Sometimes I just want to scream when other family members give advice.

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I am caring for my mom full-time minus 8 to 12 hours a week. Here is an example. Did Grandma every work with an occupational therapist? I know a good occupational therapist that could work with Grandma's hand. Here's the problem. Grandma doesn't want to do it! Instead of giving all this advice. Why not help spend time with Grandma!


It is hard! But, understand that is their way of trying to help. It doesn't even sound like advice, but definitely a suggestion. She would not have to go out to go to an occupational therapist. They would come to her, to work with her in her own environment, and it is covered by Medicare but needs a doctor's script. Talk to her doc about getting one, it would help her. And the therapists that work with the elderly enjoy their jobs, they certainly aren't doing it for the money as the Medicare payment for these sorts of services are not that great.
Some advice is absurd (we've all gotten that) and some is more useful. If the intention is well-meant, listen politely and say, "I'll consider that," or something similar. "Advice" given in the spirit of "you don't know what you are doing and I know better than you," well, that's the kind that we all want to avoid. Change the subject.
I live with my grandma and have cared for her alone for 4 years now since my mom was sick with cancer and together with my mom for a really long time. My sister left home at the age of 17 and never looked back. She is now 37, me 38. I recently moved grandma and myself up to live down the street from her and her family hoping that with both of us being so sad about my mom passing away, that being around family and her kids, it would perk us both up. It worked wonderfully and grandma loves the kisses and hugs she gets each morning and night and watching the great-grandchildren play, dance, go to their concerts, and having dinner each night with them. The only problem is my sister is always offering advice on how to deal with grandma. She's always comparing her to her children stating that they are just alike. Now I agree she acts like a two year old in a lot of ways but there is huge differences between babies and dementia grandmothers. Most of the time, her advice is that she would have just put her in a home rather than deal with her as she puts it. It seems like any concern or issue I have, Rachel says, "Just put her in a home, I would." It's frustrating to say the least.
Even if a doc writes the script for in-home therapy...if Medicare decides that she is not home-bound..Medicare will not pay for it.

Just cause you get a doctor o write a script for something...that does not mean insurance will cover it. Especially Medicare.
Dear herdaugther1,

I hear you. When you are the one caring for a loved one 99 percent of the time, any suggestion can sound like a criticism. And it can be very irritating like you said when what is required is more basic like visiting once a week or month.

I was the primary caregiver for my dad. All I wanted was an offer of help or some validation and acknowledgement of my time and efforts. I know people mean well with their suggestions but sometimes I was so frustrated and resentful, I couldn't hear anything without being mad.
Littlemisskitty, you are absolutely correct -- a dementia grandmother is NOT like a young child. The most important difference is that a child is in learning mode and a person with dementia is no longer able to learn -- in fact, is in forgetting mode. This makes a huge difference in how to deal with them. With the child you are teaching, with the dementia person you are comforting and protecting.

And there are the obvious differences that come from size, experience, relationship, and goals. Someone at the end of life has different expectations and needs than someone at the beginning.

So you are right. Would Sister listen to a calm explanation of why an 87 yo should not be treated as a 2 yo? Try it once. If she persists in that advice don't respond to it and change the subject.

Sister thinks grandmother should be in a care facility. Sometimes that really is best, but it doesn't sound like Sister is offering well-thought-out advice based on concern for GM. In any case, since you know that will be her reaction when you share concerns, stop sharing concerns with her. She isn't offering specific advice on the concern or empathy for your feelings. But you do need to talk about your concerns. Is there any friend, cousin, etc. you can discuss GM with? Do you have a religious leader? Can you join a support group? An in-person contact is best, but it can also be useful to interact on a forum, such as this one. Instead of telling your sister that grandmother has started doing X and you wonder how to respond, post here! You can post here several times a day if needed. And when you can answer some other person's post, that helps reaffirm the truth that you are a capable caregiver.

It sounds like the new living arrangement is quite successful in many ways. Cherish the success! Unfortunately it comes with increased annoying "advice" from your sister. Perhaps that is a small price to pay for the pleasure GM gets from being close to her great-grands.
I hear ya, herdaughter1. Even though my mom is living with me, my daughter and ex husband suggested "someone" (me) needs drive back and forth to her house in GA to check on things every month. LOL I told them that they were more than welcome to do it in their "spare" time. The thing is everyone means well. But they really don't want to step in and help out. Just smile and say thanks and move on.
I haven't encountered this situation, because, no one was interested at all with my cousin, when she became ill. No calls, no visits, no inquiries, nothing.......but, I just wonder, if you feel like it, could you educate the family members who make the suggestions. Like, about the physical therapy. What if you say, mom isn't interested in it. However, if you were to come over and convince her to get interested and make the appointments and see if insurance will cover it and forth. It might complicate it initially, but, then they can see that it's not that simple.

Hypothetical: If they ask about mom eating right, thank them and see if they can bring a bag of groceries by every week or take her to dinner a couple of days a week. So, that assigning them responsibilities will bring them in on helping and not just making blanket statements.

Also, you can offer an explanation that you learned from experience, that they may have no way of knowing.

I'm not sure what is ailing your mother, as it's not listed in your profile, but, is it more than mobility issues? I recall that years ago whenever I spoke with people who had parents with dementia, they never said much about the facts. If I ever made a comment or question, they just didn't say much. As a result, I never learned anything about it. Man, was it a shock when it hit me out of the blue with my cousin. I'm not sure why those people never spoke up. Maybe, they were just too exhausted.

I just think there's a lot of information that could be shared that might benefit us all.
I'm sorry, I know it's hard. I think we've all been there. I would listen to them, just because it can allow them to feel more involved, but remember you don't have to listen to them. For example, my Grandma was complaining to my other Grandma (her daughter) that she hadn't gone "#2" in a couple days. She hadn't eaten anything really. I think it had been 1/2 a banana, 2 bites of a slice of toast, and 3 or 4 bites of oatmeal in 4 days. She's not eating enough to "go". Anyways, so she started complaining about that, so my other Grandma started getting mad at me. Telling me I need to feed her better, and she's constipated. That I need to be giving her a full course meal, and when I talk to the doctor I need to bring it up and make sure that she knows. She even sent 5, yes 5 containers of Metamucil. I just let her think that she contributed to the care of my Grandma, even though if I did treat it like she was just constipated I could me her very sick. It's just personal preference though.

Keep the conversation going (or start a new one)

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