Primary (spouse) starting to sound impatient with me (secondary)

LittleVolcano

Hi Spouses,

Secondary caregiver/daughter here with questions about some new family discord that's forming between me and my father, who's the primary for my mother who has moderate/severe dementia ("probably" Alzheimers) as well as recently diagnosed giant cell arteritis.

Recently Dad has started sounding impatient with me, and I'm trying to figure out how to be sensitive with him, but also retain my boundaries that it's not acceptable to get snippy with me, no matter how exhausted he is. Background: We've been scared that we were going to lose Mom over the past couple weeks, so tension over that is high right now. I personally feel like she's leveling off, but I think Dad is still on edge.

I don't have time for a long explanation, unfortunately, but he's started to give me this impatient/sarcastic "I got it!" vibe (as in, "I can care for Mom myself, and you can go do your sissy self care and caregiver therapy crap, ok?"). And I know how exhausted he is (he's not taking care of himself right now no matter how much he says he is), but I can't let him talk to me like that, because I'm at the end of my rope too. Do I have a right to request that he speak to me respectfully? Or do I have to suck it up (which, I'll be honest, I don't have the energy for) because he's the primary and is getting the worst of it?

In the past, I felt like we were a team, but now that we're approaching 24/7 care issues and he has to make the decision between a board at home facility vs bringing in caregivers to the home, I feel like he's getting mad at me for trying to get information about either choice (he's starting to make decisions without telling me, which is absolutely fine, but, I don't know, I just feel like I"m being pushed away, which is also totally fine, but I refuse to be treated badly in the process based on how much I've contributed all these years and especially now).

Anyway, I"m not the first person to be in this situation. I'll be posting this in the "Caring a Parent" forum as well, but I want the spouses input as well.

(And we are trying to either bring in more care or place Mom in a local board and care. I've been trying to get as much information for Dad about each scenario as possible because he gets panicky and doesn't know which choice to make at this time. But in the interim we'll be pressing our once a week caregiver to see if she can contribute more hours per week, which will hopefully release a little pressure)

Thoughts?

Jeanne C.

Sorry that you and your family are dealing with this. It's hard having a LO with dementia regardless of the relationship. This is awful for your family but try to put yourself in the position of your father. His partner, the person he has made joint decisions with for years, isn't there for him any longer.

I hope others will chime in. In my opinion, you need to defer to your father unless you are the medical POA. Offer help but he's running the show. Yes, you should expect to be spoken to respectfully. But also consider how disrespectful it may feel to him having you insert yourself if he hasn't asked. I think we all get offered lots of well-meaning advice but true help is someone who will step in when we ask. And consider how sad and scared he's feeling. I know this is your mom and that you are also sad, feeling the pressure, and just want to help. But your roll here is support.

Like I said, I hope others will comment because this is just one wife's opinion. Sending virtual hugs to you and your family.

Denise1847

It may be that Dad is projecting his anger at the situation on you. Yes, it is hurtful to be spoken to disrespectfully, but before you say anything to him, ask yourself if your Dad would normally behave this way or are the stressful circumstances causing the behavior. Is it possible that your Dad has the beginnings of dementia (God forbid)? Being tired and stressed will drive anyone over the bank. Try to step back and look at the situation from the outside. Just like we cope with PWD, who give us grief, is how you can handle your Dad. That is with patience, grace and understanding. Is it possible that some of this dynamic is really about control. You know alot and want to see things a certain way, and he thinks he is doing the best and wants it his way. Meanwhile, both of you are losing control of fixing your Mom's condition. With a decline, we get scared we are going to lose our loved one and we will try alternative ways to feel in control. Just blabbering here but I hope this helps.

harshedbuzz

Empathy is job one.

Your losses are not equivalent. You are losing a parent. It is the natural order of things to lose one's parents in the fullness of time; it is to be expected. Your dad is losing a partner and peer he may not have considered losing and is processing this differently than you are.

I don't know what your level of participation in care is, but I know as a secondary caregiver I wasn't carrying nearly the physical or emotional load my mom was despite managing the logistics of their lives. Maybe you need to give your dad some space so he can reassess and appreciate what you bring to the party.

HB

Ed1937

You have some good feedback above. He might be feeling as though he is competing with you for decision making. I'd suggest asking him if you two could talk, but don't let him think you are demanding it. Unless he is unable to make rational decisions, you have to understand that the decision making is in his hands. If he's willing to sit down with you, ask him if he would be OK with you giving him information that could make his decision easier and better for his wife. Stress that it is in his hands to make decisions, but you'd like to help with information, not decision making. Then give him the information you have, while choosing your words carefully. The two of you can work together for a good outcome, but don't lose sight of the fact that his authority might feel threatened. Whatever happens, please let us know. I'm sorry it has come to this, but I think stress is taking a toll on both of you. It happens, but you don't want something to come between the two of you that you'll regret later.

Ed1937

One other thing. It is not OK for him to get nasty with you. But if he does, simply tell him in a convincing voice that you know he's stressed out, and you're sorry. Don't tell him that it's unacceptable. That will only put him in a position where he feels he has to defend himself. If you make him feel loved, you will have a much better chance of getting what you want. In fact you could start the conversation with "I love you Dad. I know it's been hard, and I'm sorry". Your goal is to work with him and support him. If you do that, he likely will give you support too. That would be a win for all three of you.

upstateAnn

I think you need to tell your Dad you love him, Then you need to tell him you are afraid you will lose him too. Depression also can make a person snappy and mean. Live him and give him time. I have been there….

LittleVolcano

I spoke with Dad about the situation and we buried the hatchet.

He says he does NOT want more space, he's just panicked and overloaded—we both are—and he lashed out at me because I was there. We're currently back to being the dynamic [fumbling caregiver] duo. We just had a bad moment. I've always left all decisions to him, and he said he's found my research skills invaluable in all this and certainly doesn't want me to stop.

And of course I know that Dad's journey will never be the same as my own. I guess I feel like I'm taking care of two people—Mom because she's sick, and Dad because caring for her is making him sick too—so I feel like I'm helpless on two counts. But I fully understand that my 12-hour caregiving days are still no match for his 24.

He toured a family run board and care facility near us and really felt good about it. That and the lack of accessibility in their home for toileting and showering (and the overwhelming amount of care Mom needs right now overall) prompted him to go ahead with the application. The place is only ten minutes from their house and mine so we'll all be visiting frequently.

I'm so glad this didn't turn into "a thing" because Dad and I have really gotten close in this past 5 years. I was afraid this would create a rift, but it hasn't.

And we definitely tell each other we love each other every single day. We might be a head-in-the-sand type of family, but not about that.

Thanks to everyone who chimed in. It's very important to me that I don't make Dad's struggle any harder (while also maintaining my own boundaries, which I'm not good at), and thankfully we both worked it out. :)

Jeanne C.

I'm so glad, LV. All the best to you and your family.

CindyBum

I'm so glad this worked out in a way that seems to work for you all.

Ed1937

That's great! You need each other.

Davegrant

LV

We have a blended family and the dynamics between the seven children and their spouses and me are scary to say the least. I don't have a crisis at the moment but feel that I live on a mine field. My daughter is my go-to person and so far, it has worked most of the time. My DW disease is progressing, and it takes all I have to understand those dynamics and I know that I have not communicated with the children as I would like. My DW progression is so slow and subtle I never know what/when to share.

I am so happy that you shared what you have and happier still that you and your dad talked as communications are the best hope. Of course, our children are no longer children but busy functioning adults with grandchildren and lives of their own. of their own.

I hope that you continue to post as the families are the elephant in the room of this devasting disease.

Thanks

SDianeL

So sorry you were going through that stress. So glad you two worked it out and talked through it with love and understanding. He's lucky to have you. Keep us posted.

LittleVolcano

@Davegrant - Wow! Seven children! My mother is the second of eight, and can still, even as she continues to decline, can name all her siblings in order (to be fair, she stumbles on the last two, but she did that even before dementia. ha!)

"I don't have a crisis at the moment but feel that I live on a mine field."

I totally hear you. Prior to the GCA, Mom was a completely different, more functional (for lack of a better term), person. These last 7-8 weeks have been an avalanche, and has shocked us to our cores. Before this sudden decline, I think both Dad and I were bracing ourselves for the long haul, but now we're getting both a crash course in caring for every aspect of a loved one (and Mom is declining faster than we can care for her) as well as hurriedly relishing every moment with her AND psychologically letting go—preparing ourselves for the transition into the board and care facility as well as death itself.

"My DW disease is progressing, and it takes all I have to understand those dynamics and I know that I have not communicated with the children as I would like."

I could hear my dear father's voice in this statement. He's tried so hard to protect the lives we have as his adult children, bless him. But I don't have kids to take care of me in the future, so if Mom had something potentially hereditary, I (and my brothers) needed to know. More importantly, we needed to experience Mom as much as we could before she disappeared. My Dad didn't get too much of that opportunity, because the disease took away Mom's ability to recognize him very quickly (the disease has been treating him like an unwelcome stranger for 5 years. The disease is actually letting him help her these days, which is a bittersweet blessing).

It's funny, but Dad's common refrain all this time was "You have your families to take care of." I always joke with him that (1) he and Mom are my family too, duh, and (2) that they are my first family, therefore have dibs on me, ha!

"My DW progression is so slow and subtle I never know what/when to share."

Dad has been far more communicative than me and my brothers expected. He's also been more open to help, for which we are forever grateful (we thought he was going to bootstrap/white knuckle it alone; we are a closer, stronger family because he did NOT do that. Yes, he shouldered the lion's share, but he let us in. We are eternally grateful, and Mom would want it that way). For five years, he's been harassed by the disease ("death by a thousand cuts"), so he didn't bother sharing the minor slings and arrows too much because it was just best to ignore that as much as possible. They had a wonderful, loving marriage before this disease and, for me and my brothers, seeing the disease take chunks out of my father and ultimately their marriage was/is just as painful as seeing the disease take chunks out of Mom. However, what Dad did do, was he would text all three of us whenever he had a loving moment with Mom, just to highlight the moments when she was Mom again. We all relished those days/moments. I'm forever thankful to Dad for sharing the good times; they gave us fuel during the rest of the times.

"My daughter is my go-to person and so far, it has worked most of the time."

I hit the wall of my caregiving abilities when I realized that everything we do for Mom now—eating, hydrating, toileting, walking—is now a life or death matter. We're currently praying that she has a bowel movement within the next 24 hours because we didn't know that just because Mom was only drinking liquids, she still had to be having bowel movements (and we're hoping to avoid a third ER trip in three weeks). The life or death thing has definitely put me over the edge. Luckily Dad opted for the board and care (he did consider home care, but their house just isn't accessible enough). I mention this because, since your daughter already knows the situation, maybe discuss scenarios where she will be unable to help (or unable to help as much as she thought she could) and plan accordingly. Granted, I thought I could power through anything this journey presented. I was wrong. The hard-core agitation + trying to get Mom to do something that is critical to her health (toileting, walking, pills, eating, drinking, whatever), is what puts me into overload/shutdown/uselessness. We only recently hired an outside caregiver. She's amazing. We should've done that years ago (easy to say, but Mom would've been more combative with outside care back then, which is why we avoided it so long). Granted, we got lucky with the first caregiver we hired (she used to take care of a neighbor across the street, so my parents had an acquaintanceship with her already).

In general, maybe discuss your limits and her limits (or what you think MIGHT be your limits) just to get the rough draft of several plans in place.

AND, since there are so many children and spouses in the family, maybe a discussion about your DW's condition can be an opportunity to invite more involvement based on personal strengths. Ex: I am a solid #2 (no pun intended, since Mom's constipated). I'm not a leader, but I've been managing Mom's medical—appointments, follow ups, communications, making pill schedules, keeping Dad informed about Mom's appointments, etc. I'm most comfortable finding answers, organizing information. I struggle with the physical, intimate care, I'm ashamed to say (luckily, Dad and our hired caregiver are good at that part).

Dad and I did our best to recruit family (immediate and extended) to help. Phone calls, snail mail cards, in person visits—whatever your DW needs, just throw it out to your family and see who gravitates to what (my aunt prefers to call, my cousin prefers to send cards, etc). There are people who flat out enjoy doing [whatever task] so maybe throw it out there and see if anyone willingly picks it up. You and your daughter will always be doing the lion's share, but definitely explore who else is willing to help in a way that is easy and enjoyable for them (work smart, not hard, is my motto. ha!).

Whew. This has been really long. I have insomnia these days, so that's why (nothing to interrupt my typing if it's the middle of the night). Thanks for posting (everyone!). I care so much for my father, and by extension ALL the spouses. I keep telling my husband that, when we have more space to do so, we are going to have several discussions about "if [this] happens to me, I want [this]." He and I don't have kids, and I don't want to wait until it's too late to have these discussions. I will also have these discussions with Dad at some point when appropriate. He's told me his wishes after death, but as we all know, that's almost the easy part; I need to know his wishes for when he's still alive if he ever gets to a point where he can no longer communicate them, like Mom is now (FYI, Mom never communicated her wishes in this circumstance. We're just assuming that she would want to be as little a burden as possible, and would trust that we would advocate for her best care, which we are).

Thanks again @Davegrant for posting. Like I said, your post reminded me of something my own Dad might say. I wish he would post here, but for whatever reason he is not open to caregiver support if it involves people he doesn't know; I totally understand that for him. Thanks to you and everyone who posts. You all have been my lifeblood for the last 5+ years, and I can honestly say that my mother's care has been better because of this and other online resources.

Big hugs and rest to everyone. :)

Ed1937

LV. thanks so much for putting that all out there. I see similarities between you and one of my daughters. Believe me, he is SO lucky to have you. It sounds like you and dad have a very tight bond, and there's nothing better than that.

LittleVolcano

@Ed1937 - Definitely. I wouldn't say we were close before all this, but with both of my parents, there was always a tight bond. And our entire family is fiercely protective of each other, regardless of how well we get along in general. I've always respected my Dad for not treating me differently because I'm female. He taught me to fish, and gut that fish (with a dull, rusty knife, just like my brothers). He taught me how to work on my car, and how to efficiently pack the car for road trips (the guy is a master). I'm a more confident person because he didn't pigeon-hole me. :)