up.