My mom has lived alone for the past 20 years and was always very independent, even when my dad was alive. I live three hours away from her, and despite my best efforts to get her to move closer to me for the past ten years, she insisted she wanted to stay in her own home. Around this time last year I started to notice some forgetfulness, but chalked it up to her age. About six months ago she was hospitalized for three weeks because of a blood clot and she was close to a diabetic coma for not taking her insulin. Her neighbors didn't see her and she didn't answer her phone, so they let themselves in and found her semi conscious. She accepted help when she first came home from the hospital, but as soon as she started feeling better, she let the woman go and said she was perfectly capable of taking care of herself. That started the nightmare. I was visiting her every weekend, trying to take care of her every need. I finally told her if she didn't want to have help, I could not take the place of a nurse or aide. She is very pleasant most of the time and but insists she takes her medication consistently although her weekly bloodwork shows otherwise. I called her every day to remind her to take her medication until she told me it was too annoying to have me always checking up on her and wouldn't always answer the phone, so I cut it down to a few times a week. I've written lists for her and taped them around the house. The pharmacy now delivers her medication in a weekly blister pack with all the pills for the day in a clearly labeled container, but she doesn't always take them. I've gotten her an alarm clock that will go off to remind her to take her pills as well. Nothing seems to help. She'll tell me she takes her pills and knows how important they are to stay healthy, but yet most of them are still in the pack when I go visit. She had a home health aid come in the summer, and after 5 days she called the agency and told them not to send the woman anymore. Her neighbor is very helpful and tries to check up on her, but she gets angry and tells her she doesn't need the help. I don't know what to do. Outside of her doctor and medical team saying she needs someone with her for a few hours on a daily basis, they offer no suggestions. My sister wants no part of caring for my mom, so it's just me. I'm at my wits end, constantly worried about her and terrified something is going to happen to her. She wears a medical alert pendant in case she has a fall but that's the only thing she'll agree to. I know she needs help, there is no doubt about that.
She has always been terrible about her diet, ever since I was a kid, and she still gets take out meals and eats all the wrong things, even though she has a freezer full of healthy, easy to prepare meals I fixed for her. Every time I go visit, the food is still there. She'd rather get Chinese and pizza. I am so tired of everyone telling me she needs help - and I feel very judged, like I'm not doing enough for her, and very guilty. The last time I spoke to her doctor and she told me mom needed an aide a few hours a day, I asked her what she advised me to do to make her open the door and let the help in. Of course she had no answer to that. I am also always reminding extended family who are "concerned" about my mom that I have a six hour round trip to visit my mom and can't be there all the time.
I've talked to her until I'm blue in the face and she refuses to accept her limitations. She doesn't want anyone in her house. My grandmother was like that too, and it drove my mom crazy. I just don't know what to do. Has anyone else been in this situation or can anyone offer any suggestions? I appreciate and welcome any thoughts or comments.
Thank you.
I am so thankful I found this site, there is so much to learn from everyone here.
This provides a way not only for neighbors but for emergency personnel to get in the house. And the neighbors can still come and call the EMTs if necessary, but this is an added level of access for legitimate reasons.
As to the refusal and lack of cooperation, I'm guessing that most of us reading this post are nodding our heads as we've seen this too. Unfortunately you're not alone.
I think there's a kind of "no-common sense zone" that elders go through as they realize they're beginning to lose their memory, balance, health, and control of life they once had. And since I periodically feel that way as well, I understand that fear, as well as the desperate attempt to insist that they can manage their own lives, even if they know secretly that they can't.
I'm only 71 and find myself planning to do things that inherently I feel I'm not safe undertaking. Yet there's always the counteracting query to myself: "if I can't do it, who will, as a I have no assistance and the neighbors who used to help have all moved out?"
As others stated, sometimes it takes something serious, such as a fall and fractured leg or hip, to be a wake-up call. All you can do in the interim is put into place the mechanisms to address that emergency when and/or if it happens, which it seems you're doing.
When people suggest to you that you do a - z to take care of your parents, they could be just trying to be helpful, but they also be meddling. I got tired of this very quickly, as you apparently have. Sometimes you can ask them specifically how they expect you to do a - z when you're x miles away and when your mother doesn't feel it's necessary, and tell them when they have a viable answer, BASED ON THEIR CAREGIVING EXPERIENCE, then they should contact you.
Some of the accidents elders have are random; they could happen when you're standing next to her. That's been my experience. And, unfortunately, sometimes it does take these kinds of spontaneous scares to help elders realize they do need some help.
I was thinking the other day of how babies learn to walk. They're literally fearless; they just keep trying, falling, plopping on the floor, getting up and trying again. But eventually they learn. Elders also keep trying, but eventually they fail, or fall. Big difference.
Then the issue is of how to provide support while maintaining their sense of independence. It may be that you have to emphasize those things she can still do for yourself while minimizing those she can't. Instead of asking if she's taken her meds, or if she's done this or that, try something to the effect of:
"Mom, I know you're a strong person and can take care of yourself (clue: watch her face to see if there's a slight change indicating she knows this isn't true.). But if you ever need anything, you know you can call and I'll come as quickly as I can, or arrange for assistance. But I'm not going to ask you about taking medicine (add other issues) b/c I have confidence that you're responsible and don't need my oversight." (Try not to appear as though you're lying.)
It may not reassure her, but at least you've stated you're backing away, and the responsibility is now HERS, and hers alone, albeit you're waiting in the wings if something does happen.
Sometimes there will come a point when she may hint around and infer she needs some assistance. If so, recognize it as an opener, not a completely open door, but a door that's just been unlocked.
I know even if I lived next door to my mom I can't keep an eye on her 24/7, but it would be nice to be able to check in and see her a few times a week for an hour instead of once a month for an entire weekend. I was down to visit last weekend, and I've come to dread going because I'm so scared of what I'll find. My mom is happy and very pleasant 99% of the time, but in the past month or so I notice she can get angry easily when she thinks I'm butting in, so I try to back off. She's also hung up on me when she doesn't want to hear what I have to say. My main concern right now is her not taking her medication, but I am doing everything I can to help. Last year with the bad winter we had, I wasn't able to get to my mom's for two months. She lives in the city and parking is nearly impossible when the streets are loaded with snow. I worry about this winter being the same, and have even tried telling her it would give me peace of mind if I knew she had someone helping her in the event I can't get down there, but nothing works with her.
I am trying to just let it go as far as feeling guilty all the time is concerned, but its so hard. My husband always tells me I have nothing to feel guilty about, but sometimes it takes another voice to make you believe it. I'll keep trying.
It's disappointing to me that my sister wants no part of helping my mom, so at this point I don't even call or email her to tell her what is going on anymore, since she never replies. That's a whole other story though. I'm very excited about learning all I can from the people here and hopefully, trying to help others as well. Thank you!
Like Windy said above, we have to wait for a crises to happen.... some times even a crises isn't a wake up call as you found out when the neighbors found your Mom semi conscious. We need to wait for crises #2 to happen, and maybe #3.
My parents were the same way. The doctor recommended caregivers around the clock since my parents lived in a house with many stairs. Mom didn't like that idea at all and after 3 days she shooed them out. She thought she and Dad could handle everything on their own. Oops, a few days later 911 was called as Mom had a fall. This time she didn't get to come home to prove she can still do everything, she's now in a nursing home... Dad is enjoying the caregivers and he has said he is glad they are there because he knows he is a major fall risk.
And this really struck a chord: "I am so tired of everyone telling me she needs help - and I feel very judged, like I'm not doing enough for her, and very guilty." OH YES. My mom's small cadre of family and friends waste no opportunity to tell me -- explicitly or implicitly -- that if I were doing more for mom, she wouldn't be in the mess that she's in. Mom's neighbors think I'm a card-carrying a**hole because my car isn't in her driveway as often as they think it should be. It's crushing. But as Windyridge said, screw the guilt. More easily said than done, but it's the only way you'll get through this in one piece.
You are aware, you have made helpful suggestions, you are monitoring her situation, and you are ready to guide her when she chooses to take action......or when an emergency dictates. As long as mom refuses to leverage the resources she has to improve her plight, this is truly the most that you can do. (And extra points for your "on the sly" missions! I can relate.) Hang in there. You'll find lots of good support on this forum.
Trust me, you are doing all that is possible at this point. Screw the guilt. We are both, along with many others, in that maddening no mans land of folks not quite incompetent enough to force them to accept in home or facility care. In my case I know it will be crisis driven. There will be another fall, ER trip, Dad gets lost, diabetic coma etc that will force the issue. May be tomorrow or next year.
Don't fight and argue with her, it's a waste of time and will just agitate her. Do what you're doing and maybe some stuff on the sly, don't hesitate to use a little fibbing and conniving to protect her from herself.