“My Dad’s Wife Won’t Quit Discussing His Alzheimer’s with Me”
My dad’s wife, “Megan,” has been great. It must be an extraordinarily stressful situation, and I am so, so grateful for her. My issue is that whenever I am visiting with them and my dad is out of earshot, she will start making comments about his “bad” moments, and it’s really starting to have a negative effect on my visits with them. For instance, they were staying with me for the weekend, and we all went for a hike. As soon as my dad was trailing behind with my boyfriend and talking about sports or whatever, Megan immediately started telling me how she thought he had forgotten about the visit altogether on the day they came.
It’s always right when we are having fun — talking and joking and everything seems okay and almost like it used to be — that she breaks the spell. He will leave the room for whatever reason, and she will then make a point of reminding me how everything is NOT okay. They were here for less than 48 hours this last trip, and she made at least 5-6 comments during that time: about how long it takes to do things, what he’s forgotten recently, how he had trouble hooking up the Sonos speakers, etc.
I assume this is probably some kind of coping mechanism for her, but I’d really like it to stop. Our time together is limited and I want to enjoy it. Obviously, I want to be kept up-to-date on my dad’s condition, and I am always open and available to talk with Megan about things on the phone/text/whatever (they live four hours away), but during visits, I just want to be able to spend time with her and my dad and not be reminded of his condition at every opportunity.
I don’t know what to do. Just accept that she needs someone to vent to? Say something? I dunno. — Daughter of Dad with Alzheimer’s
If you were my friend and we were having this talk in real life instead of through the internet, I’d ask you after every visit you had with your father how it was and how he’s doing, and most importantly, I’d ask how you were doing — how you were coping with this scary life change. I’d talk with you about other things, too, of course, but I’d be there to listen about your dad and whatever thing he did or didn’t do that was out of character and gave you pause and reminded you that the man you’ve always loved and known as your father is beginning to fade and no amount of holding on — no matter how strong your grip — is going to keep him here, with you, exactly the way you want him to be.
Hopefully you have support like that in your life, but it’s possible that your stepmother, Megan, doesn’t. It’s also likely that she does have support in her life, but knows that no one can truly understand what it’s like to see glimpses of your father become someone she doesn’t recognize quite like YOU can. And when one is feeling grief, there’s a sense of relief in feeling understood — in knowing that someone is sharing the same loss. So Megan wants you to understand. She wants you to realize the extent of the loss she’s feeling so that you will share in her sadness.
The question becomes then not so much whether you’re willing to share Megan’s sadness when she shares stories with you during your visits with your dad, but whether you’re willing to share her sadness at all. If you are, you can start setting boundaries around when your stories are shared by being proactive in reaching out to Megan on a regular basis. If you’re willing to set aside time for her to talk, do it. Don’t wait until you see her and your dad again; instead, call her up and ask how she’s feeling and what kind of week your father has been having.
If you don’t want to be bombarded with details about the “bad moments” when you’re trying to enjoy the limited time you have with your dad, make it easier for Megan to unload a little when you aren’t all together. By reaching out to her, you’ll not only strengthen a bond that you yourself may become increasingly dependent on in coming months and years, but you’ll be in a better position to steer the direction of your visits and politely ask Megan to keep discussions about your dad’s condition for when you aren’t trying to enjoy his company.
If you haven’t been quite honest with yourself though, and you aren’t in a position to “be there” for Megan and truly face the reality of your father’s condition through the lens of his wife, it’s time to own up to that. Be honest with yourself and be honest with her. Let her know that you’re working through this at your own pace, and since you have a different relationship with your father than she does, you aren’t processing the same experiences nor coping with your new reality in the same way.
I would, however, urge you start seeing Megan as more than just your dad’s wife. In the battle against Alzheimer’s effect on your family’s life, she’s your main ally. It will behoove you to find a way to fight the battle cohesively, to preserve your father’s legacy and integrity. She’s your partner in this battle. You’ll have more strength together than either of you would independently, so let her rely on you and let her know that you depend on her, too.
Finally, it may help both of you to look into support groups for people affected by Alzheimer’s. You can talk with people outside your family who understand what you’re going through and are further along in the journey and may help prepare you for what’s yet to come.
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How about next time she brings it up say “I’d really like to focus on the positives while we are still able to” or something like that.
I don’t think it’s fair that the LW gets to focus on the positives whenever she’s around her dad leaving her SM to deal with the negatives. It sounds to me like what SM is doing is communicating to the LW that it’s time for her to stop “pretending everything is ok” i.e. asking for her help.
It must be a very sad situation for everyone involved, but there’s no way to fight it: once your parent gets Alzheimer’s you need to become an adult and get in charge, and it seems to me like the SM is pointing this out. It’s not her job to help LW pretend everything is fine, she’s already caring for her dad. It’s LW’s job to step up, face reality and do her part to actually MAKE it right, and shes not going to get there by pretending nothing’s wrong whenever she sees her dad.
I think Megan doesn’t believe LW understands how serious her father’s condition has become. People with early Alzheimer’s often try to hide it and have strategies for seeming more with it than they are, such as speaking from a pre-canned dialog, speaking less but pretending to be listening acutely, quickly shifting from topics which they have forgotten. Alzheimers at this stage is also worse at time of day — late afternoon and after waking from a nap or interrupted night sleep. LW’s joy at seeing her father’s good times may well be interpretted by Megan as denial. Her bringing it up at such times may have several purposes — to correct what she suspects is LW`s false impression of her father’s current capacity, a plea for more support from the family, or a warning that alternate living arrangements for father may be needed sooner than daughter realizes.
One solution, stay with her dad more when they’re together. If the family is on a hike and dad is having a good mental acuity day, why not hang next to him and talk to him, rather than letting him drift back and talk sports with your bf.
My FIL had lots fo ways of pretending to be sharper than he was as he developed Alzheimers. I use that knowledge to recognize when my Dad and sister are fudging.
“to correct what she suspects is LW`s false impression of her father’s current capacity, a plea for more support from the family, or a warning that alternate living arrangements for father may be needed sooner than daughter realizes.”
This is what I got from this, too. I am trying to imagine how terrifying this is for his wife, and perhaps she does not think his daughter completely understands since she doesn’t see the day to day. I hope the LW tries to find more compassion for his wife, and I think a support group is a wonderful idea and a good start to finding more resources to help. I think that the LW has not really felt the impact of what is happening because she does not live with her father.
I don’t know exactly how long she has been the step-mother but I’m also wondering if she’s trying to get the LW’s advice and approval. Maybe she feels like she would be stepping on the LW’s toes if she didn’t involve her every step of the way. Although I also think it’s highly likely that Megan just needs someone to talk to about her struggles. I know it’s not the same thing but when Ethan was sick for about 2 years (still continuing – it’s just not as debilitating) I felt really isolated. Like I didn’t want to make every conversation with my friends and family about our – and specifically Ethan’s – struggles. It felt too depressing. So I ended up never really talking about it. And I felt really alone and like I was living a double life.
I wonder if Megan just wants the LW’s to give her a thumbs up. Someone to tell her she’s doing the right things, someone to bounce ideas off of, and someone to share in the devastation of losing this person.
I just wanted to jump on and third this point that Megan is likely trying to correct what she sees as LW’s false impression about her father’s condition.
My maternal grandmother is 86 and has Alzheimer’s to the point where she can no longer speak in sentences or do any activity unassisted (eating, dressing, bathing, using the bathroom). She’s been living with my aunt for the past 5 years and it is SO SO hard for her to both witness my grandmother’s decline on a daily basis and to be the primary caregiver. When my grandmother first began to decline it was incredibly frustrating to hear/watch the reactions of family members (including my mother) who seemed to think what was going on wasn’t as serious/draining as it was (and is). It’s a delicate balance. It’s possible the other people in Megan’s life are not as understanding as you are (and it’s difficult for ppl to understand/process), and she’s projecting that worry onto you. In the beginning, my mother and her siblings kept insisting my grandmother participate in activities that were too confusing for her, that my aunt was overreacting about the diagnosis, that my aunt stop talking about what was going on, etc. There were a lot of us who were understanding and helpful, but the people who don’t get it really cast a shadow over the people who do. Really my aunt just needed support. She was being realistic about what would (and now has) eventually happen.
But I know only too well it’s such a tough spot to be in, and you’ve got your own grief going on over this, LW. It’s so heartbreaking. Big hugs to you and yours. Try to be as supportive as you can, but make sure you take care of yourself! I’d recommend support groups and Alzheimer walks and charities. Being around other people who get what you’re going through, and can help you prepare for what’s ahead, is often the only way to feel like you’re not being completely engulfed by the disease. Again. LOTS of hugs to you. I wish I could give you better advice, but I think Wendy did a pretty damn good job. 🙂
I agree with this so much. I wonder if the LW and Megan have ever had conversations about who will make certain decisions as Dad’s condition deteriorates? Will the LW be OK with Megan making the decision to move him into a home when she can’t care for his anymore – since the burden seems to be entirely on Megan to care for him. I know friends whose families have been in huge denial over dementia or alzheimers and it was crazy difficult to make treatment decisions when half the family didn’t acknowledge the extent of the problem.
Seems like Megan is trying to make sure that if/when the time comes the LW can’t come back at her with a “but Dad is doing so well, what is wrong with you?” kinda attitude. Also seems like the LW wants to enjoy her dad, and let Megan deal with the day to day but doesn’t realize she also has a role to play in caring for him. I mean what if they get divorced? That does happen, especially when dealing with a condition where people can deteriorate for decades, and it seems like the LW just wants good ol’ dad and not deal with the serious issues. I can’t imagine how frustrating that would be for Megan if she has no other support or family.
“It’s always right when we are having fun — talking and joking and everything seems okay and almost like it used to be — that she breaks the spell.”
She’s not trying to break the spell, you are trying to live in a fun fantasy and she won’t let you. Things are not like it used to be, and I think the LW needs to stop pretending they are.
The “break the spell” comment was not in my original letter.
Maybe they both should also try to involve Dad in these decisions before he is too far gone to assist.
That is an EXCELLENT point. By the time most of my family realized how well my grandmother was hiding her difficulties (and ppl w Alzheimer’s, especially in the beginning, are PROS at this) she couldn’t really give us much feedback. Oh Lord I forgot all about that drama that went on when my aunt was trying to get power of attorney…
yes it is important, because sadly eventually they become people who you don’t recognize and do/say things you would never have expected and then it’s too late to talk about it rationally. my great grandmother was convinced my grandmother was holding her hostage (she was no longer able to walk but was convinced she was tied down). It was so hard to explain to my Aunt that we weren’t trying to make her miserable but, she could no longer do the things she wanted to. It took having her come up for an overnight visit for her to see what reality was really like. She changed her tune and understood why we needed to get a private nurse to come in and help.
The one thing she never forgot how to do was pick crabs, it was so funny, up until the end she could still pick a crab quicker than the rest of us!
“It took having her come up for an overnight visit for her to see what reality was really like.”
I think this is so important. So often it is the family members furthest away or not dealing directly with the day to day try to insert themselves and overrule those that are the daily caregivers, and they need to put themselves in the caregivers shoes to finally accept someone’s condition (denial is a LONG river in Egypt) or at least the practical realities of the daily grind. It’s a lot easier to say you want X to stay at home when you aren’t the one dressing, bathing and taking X to the bathroom. Someone else referenced below that the daily caregiver should be given greater weigh, and I agree!
Yeah, my thinking was exactly along the same line Oldie’s. People can so easily just be in denial about things like this — it could be the the Stepmother fears that this is the case. I mean, one thing that blew me away is that he is STILL working… as an ENGINEER? Isn’t that kind of a highly technical sort of gig where mistakes can be disastrous? I mean, it’s not like waiting tables, or data entry… If you are off on a spec, um, people can die… Just a thought.
I think the LW doesn’t seem to fully appreciate the toll that this is taking on the stepmother.
I mean, look, everyday, this poor woman deals with this and has it thrown into her face each and every time he has a bad moment. She is right there, no denial, dealing with it. Good thing she doesn’t just try to gloss over these moments so she can enjoy the time left she has with her husband. Think about that. No, seriously, think about that. Obviously, the stepmother is DESPERATE for comfort and support — and here we have a LW whining about how the sheer fact that reality is intruding onto the fantasy of their visits struck me as, well, remarkably childish.
Grow up. No, seriously. It sucks, and you have my sympathy, but it’s time to pull on your big girl panties and stop acting like you are all of eight years old. Honestly, I don’t even get why the Stepmothers anecdotes are even THAT upsetting at this point as the LW herself KNOWS that he has more and more of these bad days. If she claims to not have her head in the sand, then it’s just the reality of the situation. And it is something that DOES need to be discussed.
The Stepmother could also be acting like this as a misguided way of reminding the LW to enjoy the good days. And that they are becoming more and more of a rarity.
I guess the LW can ask her if she could please wait to speak more frankly about what’s REALLY been going on before and after your visits and simply say that you just want to be able to more fully enjoy your dad’s visits. Also, ask if she NEEDS more day to day support. There are caregiver networks and alzheimer support groups. Hopefully, she will seek out some of these services…
Probably my favorite comment of yours ever. You bring up a very good point that the stepmother could be reminding LW to value the good times while they still exist. That’s probably not the only purpose of her comments, but I’m sure it’s something Megan is definitely considering.
Definitely agree. It may be that the LW has said or done things that imply she doesn’t understand the progression of his illness OR Megan just sees that the LW often observes her father on his good days and wants her to know there’s more to the story.
I know the LW seems to think that Megan is ruining the good times, and maybe there IS a better time to talk about these things. But I also get the impression that they haven’t actually sat down to talk about the serious matters or that Megan doesn’t feel like she has another opportunity.
my first reaction is that you have not come to terms with what this illness means for your father, for yourself, or for your family, and that you would rather keep your head in the sand and pretend like everything is ok while everything is going ok for that moment/hour/visit/whatever. i know that you say you have come to terms with it, but i really feel like if that was the case, you would be ready to talk and hear about the bad stuff.
you NEED to be hearing these things, as bad as it is. you need to be in the loop and following the whole process and being a part of it, thats how it works. if you are in the family unit that is going to be tracking his progess, giving him medication, making decisions for him like putting him in a home, ect, you need to be informed and be living in the real world where he has bad times with the good times. and, you can still enjoy the good moments while knowing full well how bad the other moments are, if that makes sense. i think that it would make them even more precious, anyway.
Wendy, that was such wonderful advice. This kind of response is exactly why I come back and read you everyday. Your compassion and empathy for your readers is felt and I just wanted to let you know that. Also, I love it when you can tap into the bitchy side when there’s an LW that really needs a kick in the pants. Thanks.
LW – this isn’t easy for you nor for Meagan. I hope you both are able to find strong support for the tough times ahead.
What a sweet comment, thank you!
I can’t help it — Is “tap[ping] into the bitchy side” like “steppin’ to the bad side”??
(and yes, I had to look up the movie Dreamgirls to remember what the line was as it was circling in my head, please resume your commenting day)
Wendy’s advice is so, so good on this one. When I think of one of my parents going through Alzheimers like my grandmother did I get really sad. I want to be able to spend my time with them, not what they’d turn into after severe memory loss, but THEM. My best friend lost her mother at age 25 and I think the worst part for her was the fact that her personality drastically changed in the months before her death. Losing a parent in any way is, of course, awful, but having to watch everything you knew about them fade away is heartbreaking.
The thing is, when I think about my fiance one day going through that my heart stops. I love my parents and it’s hard to imagine my world without them, but my fiance? He’s my life, my partner, my everything. I want to spend my whole life with him and to lose his personality slowly, to watch him fade away over the course of endless peaks and valleys who’s overall trend is ever downward, I’m not sure how I’d survive that. I expect to one day lose my parents, but to lose a partner that way sounds so much worse.
I’m not saying that Megan’s grief is any more valid than yours, but she sounds like an amazing woman for holding up as well as she is. You’re going to have needs when it comes to processing your grief, but it’s important to remember that so will she. Wendy gives great advice for how to negotiate things so that you both get the support that you’ll need through this difficult time.
This was a very compassionate response. And I very much agree.
Seconded, very great advice and very true for me as well. I can’t imagine what Megan is going through, even after seeing other family member’s in similar situations.
WWS. I also think support or outreach groups may be beneficial for your stepmother and/or yourself. If your stepmother is interested in speaking to others in that type of forum, it may allow for the release of the negative thoughts/occurrences (and subsequently lessen them in the time you all are together). Obtaining some support for yourself may put you in touch with others who have been in similar scenarios (alongside a stepparent or parent caregiver). This letter is timely as I walked in the Alzheimer’s Association walk yesterday and learned about some of their resources: http://www.alz.org/.
I think this happens with a lot of caregivers, especially when someone doesn’t have a lot of support. It can also be frustrating to be the one there during the really bad times and have other people only see the good. I think it makes you feel like the other people don’t understand, and to a certain extend make you angry that they don’t have to deal with those issues.
My Grandmother took care of her Mother after she was diagnosed with an inoperable brain tumor. There were some days where she was great. And my Grandmother always made sure she had extra rest and was really ready for when my Grandmother’s sister and her sister’s family would visit. They had a hard time really dealing with her diagnosis and often left and would say things like she seems great, I can’t believe she has a tumor, etc. My Grandmother would often remind them that it wasn’t always like that and her bad days/moments outweighed the good.
I’m sure they were frustrated by my Grandmother’s comments but, just seeing them make comments to her about how great she was often kind of ticked me off too. I was happy to spend the good moments with her when she recognized me and would laugh at a tv show or just talk. But, it is frustrating to have people not really understand how bad it is. When my Great Grandmother passed away I don’t think my Grandmother’s sister and her family were as prepared because they just couldn’t deal with the idea that she was that bad off. And they didn’t see the really bad days because they just weren’t there. They also didn’t understand why my Grandmother needed hospice and nurses to come and help because they didn’t get how bad it was.
And I very much agree that support groups are a great resource. I wish I had been able to convince my Grandmother to go. I went a few times and just hearing that other people knew what it was like to be in that situation and not have to have anything explained was very helpful. Even if you aren’t able to support Megan as much as she may need, it might be great if you could even point her in the direction of a support group. It might not seem like a lot but she may not have the extra time right now to do it for herself.
Agree so hard with hating the “She seems so healthy!” folks just a little. First off, when someone the sick person loves and doesn’t see often comes in, that adrenaline spike or endorphin spike or whatever it is acts like a quick, temporary charge. It can regress some of the symptoms so that the patient actually *is* better, temporarily. I saw my grandmother do it with my uncle, my cousins, even me. My grandmother started this bit with my mom where she would say something really mean, and if my mom got angry, my grandmother would mock her by repeating back exactly what she said in this really high, singsong voice. But she wouldn’t do it to anyone else. The last Christmas she spent in her house, the entire family came and stayed with her, and after a day or two, she got really grouchy and started regressing. And my uncle and she got into it, and she mocked him like she’d been doing to my mom for like a year. My mom had told him about it, and he never outright said my mom was lying, but he was so surprised that it had happened just like my mom had said that he called her – we were out shopping – and told her, “I just got mocked!”
The problem with that whole “she seems okay to me” bit is that it implies two possibilities. One, that the primary caregiver is making it up or exaggerating. And being dismissive is so very helpful. Two, that the caregiver is the cause of whatever that visitor isn’t seeing. Essentially, “Hey, that constant caregiving you’ve got going on? You’re doing it wrong.” Which is both untrue and hurtful.
WWS
WSSPS.
My grandpa was diagnosed with Alzheimer’s about 2 years ago. I was very close with him – he taught me so much as a kid. He was the smartest man I knew – PhD in chemical and thermodynamic engineering, always writing textbooks. My grandma and my mom often talk about the bad times with me even though I’m only home from university a handful of times a year. Every time they talk about those times I want to put my hands over my ears and scream STOP. All it does is make me cry remembering him the way he was.
I don’t do that though. I just listen. I don’t ever really say anything back because I don’t know what to say. I know my method isn’t perfect – Wendy’s advice is far better than what I do -but I can’t bring myself to say anything back. And the reason is that I don’t want to hear about the bad times. But I know that my grandma lives with them every day and needs someone to talk to about them and I would never consider asking her to stop.
I don’t think Megan means to bring you down. I think she just wants some solidarity and compassion and this is the way she’s reaching out for it.
WWS.
Also: Being a caregiver is an extremely tough job. And in Megan´s case it´s made more stressful by the nature of the disease, seeing her husband change, and knowing what´s to come. As hard as it is to lose your SO at all, I´m sure losing him slowly, seeing him turn into a virtual stranger must be even harder.
LW would it be possible for you and other family members to give Megan a day off from time to time? Either by you and others rotating looking after your dad, or all chipping in for a nurse or companion? Burn out is a likely scenario in these cases.
I know it must be hard hearing about all the bad things, but I´m positive Megan needs to get it off her chest, and tell you exactly what´s going on. Like Oldie said above, maybe Megan doesn´t think you realize the actual condition your dad is in.
And like Wendy and others have said, please look into support groups, and maybe even some type of day program for your father, if he´s up to it. There are centers that organize group activities for patients with different cognitive disorders, and it might be good for your father.
I was wondering this too. Maybe Megan needs a day off. If not once a week, every few weeks or something.
LW, you said you’re only four hours away. In the grand scheme of things, visiting your dad once a month to give Megan a little break wouldn’t be that difficult. You could even leave Saturday morning and come back Sunday morning. This time difference is definitely doable.
Sorry, I thought I read that you lived four hours away then I couldn’t find it when I re-read. Still, if you live fairly close, I think you should consider vistiting more.
Wanting to be kept up to date and being accessible via Facebook etc. is not the same as actively assuming responsibility for monitoring your dad’s disease as it progresses – hopefully very slowly. You said your step mom breaks the spell when you are together having a good time – but should you be under a spell at all? Shouldn’t you be fully aware of what your dad is going through and what his wife is going through? I’m sorry that this is the reality that they face now – but it is your reality too. There is nothing wrong with the truth and a lot of things wrong with avoiding it – though of course anyone can imagine why you would want to. I think Wendy’s suggestion of being more proactive with your contact and support of your dad and his wife is excellent and you making the effort to get weekly/daily updates would help take the edge off of visits since you would already know the things your step mom is telling you at what you view as inopportune times. I get why it is in your (short-term) interest to pretend for a moment… but pretending is not a luxury your step mom has – or your dad either. I’m sorry that you are going through this at all and I wish the best for your dad’s health going forward.
My mom was diagnosed with Parkinson’s disease almost a year and a half ago now. It was devastating to me, despite the fact that she’s still overall very healthy. Admittedly, there are times when I stick my head in the sand because I just don’t want to think about it. The news was also devastating to my dad and he coped with it by putting a TON of energy into planning for what was going to happen down the future — as in, he was constantly talking about money, when they were going to move, etc. etc. for MONTHS. It was very draining to my mom and to my entire family, but that was my dad’s way of coping.
It sounds like Megan’s coping mechanism is talking about it with you. It sounds like her intentions are very good and she really just wants to keep you in the loop. I know it’s hard, but try not to push her away. She’s struggling too and if you two lean on each other it will help you both to get through this. Maybe find a balance — say, you take time to talk on the phone with her once in a while so she has an outlet to talk about the bad days. That way, when you’re visiting them or they’re visiting you the focus can be on the positive.
Megan sounds like she has a classic case of “Caregiver Burnout” or stress. And it is only going to get worse for her as the Alzheimers progresses. Perhaps you could sit and talk to her about her plan for as things get worse. Getting someone to come in for a few hours per day to give her a break once he can no longer work, perhaps eventually an Alzheimers facility when she can no longer care for him. In the meantime, try and find a support group for spouses of those with Alzheimers that she may want to attend which would be a safe place for her to vent. It may be that she is very isolated in her life and I do feel that you need to be a little more compassionate.
I love Wendy’s response here. I also agree with the commenter who said that she reads because she enjoys how compassionate Wendy is when the LW needs it. So true!
LW- Megan can’t get away from the bad if she wants to- she’s going to see the worst of it. She can’t have a good day with him and shut out the bad like you can. I know what you are going through is hard but what Megan is seeing is harder. Either take Wendy’s advice about calling and getting the bad news more frequently so that you can enjoy the good times without Megan telling you all about them or take Oldie’s advice and stay put with your father when they visit. Either way, realize that at the end of the visit, you can go home and forget about your father’s illness for a few minutes where Megan doesn’t have that luxury.
I know you dont want to accept it quite yet, but you need to listen to Megan. You need to know what’s going on, and how he’s progressing – otherwise you’ll go for a visit, he’ll be a lot worse, and you’ll be upset that she didnt tell you.
Megan needs support, just like you do, but think of how you would feel if this was happening to YOUR spouse. the person that was supposed to take care of you if something happens. she doesnt have that anymore.
and i do think you have your head in the sand here. you need to pull it out and start living in the ‘now’. you get to live in this dream when you go to visit like it’s the way it’s always been for you. dad is great, everything’s peachy. Megan however, does not. she lives with it everyday.
Agreed. Wanting to ignore it, living four hours away, and “focusing on the positives while you still have it” is the definition of putting your head in the sand about it…
It sucks, it really does, my heart goes out to this LW. Having me, a spouse, or my parents suffer alzheimers is one of my biggest fears in life. I suffered through it slightly with my great-grandmother and that was tough…she didn’t even have placement for me…thought I was my uncle for about the last year of her life… I can’t imagine having to deal with it for someone that I know even more personally like the aforementioned relationships.
Wow, for so many reasons (the wisdom, compassion, and hopefully effectiveness!) this may be the best Dear Wendy response ever!
WAPS! This is my favorite response that Wendy has ever written. It’s a wonderful way to start the day. Thanks Wendy!
Thank you! Some responses come easy to me and I bang them out in a half hour. This one took days, and a couple of re-writes, so I’m glad it’s being received well. Hope the LW gets something out of it too.
I agree. It warmed my little heart. Sometimes I try to predict what Wendy will say before I read her response and this time it was so much better than anything I could have even tried to guess.
Yes! This reply is so compassionate, you can almost feel it! WWS! and WAPS!
I think this might be a case of people coping differently. My fiance’s grandmother is in the early stages of dementia and every member of the family is dealing with it very differently. His sister always focuses on the negative and brings up her “bad” moments, his dad ignors it almost completely and refuses to talk about it, my fiance focuses on all the positive and basically in denial. LW I think that perhaps you and Megan are dealing with your fathers condition differently. I think you should take the other commentors suggestions about talking with Megan and giving her a day off here and there are great.
Also, I’m sure you’ve already had the thought and I don’t want to see as though I am judging- but engineering is a feild with a lot of responsibility and I want to encourage your family to proceed with caution as far as him continuing to work. I’m not sure what kind of engineering your father does but being a person who works in contrustion and deals with engineers regularly- I just wanted to offer a gentle reminder that engineering is a serious position and mistakes could be devistating.
Best of wishes to you and your family.
Excellent point about the work. It can be incredibly hard for someone to stop working, but sometimes it´s necessary.
Glad I was able to say that in a way that at least one person took it right! I was so worried about wording it poorly.
I had actually thought the same thing while reading, then I got carried away about the caregiver burn out while I was commenting. I´m glad someone brought it up. Maybe there are some things he can do at work that aren´t so potentially risky/dangerous.
I so agree with this, JK and GatorGirl. The head of my department for most of my time in grad school was diagnosed with Alzheimer’s my last year in the program, and it was heartbreaking to watch him lose his grip. His family knew long before anyone in the department got the official diagnosis, and so for a few years he just looked incompetent before some of the genuine cracks started showing. He did some financial damage, and the kids in his classes would listen to the same lecture over and over for at least a week. There was a lot of loyalty to him, so if the family had communicated to the department better, probably something could have been worked out before he was so far gone there was no choice but to declare him “professor emeritus” or some other honorary bullshit title and shuffle him off to an office in the back of the building. If he’d been allowed to retire with some dignity while he was still aware of what was happening to him, I can’t help but feel the whole thing would have been less awful for him. As it is, he’s aware that no one listens to him or allows him to play an active role, but the time has passed when they why of it can be explained. He feels betrayed, and he was essentially fired as department chair, whereas if his family had been up-front with him and with us, it would never have had to come to the point where he was forcibly ousted.
This is true. Wouldn’t want to have a bridge come tumbling down. I was struck by the “He is still working part-time as an engineer, but he did have his driver’s license taken away.” I distinctly remember how much of his subject knowledge my FIL had lost by the time that he was first told he should not be driving. At least here, someone has to be fairly far along in Alzheimer’s disability before they are forbidden to drive. Hard to imagine being in that state and functioning remotely adequately as an engineer.
The nature of his illness is that at this time, it primarily affects his visual/spatial abilities (hence the difficulty driving), not knowledge retrieval.
I hope you’re not taking offense to my original comment, because I really meant it out of a place of caring about your family (and also anyone affected by his work). It’s great that you’re already taking his capabilities into consideration as far as his career and I encourage you to continue to do so. As you point out, it is an ever changing illness and what works today might not work tomorrow.
The thing about Alzheimer’s is, there’s not a problem until there is one. That is to say, you won’t have any idea he’s started having problems with his work until he’s made a massive mistake or consistently the same mistake over and over. And as fondly as his company may feel about him, they can’t tell a client, “Oh, just overlook that. The guy that’s working on it is an Alzheimer’s patient.”
Maybe start talking to him now about retiring, or at least scaling back. Better to let him feel like it’s his decision than to get to the point where his company has to let him go and gives him no say.
I agree with this and what others have said about him still working as an engineer. I’m hoping that he’s helping more with strategy, than actual technical work.
I work for an extremely large engineering firm, and there are doers and there are sellers. For the sake of safety, I’m hoping this guy is helping win work, strategizing on proposals, etc. Relationships are super important in winning work too, maybe he has some long standing relationships he’s helping his firm continue. I dunno?
I’m thinking maybe Megan and LW are from different cultures. Us in the south talk exactly like Megan to anyone and everyone listening. I swear, I worked in retail and at the bank and I know how complete strangers will tell you about things if you listen. I heard so many stories about people I could care less about. Most of them I’ve forgotten.
Maybe LW comes from a place where people don’t talk and complain to others, much less members of the family?
You’re a fellow Southerner, sarolabelle? Where are you from? There are so few of us on DW!
My dad was in a similiar situation to yours years ago. My grandmother had alzheimers and my grandfather was her full-time caregiver, even retiring early so that he could take care of her. My dad was 5 hours away, working full-time with 3 young kids, so the times he could go visit were limited. My dad also recently had to help out his brother’s wife when his brother had a mental breakdown. My uncle lives on the other side of the country, so my dad being able to visit was very rare.
The best things I can tell you are this:
1. Set aside specific times to listen by phone. It will help Megan work through her feelings as she lives day in and day out with someone who is slowly losing himself. It will also probably help cut back on the comments since she’ll know you’re listening.
2. Help Megan plan for what is inevitable. Your dad is only going to be able to work for so long. What happens when Megan doesn’t get that slight repreive? What happens when Megan simply can’t take care of him anymore? An alzheimer’s patient when they get to the more advance stages needs to be watched 24/7. My grandfather fell asleep from exhaustion one day and my grandmother wandered out the front door that he had forgotten to lock just that once. She was lucky and ended up being found by a police officer who knew them. However, it made my grandfather realize that he needed help and my grandmother had to be put into a home after that. So help Megan find someone who can relieve her. Maybe there’s a neighbor or friend who knows them well that can help your father? When you go to visit, maybe give Megan time to go completely off on her own? Help plan out a facility where your father can eventually go.
3. Lastly, do what you’re doing. Enjoy the time you have with him. Call him up to remind him of who you are. Let him ramble on. Spend all the time you can with him. Except at the very end, my grandmother knew who my dad was after a little prompting because he did this.
I know none of this is easy. I watched my father agonize when he visited my grandmother and have her not recognize him at first. I heard him on the phone for hours helping my aunt plan out my uncle’s care and be a sounding board for her as well as talking to my uncle on the phone only to end up at the same point in the conversation as where they started. It’s hard to face that kind of reality. Unfortunately, it’s necessary and will only become more so as time goes on. I’m sorry 🙁
It’s incredibly hard to watch someone you love suffer from this disease. Their bodies look completely normal but who they were is no longer inside. At least the his wife willing to let you know what’s going on. She’s suffering also and perhaps you can each gain the strength to face the future.
LW, my dad died of Alzheimers 12 years ago, and your letter has me getting choked up at my desk at work. Wendy’s response was perfect – compassionate and practical. A couple things though – I feel for your stepmother here. She lives with him day in and day out, and every time he forgets something, or can’t hook up the DVD player, I guarantee it breaks her heart. I suspect that for her, there isn’t a spell, it’s not “normal” for her, ever. If she doesn’t reach out to you, reach out to her. Determine if she has a support group, or a therapist. Is she his only caretaker? Can he be left alone? It is so very very hard to take care of a person with Alzheimers. It can get really bad – my dad (the sweetest gentlest man I’ve ever known) went through violent, angry phases. I strongly feel even when the disease progresses, there are still sparks of the person we know. With my dad, the anger passed and he became sweet again. He also totally staged a breakout from his nursing home. Organized an escape, 3 80+ year old men packed their pillowcases, helped each other hop the fence, and made it a couple miles before they were busted. At that point, he didn’t know my name, but I was somehow happy that he got that moment of freedom. You are right to enjoy this time with him and hold it as close to your heart as you can. If you, and she, aren’t seeing a therapist, or going to a support group, start. And have as much compassion as possible for the person who is with him the most.
I’m very sorry for your loss, and I’m sure the LW could benefit from support from people who have lived through this experience.
I really love the story about your Dad breaking out! Sounds like it might have been stressful at the time but what a thing to be remembered for! Thanks for sharing that.
Thanks Nadine!
I’m sorry about your dad, Taylor. Alzheimers is in my family too. My mom has it on both sides of her family – her mother and her paternal aunt died after several years of Alzheimers disease. I was too little to remember any of it, but my mom always says how horrible it was for them (and of course for her to see them go through it).
I remember visiting my grandmother in the nursing home before she died. I was maybe 7 or 8. My grandmother thought I was my mother as a little girl and kept calling me her name. I also remember walking through the hallways of the nursing home and feeling scared – there were so many old, sickly people everywhere; it scared me for some reason. I remember passing an old man sitting in a wheelchair. He wasn’t moving at all and I don’t even think had his eyes open. Then all of a sudden he jerked his arm out and tried to grab me. It screamed and hid behind my mother. But then mother did something and the image will stay with me forever: she stopped and grabbed the old man’s outreached hand and just stood there for several minutes, holding and petting his arm. And she looked at me and said “he just wants to be held a little – we all need to be held a little sometimes.” …
I guess this was neither here nor there but the theme made me remember that moment in the nursing home.
You just made me cry, AP.
me too, and your Mom sounds like a pretty awesome lady, AP.
Me three
Thanks! She’s good people.
AP, I love your mom! What a beautiful thing to do.
Yep, runs in my family too. My dad and all 5 of his siblings had it. They were such a vibrant group of people, it just sucked. So, I eat a lot of turmeric and hope that in 40 years they’ll have a handle on it. On a much less poignant note, I had an 80 year old woman feel me up in the nursing home. I was about 20, not a kid, so on my end it was just a little awkward. No point to that, just getting some Alzheimers stories off my chest (so to speak).
LW, it’s so easy to not want to hear the hard things. I lost my mother to cancer two years ago. Both my parents intentionally kept a lot of the hard things from me, and the results were damaging. I didn’t have a good handle on how sick my mother was until very shortly before her death. I know it’s hard now, but it’s better to know than to not know.
This isn’t my first time dealing with a parent with a terminal illness. When my mom was dying with cancer (10 yrs ago) there were many days when she seemed perfectly fine. But I still knew the score. I was just grateful, and I’m still grateful, that our last months together as a family weren’t all about talking about, and focusing on, her illness. When I say I don’t want to constantly talk about it, it’s not that I am being ignorant of what will happen. It’s the exact opposite- I realize time is ticking no matter what we do. What I am trying to figure out is how to balance providing support for my dad’s wife while also being able to have quality visits with my dad while I still can.
That’s rough LW. Does your dad’s wife have a network? Social, family in the area, support groups? Talking to her more (outside of the time with your dad) is a good suggestion, but having other people will help. You can support her by helping her build that network. There may be things down the road you won’t be the person she would be comfortable telling. I was still a teenager when my dad got sick, and my sister bore the brunt of my mom’s confidences – and there were some ugly ones during the middle phase of the disease.
First, I’m sorry LW that you’re dealing with this again. I can’t imagine the pain you have to have gone through with your Mother and now your Father.
I’m going to guess that based on a 10 year time gap that how you’re being approached with the illnesses is in itself different. Parents as a unit tend to choose what they do and don’t share with their children. As a now adult you’re being treated more like a decision maker, because you are. Now that you’re an adult and your Father’s wife isn’t your Mother things are different. I think personally like others have mentioned above she might be reaching out to you and letting you know the changes because she’s informing you of what is going on. I think that more direct, scheduled contact would help make the time you’re with your Dad different. I would suggest like Wendy said reaching out to her when you’re not all together.
And help her find the network that Taylor has mentioned. She’s probably overwhelmed and scared and if she’s dealing with the day to day issues may have not thought to reach out to support groups for help.
I’m sorry that this is happening to your family, but must say I am having trouble understanding how setting boundaries around Megan’s daily devastation at the sad diminishment of her husband/your father is good or even possible. It skirts a little too close to the line of putting your comfort ahead of her pain. Unwelcome news is rarely delivered to us exactly when and where we would like it to be. As the primary caregiver, Megan is the one to be given the most leeway and understanding in this situation since hers is the biggest burden.
I understand the LW’s position. My family had to deal with my grandparents’ Alzheimers in the past and it wasn’t easy. It was like seeing a beautiful mosaic be taken apart tile by tile. However, we had to face the truth in order to protect their well-being and maintain our sanity. Talking about the bad is never wanted but it is necessary to completely process what’s happening and move forward.
But for you, you need to see your stepmother as a friend. She cares about your grandfather but she has needs and I think Wendy put it so well in her response by making time for it.
This was a great response and quite possibly my favorite Wendy letter.
LW, I would like to kindly, warmly, lovingly say that you need to woman up and help Megan. She sounds overwhelmed and like she needs help, which is completely understandable. I’d start calling her once or twice a week to let her vent, but also to get to know her better and be a friend to her. I’d also consider the possibility of hiring part-time help or clearing your schedule to be there much more often. This is not just happening to her, it’s happening to you too. You absolutely do have your head in the sand, and asking Megan to stop getting support from you because it’s a “major downer” is not nice.
It really sucks that your dad has Alzheimer’s, and I’m really sorry about that. But pretending it’s not so bad isn’t going to change anything. By all means preserve and continue to make good memories; but also be aware that he is going to get worse, and that you need to be prepared for that. And not just emotionally.
There was a very ugly episode in my family when it came time to deal with my grandfather’s Alzheimer’s care: he wanted to stay at home, one of my aunts wanted him to stay at home. Everyone else, my grandmother included, wanted him to be somewhere else, where the onus was not on my grandmother to be taking care of him 24/7, and where he could get the therapy he needed to slow down the disease. In the end, he went to a nursing home where he’s alive 8 years later, and my aunt hasn’t spoken to anyone in my family since then.
This would all have been so much easier if we had discussed with my grandfather, before he was too far gone to understand his options, what he wanted. Megan might be trying to make you understand that your dad is sick, and he’s going to get worse, and it needs to be dealt with. Making a plan for the future, with both Megan and your dad, may make her feel better about the whole thing. Does he want to stay at home forever? Does he understand what that will do to Megan? At what point is he willing to go to a home? At what point does he want to stop receiving medical treatment? VERY IMPORTANTLY, who will be his medical proxy and who will have power of attorney over him, and at what point does he want this to happen? It’s possible that once these issues have been sorted out Megan will be less on edge about his Alzheimer’s every time you see each other, although of course she will still want to talk about it too. Best of luck LW.
Along with all of the wonderful ideas and suggestions the commentary has provided, I might also suggest that you work, either by yourself or with a therapist or support group, on adjusting the way that you deal with the information coming at you. You mention his wife being a downer, or the fact that you want to stay positive, which is understandable. But over time, you should be able to start taking in and processing the duality of the situation all at once. You can have a fun day out with them, but also be able to listen if she drops a comment without it bringing you down completely. I know you say you are already well aware of what’s coming, but this aspect of your letter makes me think that you’re not completely dealing with it, or perhaps this is your coping mechanism, to carry on as though things are fine despite the gravity of it all.
Work on having compassion for yourself and your father and his wife. Sometimes people cope best by trying to avoid saying anything negative. That plan won’t work here because you and Megan are going to be even more closely involved with each other over time in handling his care, and she clearly can’t keep it all from you. It sounds like you are still processing your grief over the subject and it might help to work through that with a therapist so you can be present for all involved.
As someone who has been there too, I am really hoping for all the best for you, LW.
Also, this comment stood out to me: “because, really, what else can you do? ”
Do not feel as though there is nothing you can do, LW. You can attend groups, therapy, check Meetup for support networks in your area, offer to help Megan set up respite care when it is needed, discuss future treatment options with her, take more visits to their home if you can, stay weekends with them so you can get a better idea of how things are progressing with your father, attend doctor visits with them if they are comfortable with that, talk to your dad as much as you can on the phone and in person so you don’t have to feel that each visit is so sparse. Just be as present and involved as possible and I think Megan will ease up on the comments during fun outings, because then she will know you have the full picture of what is happening, and are as invested as she is.
It sounds like the root of your problem with Megan is that you just have different ways of coping during painful/stressful situations. Reading your comment above, it sounds like you deal internally for the most part, and you’d prefer not to dwell on what worries or hurts you in conversation–not because you’re in denial, but because talking about it constantly is like salting a wound that you’re already very much aware of. Megan, on the other hand, sounds like someone who vocalizes her worries as a way of coping and tends to assume that someone who takes your approach is either in denial or just unaware of how serious things are. My mother and I have been clashing over everyday problems for years thanks to this same difference (I’m an internal coper, she’s a verbal one), and I can only imagine how that could be maginified by something as heartbreaking as a loved one with Alzheimer’s. The best way to ease the frustration all around may be to just be aware of the difference. Lend a sympathetic ear and help wherever you can, but if Megan’s commentary gets to be too much just remind her that you know how serious your father’s illness is but you’d like to enjoy a good day with him while that’s still possible. I think taking Wendy’s suggestion that you talk to Megan more between visits would help as well, since it would give Megan more of an opportunity to get things off her chest without being the downer during a visit, and you’d probably be less upset hearing her comments spread out during phone calls than all at once while you’re trying to enjoy some time with your dad.
Yes yes yes yes yes. Thank you.
LW, this is the saddest of sad situations. I hate Alzheimer’s so much. I have a grandmother who is so ravaged by it, she’s forgotten how to walk or feed herself or even talk. This disease fucking sucks, and I hate that anyone has to endure it.
I understand what you say in your letter and in your comments that you don’t want to be consumed by this, or for it to become the only thing that remains of your relationship with your dad. Megan gets to have good days with him when she doesn’t have to constantly talk about his disease. But at the same time, she doesn’t have the luxury of choosing whether or not she’s going to deal with his bad days. My mom was the primary caregiver for my grandmother when she still lived at home, and when she moved to a full-time care facility, she was the contact person and also the one who was there the most. My aunt would come visit once a month or less, and she would pull my mother aside to tell her how badly my grandmother seemed to be doing. She meant well, but to my mom it felt like she was being accused of dropping the ball. My uncle would come in a little more often, but he would tell my mom that my grandmother seemed to be doing so well. He was so deeply in denial – and also, my uncle is the favorite child, so my grandmother would perk up more when he was around – but what it felt like to my mom was that her fears and worries were being completely dismissed. It’s so hard, especially with something like Alzheimer’s, which seems to tease loved ones with the illusion that the victim is improving, to be the one on the outside because so much of what you have to go by are observations from a third party, and it’s also hard to be the one living with it, because the visitor only has a small sample of what it’s really like, so you have a deep need to tell them how it really is.
Aside from giving Megan time off, which is really a good idea, maybe set aside time each visit where you let her spill it all to you. Maybe combine the two – your husband could stay with your dad, perhaps, and take Megan out for a nice meal, or a spa day, or some kind of treat, and then let her talk it out.
And some part of this is, no, you’re not a counselor or a support group, and you’re not trained to handle this in a way that’s going to be fully helpful to Megan. She may be one of those people who, like my aunt, needs to let you know how bad it really is – and maybe exaggerate some, MAYBE – and so, even if you were caring for your dad full-time, you still wouldn’t need to talk about how bad it is as much as he does. That’s okay. You do need to listen some – she’s your best source on how your dad is really doing, after all – but then I also think it’s fair to suggest that you aren’t handling this information all that well, and that you’re not the most helpful person to speak to, and then suggest some sort of support group or therapy. But then she needs some time where she can leave your dad, and maybe you’ll need to commit to more time spent with them. And you get the time with your dad where you’re not constantly barraged with the negative.
The bottom line is, she needs some help from you if she’s going to be easier to be around. And you would also benefit from some therapy or support. Ultimately, you will probably have to hear about your dad’s bad days more than you want – but then, you get to go home, whereas home for her has become something new and very, very scary. But maybe you’ll hear it a little less than you have been. Be aware, though, if she’s resistant to any of these changes, that doesn’t let you off the hook for hearing her concerns.
Can’t imagine. When my dad was dying, my whole family was in denial, my stepmother worst of all, and everyone thought he was doing just fantastic. I found MYSELF in the position of having to remind people that he’d had seven heart attacks, at least two strokes, kidney disease, and liver failure. I felt like people were in la-la land and I needed someone to validate my panic and pain.
A lot of people gloss over thing because they’re afraid to face the truth. I don’t know if that’s what my family was doing, but Megan may fear incorrectly that this is what you are doing now. I agree that you should check in with Megan more often, but not be afraid to ask to limit the conversation when you need to – as you would for any problematic topic.
Once she feels that you understand, you two may be able to lean on each other in a much healthier way through this heartbreaking time.