Emotional vent about dementia stigma

Stori

My mom won't tell anyone about my dad having dementia. Not even his sisters or her brothers let alone any family friends local to us. My nephrologist and shrink are begging me to reduce my stress. I've lost 34 pounds in three months. I can't tell how much she has lost, but when I hug her, she's getting so thin. 

I'm disabled and my depression and anxiety are treatment resistant. My kidneys are getting worse. I'm honestly worried one of us is going to collapse or I'll have a mental breakdown. I feel like my aunts and uncles should know the situation by now. I don't know if they would even get involved, but I'd rather give them a head's up than blindside them. I'm trying to get phone numbers.

There's absolutely nothing to be ashamed about regarding dementia making them keep this secret. I'm so tired of talking around dementia, not saying the word, and pretending it's not there. Even my therapist has trouble when I bring up dementia. She steers the conversation away from the topic. 

I want to talk about it. I need to talk about it.  I'm the one who took the car keys away. I'm the one who is carefully watching the finances getting ready to take away access very soon. I'm the one who does the things that upset him and the emotional labor.

I'm the one who didn't leave, and they still brag about my sister because she's "successful."

My sister is a lawyer and she abandoned us the day I told her we thought he had dementia because she is ashamed of it and sure we'll ruin her career. She literally bought a new house and won't give us her address.  My dad is heartbroken. My mom is in denial. I'm in so much pain. 

It's been such a hard few months. I'm not sure my kidneys are going to live as long as my parents and I'm so scared noone will take care of them if I die. No one is taking care of me. 

ButterflyWings

(((Stori))) - sending you loads of virtual hugs! I am so sorry you are in the same sinking boat as all the rest of us here. There is definitely a time when you have done all you can, and reinforcements are required. Often, help doesn't come from where we would expect, and think it "should" (like family which can be notoriously awol and or even oppositional). 

Though neither option is great, I would rather have someone check out completely than be in the middle of things, but pulling in the opposite direction constantly, having experienced both. 

I don't have any great ideas to help relieve your stress right now, but know that you have been a blessing and that is worthy of so much appreciation and I am going to thank you right now for all that you have selflessly done. Also, it sure sounds like it is time for you to take care of you -- put you first. I know we get so many messages in society that it is selfish or wrong to do that, but it is not. Hoping you can get some rest tonight, and a bit of peace of mind even if it is in short doses for now, as often as possible. Others will come along by morning and will have some more organized thoughts and supportive suggestions for you.

In the meantime, know that you are not alone. And like they tell our vets, "thank you for your service". Having been a spouse/caregiver now for approaching 4 years 24/7, I understand what you are feeling and for what its worth I agree with you 100% - time to let your dad's siblings know at least. That's what I would do. They may not help, but not letting them have the chance to step up...your mom may be overwhelmed by his decline or she may be slipping a bit herself I'm sorry to ask... I have to keep reminding myself sometimes still, not to let dementia run the show. So, even if your mom is not the PWD, the thinking can be off, and it is affecting you terribly. Maybe call the Alz hotline to talk through what is going on, and also there are several IRL - in person or online groups for family members or LOs of person's with dementia. Definitely connect so you can feel better by letting it out, despite the sadness of what is happening.

Take good care of you. You deserve it!

harshedbuzz

Stori wrote:

My mom won't tell anyone about my dad having dementia. Not even his sisters or her brothers let alone any family friends local to us. She claims we are doing fine.

Is this your mom's decision or one they arrived at together? Is you mom in loving denial? My mom refused to see dad's worrisome symptoms as dementia for almost 10 years while I ran around like my hair was on fire. She felt doing so was disloyal in some way; protecting his "dignity" was important to her. When dad's unfiltered behavior cost them a social life, she was willing to pull up stakes and move to a new community to give him a fresh start rather than admit he'd had a cognitive shift. Twice. My own parents were very private people; given their druthers they would not have shared this information with me. In addition to mom's denial, dad had anosognosia and was unable after a point to recognize that he'd had some sort of cognitive shift. He would felt someone sharing his condition to be lying about him behind his back. 

Perhaps there is some sort of family dynamic between your mom and in-laws that is driving this decision. Maybe mom doesn't want them interfering with his care or playing devil's advocate in some way that makes a difficult situation even worse. Once dad was finally diagnosed and family looped in, my parents each had a sibling who had lots to say about care decisions. I'm an only and mom basically deferred to my judgement on things, plus I don't think either had the guts to confront her with their expert opinions. My dad's brother was opposed to a MCF placement as "too soon"(dad died 7 weeks later), he threatened to get dad a TV and cable service when I purposely didn't put a TV in his room because it fed his delusions of being unsafe. And my mom's sister, who loathed my dad and not without reason, felt continuing treatment for prostate cancer to keep him comfortable might be prolonging mom's unhappy situation and maybe I should just push him over the edge with morphine.


The bigger question is how do you think the dissemination of news is going to change your family's day-to-day life or lower your stress level? With his family at a distance, it's unlikely they'd be of any help. It's pretty hard to miss dementia in someone you know well; if they're close they probably already know and if they're not they don't need to know. 

IME, friends will scatter as soon as dementia is obvious. They will be dropped social and become more isolated by couple friends. My parents burned through "friends" in 3 states-- only two of their long-term friends stuck around. If your mom has friends outside the relationship, they may continue. During dad's dementia journey, my parents' good friends/neighbors kept an eye out for dad one week while she was at a funeral once making sure he had dinner and dropping in before he was officially diagnosed (they both had parents with dementia) and my uncle came to visit for 30 minutes once every 6 weeks or so. No one eased the burden or stress of the isolation. 

My nephrologist and shrink are begging me to reduce my stress. I've lost 34 pounds in three months. I can't tell how much she has lost, but when I hug her, she's getting so thin.  I'm disabled and my depression and anxiety are treatment resistant. My kidneys are getting worse.

Given what you have written here and shared in your profile, it makes sense for you to focus on your own physical and mental health. As they say in the airline safety presentation-- you need to put on your own oxygen mask before you can assist others.

You should probably move out to protect your own health. Your disability would qualify you for low-income senior/disabled housing which would give you a space away from this situation. 

I'm honestly worried one of us is going to collapse or I'll have a mental breakdown.

One of you likely will. It's said 1/3 of caregivers died before their LO. If you will succeed as agent on dad's POA, you will need to have a Plan B for his care. 

I feel like my aunts and uncles should know the situation by now. I don't know if they would even get involved, but I'd rather give them a head's up than blindside them. I'm trying to get phone numbers.

This is a difficult situation. Your parents-- especially your mom-- may have valid reasons for not sharing this news. I've even heard of families writing their LO out of wills, family trusts and the like because of the diagnosis or demanding family heirlooms. This isn't really your news to share and could make your stress higher if all it serves to do is make your mother angry with you. 

There's absolutely nothing to be ashamed about regarding dementia making them keep this secret.

Amen.

I'm so tired of talking around dementia, not saying the word, and pretending it's not there. Even my therapist has trouble when I bring up dementia. She steers the conversation away from the topic. 

I got my mom a psychiatrist and therapist when dad was diagnosed, the psych is amazing but the therapist was a dud. They just didn't click-- the therapist was big into post-divorce and women's empowerment counseling which wasn't an ideal fit for where mom's head was. She got much better help and understanding from her support group. Given all that you have going on in terms of mental and physical health, one therapist isn't going to have the breadth to address each of your needs. 

I want to talk about it. I need to talk about it.  I'm the one who took the car keys away. I'm the one who is carefully watching the finances getting ready to take away access very soon. I'm the one who does the things that upset him and the emotional labor.

This place and an IRL support group would be people who totally get this. Do you have the POAs to act on the financial piece? This is critical because banks and investment brokers are going to want to see hard copies in order to allow you to shut him out. Freezing credit makes sense as well. You want to be proactive on this because you don't get a do-over. My dad pissed away $350K day-trading while mom fought me on getting him diagnosed. 

I'm the one who didn't leave, and they still brag about my sister because she's "successful."

Just because they're proud of your sister (and I would be too, btw) doesn't mean they aren't proud of you. 

My sister is a Federal Judge and she abandoned us the day I told her we thought he had dementia because she is ashamed of it and sure we'll ruin her career. She literally bought a new house and won't give us her address.  My dad is heartbroken. My mom is in denial. I'm in so much pain. 

It would be very hard to make that career work and be sucked into hands-on caregiving, but I suspect there is more going on in this dynamic. Perhaps she fears dementia for herself. Perhaps she fears becoming your caregiver as some siblings of those with special needs do. 

It's been such a hard few months. I'm not sure my kidneys are going to live as long as my parents and I'm so scared noone will take care of them if I die.

It is hard. In what stage is your dad? Does he require supervision 24/7 and incontinence care? Do they need to bring in HHAs or consider a MCF for dad or maybe a CCRC that would provide escalating care as needed if you couldn't? That might be a prudent decision on their parts. 

No one is taking care of me. 

I'm sorry. That so hard.  You have a lot going on. I feel you could best serve them by putting your needs first. 

HB

ButterflyWings

HB makes a very good point about reasons why his sibs maybe should not or have not been updated by mom. I didn’t think about all those dynamics. If you are the one authorized to stop the driving and intervene to secure their finances I was interpreting that as POA level (officially or not) - giving you some discretion to step in, including making other executive decisions like letting immediate family know what’s happening. 

You definitely have to prioritize your own health and wellbeing at this point, regardless. I hope today is a better day.

ButterflyWings

 HB makes a very good point about reasons why his sibs maybe should not or have not been updated by mom. I didn’t think about all those dynamics. If you are the one authorized to stop the driving and intervene to secure their finances I was interpreting that as POA level (officially or not) - giving you some discretion to step in, including making other executive decisions like letting immediate family know what’s happening. 

You definitely have to prioritize your own health and wellbeing at this point, regardless. I hope today is a better day.

May flowers

I don’t have much to add to the wonderful advice HB and BW gave you, just wanted give you virtual hugs and know we are here alongside you and please keep reaching out here for support. 

There are many people here (myself included) that even though family members know and may offer encouragement, they really haven’t stepped up to help. And some here probably wish family didn’t know because they started meddling and making things worse!

Is a part time caregiver a possibility? Or adult day care for your dad to give you both a break during the day? If your parent’s can’t or won’t pay for a caregiver, maybe you could qualify for one through disability - they might not help with your dad, but even the extra help with meals, laundry and housekeeping could give you some time for yourself. Just a thought.

Hugs and prayers for you.

Rescue mom

You do need help, and you’ve already gotten so much good advice I cannot add much. A “real life” support group would almost certainly help you. And you need and deserve all the help you can get, however you can get it—which may run contrary to what LOs with dementia want. Your aunts and uncles need to know, IMO, but I also assumed you had POA etc.  Hopefully they can help. It’s a shame your sister doesn’t. 

I don’t think there’s much stigma to dementia anymore (I don’t use the names when talking to my DH with Alzheimer’s, but I did tell others he had it). But many others just don’t want to deal with it. Dealing with PWDs takes all your time and energy, and they are usually unpleasant regardless. Friends tend to vanish, and so do many family members. If you can get paid help, take it. If your relatives offer to help when they’re told, be ready to tell them yes and how.  Talk to your local Alzheimer’s Association about available resources near you.

Arrowhead

Almost everyone who knows my wife, knows that she has Alzheimer's. I have been surprised by how many of them have had at least some dealings with someone else who has had dementia. I have gotten a lot of support and understanding from them that has helped me along the way. Just having someone to listen to you can be very therapeutic, especially if they have experience with it. Eventually, your aunts and uncles and close friends will find out about it and will be hurt that they weren't told sooner. Let them know, you might be surprised at how sympathetic they are.

I won't tell you how low I think your sister is.

Olly_Bake

Hi Stori! First off, hugs and love sent your way.

I don’t know your relationship with your mom. If you have a relationship and she's still at a stage to communicate some, have you asked her why family has not been told (his sisters or her brothers). 

With that being said, I don’t know if informing all who will listen will reduce your stress. Fact is, it may cause more. Speaking of my experiences only with family especially, is that it adds to an already highly stressful situation. Don’t be surprised if you get more people offering opinions rather than be of service. A week ago, as I brought dad home from the hospital my enemy brother as he call us was there with much drama. I thought I’d have to call in to have him removed or take dad elsewhere until he left. He can’t do this, and he want do that and the sibling living there should not have to do this or that. Trying not to add fuel, I kept quiet until I could not and finally mustard up to say financial contributions are also welcomed.

I don’t know if I’ll go hunting phone numbers and dialing out of the blue. However, if these are family and friends that visit or call, I would ease into the conversation if asked how they are doing, do you need anything, or something along those lines. If you could, I would say the first numbers to dial would be for as many outside of the family resources you can find to get yourself help first and then your parents.

Daughter80

So much and so hard. I agree you should not have to hide this. And that people have really surprised me with their kindness. What can you do to ad help for your dad that helps you and your mom?  A caregiver? A day program?  What do you do for you?  Big hugs. And you are not alone.

Stori

Thank you all.