Alzheimer's
June 24, 2015 7:45 PM Subscribe
My grandmother is in the early stages of Alzheimer's. She has been for at least a year or so. She's the only family member from that side of the family that I keep in touch with, and I live on the other side of the US. How do I bring it up?
I have been around Alzheimer's enough that I know what it looks like. I'm pretty certain about it by this point. My grandmother has also been around Alzheimers and may know what it looks like.
My grandmother has enough family who live very near her that I know they'll take care of her as the Alzheimer's progresses. Which is a relief, because while I would love to help out, my life is on the other coast.
The thing is, my grandmother has always been stubborn and independent. Does she want to know if she needs to look into this? I'm not sure. Does she already know, and want to keep it to herself? She might. Does half my family already know? They might; they've seen it happen before. But I'm not in touch with anyone but my grandmother. She's the only one I ever talk to. There's an aunt I could probably ask - she's a social worker. But I wouldn't know how to bring it up. There's a cousin who visits my grandmother regularly, he's college age, so asking him could be more casual and less pressure. Or I could ask my grandmother herself. Maybe I should talk to my grandmother.
I'm not even sure what I would be talking to my family about. Do I even need to bring this up at all? Maybe it's better for her to not have that label at this time, there will be time for it later?
Please be gentle in your responses. My relationship with my grandmother means a lot to me.
I have been around Alzheimer's enough that I know what it looks like. I'm pretty certain about it by this point. My grandmother has also been around Alzheimers and may know what it looks like.
My grandmother has enough family who live very near her that I know they'll take care of her as the Alzheimer's progresses. Which is a relief, because while I would love to help out, my life is on the other coast.
The thing is, my grandmother has always been stubborn and independent. Does she want to know if she needs to look into this? I'm not sure. Does she already know, and want to keep it to herself? She might. Does half my family already know? They might; they've seen it happen before. But I'm not in touch with anyone but my grandmother. She's the only one I ever talk to. There's an aunt I could probably ask - she's a social worker. But I wouldn't know how to bring it up. There's a cousin who visits my grandmother regularly, he's college age, so asking him could be more casual and less pressure. Or I could ask my grandmother herself. Maybe I should talk to my grandmother.
I'm not even sure what I would be talking to my family about. Do I even need to bring this up at all? Maybe it's better for her to not have that label at this time, there will be time for it later?
Please be gentle in your responses. My relationship with my grandmother means a lot to me.
It's a hard conversation, but if you are close with your grandmother, and if she is still alert enough that she would be able to talk about it, I think you should talk to her directly. I am meeting more and more people in the very early stages of Alzheimer's who know about their disease and are seeking support NOW. There are even special support groups for people with Alzheimer's that she could go to on her own.
Most of the people I've known with Alzheimer's disease have known something is wrong and have tried to hide it from their families. I think it's great that you want to have an open dialogue with her--alz doesn't mean she has to give up her independence, at least not yet, and she shouldn't have to be ashamed of the changes she probably knows are taking place.
Also, she should see a neurologist ASAP. That can help rule out other possible causes for forgetfulness/confusion, and help her understand how to cope with the disease to stay independent for as long as possible, even though there is no cure.
The Alzheimer's Association site, especially Know the Ten Signs and the doctor's appointment checklist are a good place to start once you've broached the subject...good luck, you are a great grandson!
posted by assenav at 9:25 PM on June 24, 2015 [6 favorites]
Most of the people I've known with Alzheimer's disease have known something is wrong and have tried to hide it from their families. I think it's great that you want to have an open dialogue with her--alz doesn't mean she has to give up her independence, at least not yet, and she shouldn't have to be ashamed of the changes she probably knows are taking place.
Also, she should see a neurologist ASAP. That can help rule out other possible causes for forgetfulness/confusion, and help her understand how to cope with the disease to stay independent for as long as possible, even though there is no cure.
The Alzheimer's Association site, especially Know the Ten Signs and the doctor's appointment checklist are a good place to start once you've broached the subject...good luck, you are a great grandson!
posted by assenav at 9:25 PM on June 24, 2015 [6 favorites]
Also, she should see a neurologist ASAP. That can help rule out other possible causes for forgetfulness/confusion
This is a really good point - and in addition to other possible medical causes, older people become more sensitive to medication side effects and interactions; any number of things could cause the symptoms you're noticing.
As far as who to approach, I think it depends on what your grandmother's like. If she's always seen herself as invulnerable and independent, and she hasn't been diagnosed, she may not want to hear what you're saying, or may respond in anger. In that case, a much more indirect approach, by someone who's nearby, might be more effective. (For example, by starting to go along with your grandmother to routine medical appointments, so that she may start to trust that person with more intimate information, and also so that person can start to get to know her doctor, with your grandmother's consent, of course.) And as you say, she may already have a diagnosis, but not yet be prepared to share it beyond a few people who absolutely must know. I would think that if that's the case, your aunt might have a better read on things than your cousin.
If you wanted to try talking to your aunt (personally, I would call rather than write, because you get more kinds of information that way) - you could say that you know it's been a while since you've talked, but you're worried about your grandmother - you've noticed a few behaviours that make you think she might have the beginning stages of Alzheimer's (and then describe them concretely). Has she noticed anything of concern?
(What kind of other hurdles are involved in reaching out to your aunt? Were you just never very close, or did something happen to break the relationship? If you update a bit on this, maybe someone will be able to offer more helpful words.)
It might be that your family members have things in hand. It may also be that they're each individually struggling with recognizing or admitting changes to themselves, and would benefit from hearing their concerns confirmed out loud.
posted by cotton dress sock at 10:17 PM on June 24, 2015 [1 favorite]
This is a really good point - and in addition to other possible medical causes, older people become more sensitive to medication side effects and interactions; any number of things could cause the symptoms you're noticing.
As far as who to approach, I think it depends on what your grandmother's like. If she's always seen herself as invulnerable and independent, and she hasn't been diagnosed, she may not want to hear what you're saying, or may respond in anger. In that case, a much more indirect approach, by someone who's nearby, might be more effective. (For example, by starting to go along with your grandmother to routine medical appointments, so that she may start to trust that person with more intimate information, and also so that person can start to get to know her doctor, with your grandmother's consent, of course.) And as you say, she may already have a diagnosis, but not yet be prepared to share it beyond a few people who absolutely must know. I would think that if that's the case, your aunt might have a better read on things than your cousin.
If you wanted to try talking to your aunt (personally, I would call rather than write, because you get more kinds of information that way) - you could say that you know it's been a while since you've talked, but you're worried about your grandmother - you've noticed a few behaviours that make you think she might have the beginning stages of Alzheimer's (and then describe them concretely). Has she noticed anything of concern?
(What kind of other hurdles are involved in reaching out to your aunt? Were you just never very close, or did something happen to break the relationship? If you update a bit on this, maybe someone will be able to offer more helpful words.)
It might be that your family members have things in hand. It may also be that they're each individually struggling with recognizing or admitting changes to themselves, and would benefit from hearing their concerns confirmed out loud.
posted by cotton dress sock at 10:17 PM on June 24, 2015 [1 favorite]
This would be the time to get re-acquainted with other family members. Maybe write a note, email or call your aunt and ask "I've noticed Grandma is noticeably more forgetful. I'm sure you've noticed, too. Has she received a diagnosis? Is there any way I can be helpful? " Reaching out will give you a place to get information in the future if indeed your grandmother has Alzheimer's and as she declines.
Also, now is the time to go see your grandmother. With Alz, she'll recognize loved ones less and less as she declines, so go now while you can have a meaningful conversation with her. Tell her what she means to you, what you've learned from her example or counsel, and what you remember most about the times you've had together. You'll remember these conversations with fondness in years ahead, and they will help to overcome the feelings of sadness you'll feel when your grandmother can no longer remember your times together.
Best wishes as you navigate this journey.
posted by summerstorm at 10:51 PM on June 24, 2015
Also, now is the time to go see your grandmother. With Alz, she'll recognize loved ones less and less as she declines, so go now while you can have a meaningful conversation with her. Tell her what she means to you, what you've learned from her example or counsel, and what you remember most about the times you've had together. You'll remember these conversations with fondness in years ahead, and they will help to overcome the feelings of sadness you'll feel when your grandmother can no longer remember your times together.
Best wishes as you navigate this journey.
posted by summerstorm at 10:51 PM on June 24, 2015
I'm going to write as if a diagnosis of Alzheimer's is certain, but (as discussed above) obviously there are other possibilities. If nothing else, there are other forms of dementia and they progress differently.
I'm very sorry. I sympathize. This is a terrible spot you're in, with a lot of stress to go, for everyone involved.
I don't know "how" but I do know "should." Reticence is understandable. Alzheimer's is a miserable experience for everyone even tangentially involved. Bringing it up, if no one has noticed or wants to talk about it, will not be easy or welcomed. But if nothing else, in your shoes, I would want to make sure that someone is organizing the measures needed to care for an Alzheimer's patient when she will need it. In the case of Alzheimer's, there is a *lot* that must be done while the patient is still lucid.
If your family has not experienced Alzheimer's within the family before--not just "been around it" and seen the symptoms, but aware of the details of caring for an Alzheimer's patient--then they may not be aware of how much needs to be done right now. You can, at least, inform them of the necessity. *Someone* needs to be preparing to take care of grandmother's legal/financial/medical affairs when she no longer can--your family will have to determine who that "someone" is, and make sure they consult with a geriatrics attorney to arrange all the complicated paperwork. It is absolutely insane, the things you can not do without, for example, the correct power(s) of attorney (that must be signed long before it will be needed).
(Taxes. You have to file your taxes every year, even with just Social Security income--but without the right paperwork, it's not legal to submit taxes for someone with Alzheimer's who can't file it herself. Without the right paperwork a caregiver can not withdraw money/cash checks on the Alzheimer's patient's own bank account to care for the Alzheimer's patien, cannot submit insurance claims, cannot authorize medical procedures... It's extremely difficult if not impossible to care for someone with Alzheimer's without all the intricate pre-prepared paperwork.)
If everyone in your family is putting off thinking about the possibility, if everyone is in denial or just doesn't want to rock the boat, it may become too late for some arrangements before anyone realizes that they are necessary. Grandmother should be consulted on all of these decisions while she is still able, so she can state a preference if she has one. That won't be possible, later.
...
There is another reason to start taking care of Alzheimer's as soon as it is observed. There are many clinical trials going on right now, all of the time. Enrolling in one (or several) may be beneficial to the Alzheimer's patient.
And if not directly helpful to the Alzheimer's patient, enrolling in a clinical trial may be beneficial to the Alzheimer's patient's offspring, and to their offspring, by adding to the sum of knowledge about Alzheimer's.
posted by galadriel at 6:54 AM on June 25, 2015 [3 favorites]
I'm very sorry. I sympathize. This is a terrible spot you're in, with a lot of stress to go, for everyone involved.
I don't know "how" but I do know "should." Reticence is understandable. Alzheimer's is a miserable experience for everyone even tangentially involved. Bringing it up, if no one has noticed or wants to talk about it, will not be easy or welcomed. But if nothing else, in your shoes, I would want to make sure that someone is organizing the measures needed to care for an Alzheimer's patient when she will need it. In the case of Alzheimer's, there is a *lot* that must be done while the patient is still lucid.
If your family has not experienced Alzheimer's within the family before--not just "been around it" and seen the symptoms, but aware of the details of caring for an Alzheimer's patient--then they may not be aware of how much needs to be done right now. You can, at least, inform them of the necessity. *Someone* needs to be preparing to take care of grandmother's legal/financial/medical affairs when she no longer can--your family will have to determine who that "someone" is, and make sure they consult with a geriatrics attorney to arrange all the complicated paperwork. It is absolutely insane, the things you can not do without, for example, the correct power(s) of attorney (that must be signed long before it will be needed).
(Taxes. You have to file your taxes every year, even with just Social Security income--but without the right paperwork, it's not legal to submit taxes for someone with Alzheimer's who can't file it herself. Without the right paperwork a caregiver can not withdraw money/cash checks on the Alzheimer's patient's own bank account to care for the Alzheimer's patien, cannot submit insurance claims, cannot authorize medical procedures... It's extremely difficult if not impossible to care for someone with Alzheimer's without all the intricate pre-prepared paperwork.)
If everyone in your family is putting off thinking about the possibility, if everyone is in denial or just doesn't want to rock the boat, it may become too late for some arrangements before anyone realizes that they are necessary. Grandmother should be consulted on all of these decisions while she is still able, so she can state a preference if she has one. That won't be possible, later.
...
There is another reason to start taking care of Alzheimer's as soon as it is observed. There are many clinical trials going on right now, all of the time. Enrolling in one (or several) may be beneficial to the Alzheimer's patient.
And if not directly helpful to the Alzheimer's patient, enrolling in a clinical trial may be beneficial to the Alzheimer's patient's offspring, and to their offspring, by adding to the sum of knowledge about Alzheimer's.
posted by galadriel at 6:54 AM on June 25, 2015 [3 favorites]
I would bring it up directly with her. My brother and I tiptoed around my mother's AD for way too long, and we're both still a little haunted by that--she knew something was wrong, we're sure, but we all knew that it was going to be a big life change for us all, and we kidded ourselves about how bad things really were. Earlier discussions could only have helped us, because by the time we finally acted, her life had to be turned upside down almost literally overnight.
posted by feste at 7:44 AM on June 25, 2015
posted by feste at 7:44 AM on June 25, 2015
I'm a nurse, and work a lot with older populations.
I would recommend talking with her about it directly. As mentioned by others, there are many reasons why older adults get memory, attention, alertness and behavior changes. All of them are treatable to one degree or another. (Sometimes the degree is not very much, but even so, in ideal circumstances, a person should have the information to decide for themselves whether the small degree of improvement is worth pursuing while they still have the competence to make those decisions for themselves).
As far as how to go about it I would suggest: just be calmly direct and frame a lot of the conversation as questions and support. Ask her how things are going for her regarding topic X (her memory, attention or whatever) and whether she's had success with whatever she's done to manage her issues. For example: "I noticed you seem like you've been having some problems with your memory recently. Have you noticed anything like that?" "Wow, that sounds really rough. Have you seen your PCP?" or, "what about a neurologist? Did your PCP say anything about that?"
Most people, in my experience, respond surprisingly well to direct conversation about difficult topics, as long as one is careful to approach from a perspective of vocally valuing that person's comfort, wellbeing and autonomy. So something along the lines of "I feel really awkward bringing this up, but I love you and I want you to be happy" or "I know how much you value your independence, so when I noticed your problems with X, I felt like I should say something, so you can decide for yourself what to do".
It is true though, that while most people respond well to directness that comes from a place of kindness and care, some people don't want to know about their troubling illness and/or symptoms. But in general, those people can manage their denial pretty well even in the face of direct conversation. If your grandmother turns out to be one of those people, she may become temporarily angry at you. If so you can apologize and reiterate that you love and care about her and that if she ever wants to discuss anything, regardless of what it might be, she can always come to you. Then you can let it go for a while, and either contact other family members or bring the topic up directly with her again later.
If you end up needing to contact her family (for example, if she prefers to go the denial route but seems unsafe in her home or if she already seems like she might not be competent to handle her daily affairs or her medical care), I recommend more or less the same strategy as with your grandmother. Something like "Hey, I'm sorry if I'm intruding. I know we don't talk very often and this is kind of awkward. But I've been noticing some changes in grandma's X and I've been worrying about her. Have you noticed anything like that?"
posted by shiawase at 2:54 PM on June 25, 2015
I would recommend talking with her about it directly. As mentioned by others, there are many reasons why older adults get memory, attention, alertness and behavior changes. All of them are treatable to one degree or another. (Sometimes the degree is not very much, but even so, in ideal circumstances, a person should have the information to decide for themselves whether the small degree of improvement is worth pursuing while they still have the competence to make those decisions for themselves).
As far as how to go about it I would suggest: just be calmly direct and frame a lot of the conversation as questions and support. Ask her how things are going for her regarding topic X (her memory, attention or whatever) and whether she's had success with whatever she's done to manage her issues. For example: "I noticed you seem like you've been having some problems with your memory recently. Have you noticed anything like that?" "Wow, that sounds really rough. Have you seen your PCP?" or, "what about a neurologist? Did your PCP say anything about that?"
Most people, in my experience, respond surprisingly well to direct conversation about difficult topics, as long as one is careful to approach from a perspective of vocally valuing that person's comfort, wellbeing and autonomy. So something along the lines of "I feel really awkward bringing this up, but I love you and I want you to be happy" or "I know how much you value your independence, so when I noticed your problems with X, I felt like I should say something, so you can decide for yourself what to do".
It is true though, that while most people respond well to directness that comes from a place of kindness and care, some people don't want to know about their troubling illness and/or symptoms. But in general, those people can manage their denial pretty well even in the face of direct conversation. If your grandmother turns out to be one of those people, she may become temporarily angry at you. If so you can apologize and reiterate that you love and care about her and that if she ever wants to discuss anything, regardless of what it might be, she can always come to you. Then you can let it go for a while, and either contact other family members or bring the topic up directly with her again later.
If you end up needing to contact her family (for example, if she prefers to go the denial route but seems unsafe in her home or if she already seems like she might not be competent to handle her daily affairs or her medical care), I recommend more or less the same strategy as with your grandmother. Something like "Hey, I'm sorry if I'm intruding. I know we don't talk very often and this is kind of awkward. But I've been noticing some changes in grandma's X and I've been worrying about her. Have you noticed anything like that?"
posted by shiawase at 2:54 PM on June 25, 2015
« Older How does job hunting work while transitioning... | Looking to replace a Nexus 4, overwhelmed by... Newer »
This thread is closed to new comments.
It sounds early stages? Maybe consider establishing a scaffold of support for the future, not figuring everything out immediately.
I am sorry about your grandmother. I know how it is.
posted by A Terrible Llama at 7:53 PM on June 24, 2015 [2 favorites]