What do I say?

tackyjack

Friends and family know what is going on with my DW, and have been very helpful and supportive. Periodically one of these dear people will say, “How is she doing?”. It’s hard for me to say “a little worse every day, it seems” even if that’s the truth. I would like a better answer, but haven’t come up with one. Any ideas?

forbarbara

“Short answer - she’s still here”. With any luck, they’ll take the hint that you don’t want to give the long answer. What they probably really mean is “How are YOU doing?” Depending on who it is, I think it’s okay to say “actually I’m a walking sh-t show” once in awhile.

gampiano

When people ask me this, i know they mean well, and are trying to be considerate but I am tired of glossing over the situation, and i have started being truthful. Short, but honest answers. People need to know, and there needs to be more awareness. I also tell people who don't know me that my husband has ALZ, and Im finding that in general, folks are a little more considerate, might even let me jump the line at the post office, especially if DH is waiting for me.

By the way, this applies to family members as well.

Sending good thoughts your way,

Maureen

GothicGremlin

Yeah, this is a tough one.... no easy answers. Here's what happened in my case though, I don't know if it'll be helpful.

In the beginning friends and family were always asking about Peggy (my sister) - it was the typical "how is she?" I tried the education route, I'd send links to articles that I thought were particularly good, etc. Of course it didn't work, even with close family. For the very few where education did work, the questions changed from "how is she?" to more "what can I do for you?", but really it's a mixed bag. I think all of them mean well, they just don't know what to do.

Peggy's been in memory care for almost two years now and it's been an eye-opener for me as to how people relate to Peggy (or me) these days. Many people have fallen away so I don't often encounter insensitive questions anymore. Of the core group who have stayed (much to my amazement), they're educated and we work together. No insensitive questions, just things like offers to go see Peggy. They may ask what her mood is like, what topics they should stay away from, what treats can they bring, etc.

This core group is not the group I would have envisioned back in 2018 when Peggy was first diagnosed. This group is her best friend from college, her best friend from kindergarten, her veterinarian (!!), her ex-boss at her long term job. Family is on the sidelines. My brother has visited Peggy a few times, but other than that, no other family member has done so. No blame, no judgement, I think they're just uncomfortable.

I guess this is my long-winded way of saying that things change over time. The insensitive questions phase will likely pass and will turn into something else, tbd what it looks like. In Peggy's case she lucked out with some very good friends.

tackyjack

Thank you all for your answers. I appreciate the input. My Gail is still at home and friends and family have offered to help. I don’t think I need it yet, but know that that will change. Another question: When did you start to think about bringing help into the home, and when did you start to think about a memory care placement?

AZGuy

https://alzconnected.org/discussion/comment/200781#Comment_200781

Hi tackyjack,

I wouldn't wait too long before 'checking' on outside help to come in. Doesn't mean you have to do it now, but check different agencies and maybe see if there is financial help available to pay for someone to come in to help.

As far as friends and family helping out; if your DW is comfortable with the friends/family there to spend the day with her, use the time to get away for part of the day to refresh yourself.

Just a little time away will make you look forward to get back to your LO.

GothicGremlin

Hi @tackyjack I brought in-home care fairly early - just for a couple of hours every few days. It was more for the socialization than anything else. The caregivers would just hang out with Peggy, keep her company, play easy board games with her.

Memory care was a tougher call, but Peggy was frequently getting lost in the house. It was stressing her out. I also started worrying about her safety. Once she got over the shock of being in memory care, she told me that she should have moved there sooner. Memory care is a much simpler environment and there are a lot of caregivers there to help out. I never regretted placing her there.

spunkykid578

If you do not mind me asking, how did you tell people about the inital diagnosis. My DH is a very private person and does not want anyone to know that anything is wrong other than some memory issues. We have two children and we are out and about with their activities. My husband can currently still drive and often takes the kids to their events. I am sure people are noticing a difference (cant find words, repeat stories, etc...) and just being polite and not saying anything. I notice the differences so I am sure they do but I do not know how to bring it up and still respect his privacy.

Cranddi

https://alzconnected.org/discussion/comment/202523#Comment_202523

Spunky,

This is my first post, but the similarities in our situations drew me in to respond. My DW was diagnosed with EO ALZ three years ago and likewise didn't want to tell anyone. Our two boys live nearby and we are very involved in their families lives and activities. I'm sure they suspected, so against my wife's wishes I informed them. They were as devastated as I was, but were glad to know and have been very supportive and helpful. My wife still gets upset with me (several times a day) when she asks me if the kids know and why did I have to tell them.

Your comment that really got my attention was "My husband can still drive and often takes the kids to their events". The whole driving situation is very difficult to navigate, but I think my son's would be furious with me if I didn't tell them and my wife still drove the grandkids around. Not judging, just concerned. My DW's short term memory is shot, but physically she's still excellent. Her neurologist just referred her for an occupational therapy driver's evaluation. His big concern is her ability to recognize and respond to unusual events (someone swerving into her lane, navigating abrupt lane change in construct zones, etc). Beyond that, I don't believe she could defend herself in the case of an accident. She would be unable to recall the details. She's been fighting back against not driving, but she really doesn't need to, we're both retired. She hasn't driven since October and I'm sure her driving days are over.

As far a telling people about her diagnosis, I tried to honor her wishes as long as possible. However, she started to withdraw from social activities with her friends (book club, mahjong, golf) because she couldn't follow along anymore. At that point I decided to confide in a couple of trusted friends and asked for their assistance. They have been wonderful and help her keep track of her ball and keep her score playing golf. Someone drives her to book club, but she doesn't read the book, she just has a great lunch with her friends. She didn't push back much about me telling these friends because it has allowed her to continue to participant, otherwise she'd be sitting at home.

Caregiving is a difficult situation that none of us are prepared for. But in respect to their privacy, I'm learning that they are losing their ability to make rational decisions and they need us to set up to protect them. It's very difficult, especially when they push back.

housefinch

I know this has been discussed before on other threads, and I know both of you have incredibly stressful situations. This comment will unfortunately add to your stress, but could save your finances. @spunkykid578 The general consensus on these boards is that, if a family member knows someone has dementia and allows them to drive, and that person has an accident, the person they hit can potentially sue them for all their assets. I would hate to see your family bankrupted by that situation. Your husband needs to stop driving immediately, because his insurance typically will not cover him once there’s medical documentation of a dementia diagnosis.

ButterflyWings

@spunkykid578 my heart goes out to you, from one spouse caregiver to another. We are 5 years in, and early Stage 7 now. I have been where you are, and will encourage you to learn "don't ask, don't tell". And "just do it". It is hard, but increasingly necessary, for us to realize that things in our marriage have changed forever - no one's fault - but there it is. And that you are now in charge. You have to take action and find work-arounds and ways to do the right things, quickly, sometimes not even discussing with your LO. I know that isn't easy.

@housefinch was 100% correct about the driving needing to stop immediately. In addition to the possible terrible impact for your family financially, there is the serious risk of injury (or worse) to other drivers and pedestrians. It is not fair to unsuspecting others, to have someone with impaired memory and judgment behind the wheel of thousands of pounds of heavy metal moving at speeds. Please.

My DH has anosognosia and lacks any awareness that he has dementia or that anything is wrong. So we could not discuss his need to pull back, except for a few times on diagnosis and then he completely forgot. So, after experiencing first hand what we learn here, that "you can't reason with someone whose reasoner is broken", I went to work on my own to do what was necessary to keep him and others safe. Disappeared the keys many times, disabled the car, and finally disappeared it.

That is the short version, it was more involved and stressful than that, but nothing like what I would have felt if he ran over a jogger or child in the crosswalk. Trouble finding words and repeating things means he also is not reliable to remember exactly what to do when, in accelerating, stopping, yielding the right of way, remembering the many sudden unconscious decisions that safe driving entails, and adjusting quickly to others' unexpected maneuvers as stated. Vision and spatial awareness can also be affected for PWDs so you really must get him off the road at all costs.

The excuses I came up with to redirect my DH! And I perfected the blank look and empathetic tone when promising I would help him look for the car once it went missing. It may feel wrong, but it is right to do what is right. Not long after, he forgot all about the car and driving.

ButterflyWings

@tackyjack thanks for your post "what do I say?". It depends.

If it is someone who knows a little or a lot about dementia I may tell them we are end stages, or even 7a. If they have no clue about our situation other than hearing DH may be "ill", I tell them something like "dementia is doing what it does".

After a rough day or week, I still try to keep it light for most casual inquiries even from well-meaning friends, and may say "dementia's got jokes". Usually I go with the truthful, "he's hanging in there, thanks for asking". Most people do not want the long answer, even family.

When traveling or in line at a grocery store, or other time when behavior may be slow or a little "off", I may just say the word, dementia, or "Alzheimers doesn't rush well" or something like that. DH has anosognosia so discussing it around him does not present a problem as it might for some PWD LOs who are aware and/or very opposed to (or offended by) the diagnosis or any discussion.