Unbreakable Kimmy Schmidt star Jane Krakowski has been open about her family, most recently revealing her son’s affection for RuPaul’s Drag Race. This week she’s telling a much more serious tale, detailing her late father’s battle with dementia.
Jane is speaking out on behalf of the AARP’s $60 million Disrupt Dementia campaign, an initiative focused on resources for families and caregivers as well as research. Her father, Ed, was diagnosed with early onset dementia. After dealing with the disease for almost a decade, he passed away two years ago. Jane told People she decided to share her story now because “I decided it would be a nice day to speak about the memory of my father and what we personally went through, if it would help others who are going through it as well.”
As her father’s health began to deteriorate from the disease, Jane said, “My mother [Barbara] was the main and sole caregiver of my father through most of the years, until she needed additional help at the very end.” She added, “In many cases, I think it is as hard or sometimes even harder for the caregiver during this process — to take care of a loved one who is suffering with dementia.”
She stressed that even though she and her brother joined her mother in caring for her father, community resources were also essential in surviving this difficult period, noting, “I think looking towards your community is a great way to get support through this process. And of course, the main focus of our family’s plight was to try to help my father and alleviate what he was going through through all the different stages.”
Ed’s diagnosis came as a surprise to the family. No one thought that Ed, a smart, well-educated man, could fall prey to the disease. Jane addressed this:
“One of the misconceptions, I think, is that if you use your brain daily, perhaps you won’t be diagnosed with it or it wouldn’t happen to you. And my father taught himself piano, he taught himself magic, he worked as a chemical engineer during the day.”
“He used his brain to a great degree in all facets of his life and was physically active as well,” she continues. “So you just never know when and who it could happen to. And the numbers are staggering, so it’s happening to a lot of people.”
On Monday, Jane was on the TODAY Show in advance of her appearance later that day with Katie Couric at the #DisruptDementia event at Neuehouse. In the interview, she acknowledged that the Bill Gates Foundation donated $100 million towards the AARP’s research efforts and again spoke about her father’s experience with the disease, recalling:
“It’s heartbreaking for the people who are aware of the amount of the decline in the patient—from them not remembering your name or whether it’s you when who came through the door. My father and I used to dance and sing together all the time and—this was very near the end—I was able to get him physically up (he was wheelchair bound at this time) and we just danced a little to the music and he lit up again like the days that I remember. Those are the moments that just carry you through, and I felt like I brought a little bit of light and the remembrance of the love that we had together in that moment.”
As someone with elderly parents, this story really hit home for me. I want to give them both a hug now, because we don’t have them forever. I’m glad that Jane is sharing her story and I hope this AARP initiative finds a cure for this devastating disease.
It was moving to speak with #JaneKrakowski this morning about her father’s struggle with dementia. Today @AARP announces their commitment to #DisruptDementia with a $60 million investment in @TheDDFund to support urgently needed research into dementia prevention and treatment. pic.twitter.com/0xSzyCrdsL
— Katie Couric (@katiecouric) June 25, 2018
Photos: Getty Images, WENN.com
Kudos to her for talking about this.
It’s such a cruel and devastating disease. My mum was diagnosed before Christmas and it’s so hard to watch it eat away at her bit by bit and to see her deteriorate. God bless all the carers as it’s such a difficult job, my dad is caring for my mum and it’s tough on all of us.
Dementia is an evil disease, my mother has sub cortical vascular dementia and there is little to no ways to treat that – heartbreaking as its the 2nd most common form of dementia after Alzheimers. She had several mini strokes over the years that left very small holes in the blood vessels in the brain that caused the brain damaged that in turn caused the dementia. My dad was her carer until recently when he took the difficult decision to put her in a care home as it became too much for him. The family carers are often the forgotten ones.
Am glad she is speaking out, much still needs to be done to educate people on the disease and more research needs to be done. It’s not just an old persons disease, people of all ages can suffer. If you see someone who is confused, help them!
My grandmother died of this two years ago today. What I think was most difficult was watching this wonderfully kind and funny woman turn into this different person, mean, angry, violent before being put in a home and finally having a larger stroke which killed her.
My grandma died as well, she suffered from dementia and it was like i lost her years before she actually died.
It’s cruel to all family members. I kind of blocked her last years and remember only the awesomeness she brought to me when i was a kid and a teen
Same Honest B, I had to watch the sweetest, gentlest, most loving woman in the world turn into an angry, violent, uncontrollable, unrecognizable woman. She started biting the nurses, hitting her roommates, attacking hospital staff…. It was 11 years ago when she died, it was horrible. I still have a problem reconciling her with the grandma I knew.
Digital Unicorn,
I’m so sorry for your mother’s (and your family’s plight). I think the only thing I would add to what you wrote is that if the carers are not only forgotten, often they are roundly criticized much of the time for various reasons, including false elder abuse, fraud, etc. I’ve been through this. It is heartbreaking and enraging. The injustice of it all. The disease itself and the unwarranted criticisms and accusations. I think the latter comes from (1) guilt and (2) greed (inheritances).
As much as I empathize with her, I have to disagree. Sandly I realized a little too late that the opposite is actually true. My dad was a fully engaged, working person with diabetis. Unfortunately a heart surgery triggered his dimentia which is not uncommon among peolple with long time diabetis diagnosis. We had no idea, no one told us about this risk and he went from a an architect with a career to a person who could not understand what was happening around him in one day. Only now that he passed I realize how scary and horrible it helf for him to realize he is dependent on someone else, that he is turning into something he can not control or understand. Yes, it is hard on everyone, especially the caregivers (it was mainly my brother, me and my dad’s partner takig care of him in addition to me and my brother rising toddlers) but it is too ofter perceived that we as people carrying for people whose mids get eclipesed have it harder because they can understand the horrow of reality unfolding before their eyes. And the fact is we nust do not know how it feels from the inside of that mind. Just because they can’t tell us…ok. gotta stop, because now I am crying over my lunch.
My dad is in early stages of dementia, and it’s terrible. He has good days where things are fine, then there are bad days when he gets easily upset, stressed, and can be a little nasty. I don’t know what we’re going to do, because my unhealthy mother cannot be his only caretaker. I take care of them both, but I cant always be there. My grandfather had alzheimers for 15 years and seeing that sweet man no longer walk, talk, having no expression on his face, and not being able to take care of himself was awful but I never expected anything like it would happen to my father. This disease is horrible and devastating to the patient and their loved ones
I’m sorry you’re going through that.
I work with elders, and there have been so many good things that can come from working with music. Loading an ipod or creating a playlist on a phone, that has songs that are of special significance to your dad, can sometimes offer a bridge over rough times. Music memory is phenomenal medicine. Take care of yourself.
I’d also suggest that you sit down with a geriatric social worker – you can probably find one through your county’s department on aging if you live in a city.
My mother died recently from Parkinson’s disease, and what SM (above) said about watching her father go from an active, engaged person to someone who couldn’t understand what was happening to him happened over a multi-year period. She spent her last four years in a memory care unit, and we were so lucky to be in a place where she – and I (the rest of the family was out of state) were lovingly (by many of the staff – it wasn’t perfect, but it was probably as close as it gets in this kind of situation) looked after. It was horrible to watch her die in pieces, like a gingerbread cookie being crumbled piece by piece. Need to stop writing or I’ll ruin my keyboard with crying.
I hope Jane and her family are comforted by their memories of her father in better times and by knowing they did all they could for him through his last difficult years.
Hugs to her. It’s good she’s speaking out.
At around 3:00pm everyday (not sure why) my grandmother forgets where she is, who she is, who I am etc. One Saturday when she realised that she couldn’t remember things she started apologising and asking God for forgiveness and crying. It was horrible and it made me realise how hard it is for her to no longer understand her world 🙁
it’s most likely a sign of sundowners. there’s a lot of information online.
There’s a lot of sorrow involved in aging. I feel for anybody who has to watch someone they love lose their mind.
You may want to ask her doctor about Sundowners Syndrome. My YaYa had it in her last few years. It’s so hard to be a caregiver. Hugs & prayers for your family.
Remind her that you love her and tell her that’s all that really matters. And hold her hand and hug her. And acknowledge that what’s happening to her is scary and that you are here and will be there for her.
Hugs to you. It’s a hard, hard thing to watch and it’s hell for the elder to go through.
Courage.
It is horrible and devastating to everyone involved.
I was the caregiver for my Grandmother and…it was very difficult and sometimes I didn’t know if I would be able to do it. She passed from COPD and I still feel guilty that I didn’t do more as she was in a home the last 2 months of her life.
I will forever live with the guilt. I care for my mother now and worry she will develop dementia as she gets older and when I forget things I get paranoid as well.
Recently I found an old journal of my Gran’s and she had started to write she knew she was getting forgetful, doing things wrong and she hid it ..it was just sad to read that she knew she was losing her brain function and was trying everything she could to stop it and keep it hidden.
It sounds like you were a very devoted granddaughter. If you were able to care for her all but the last eight weeks, that is an accomplishment.
Caregiver guilt is something we struggle with, isn’t it. Always thinking (no matter how much we did) that we could have done more. Reality is often that we did all we humanly could, without falling over of complete exhaustion ourselves.
It is harder for the caregiver. My mother’s doctor warned me about this long before things got really bad. The patient has support-the care giver doesn’t and we pay a price most people don’t know about. This disease not only the patient but the people around it.
Three of my four grandparents got Alzheimer’s. One is still battling, the other two have passed. It’s so heartbreaking to see, and knowing in all likelihood my dad will get it and possibly my mom as well just makes it all the worse. I’m not really worried about getting it myself because that’s so far off, but I can’t even think about losing my parents to it.
Never thought it would happen so soon and so fast to my Dad. Make videos, recordings of their voices, get them to tell their stories, their memories, and that they love you on video. My Dad cannot do this now, he speaks very little. I have a voice recording of a mundane conversation that I once would have considered meaningless and now means so much. I will never have the privilege of a mundane conversation with him again.
It is terrible for all involved. 🙁 She’s not wrong or selfish to say that it’s harder for the caregiver because they’re the ones who are painfully aware of what is really going on. To watch someone deteriorate before you is one of the most difficult things ever. I’m going through it with my aunt, who is in a nursing home… She has days where she’s clear, but it changes even from moment to moment. You never know who you’re going to get when you see her: the person she was, or the person she’s become.
My mother was just diagnosed less than a week ago. She can’t drive. My father is the one that is angry and full of denial. My sister and I take turns taking her to dr appts, etc.
it’s turning into a ft job since I live 30 minutes away and it’s emotionally draining to see your mom not remember things she live for in the past like grandkids’ birthdays and graduations.
Trying to stay strong because I know it’s going to be a long road
How sad. I am scared Sh*tlessbecause Alzheimer’s runs in my father’s side, particularly in females.
I have said for a long time that Dementia and Alzheimer’s are horrid, despicable diseases that I wouldn’t wish on even my worst enemies. It took my grandfather, my best friend’s grandmother, and now it’s taking the mother of the woman I work for. She brings her to the office every day and I’ve been watching how it eats at her for the last two years. She asks where she is every few minutes and thinks she’s a child. She had an hour of clarity about a year ago and when she had to be told her situation and her age she broke down in tears and said she wanted to die more than anything and go on. It took my grandfather from being a man who always wore his cowboy boots and Levis with a belt and a shiny buckle to a man who shuffled around in sweat pants and tennis shoes. All my life he was a strong, tough man. It was so hard to watch him die that way. Now I’m going to sit here and cry. Screw Dementia. My heart goes out to Jane.
It is a devastating disease. I am sad that so many people here can say it has touched their lives with close loved ones. I think dementia/Alzheimer’s needs as much attention and research as cancer. The numbers of those afflicted grow daily, it is a devastating debilitating disease that incapacitates in ways that make care and support so much more difficult! People often use facilities to handle patients because of those difficulties, I have seen firsthand how poorly treated theses patients are, care workers seem to treat patients like they’re in daycare, instead of afflicted with a disease that needs individualistic support and treatment. I am fortunate, my father and I share support duties so we can keep my mother home. It is the most difficult thing I have ever done, never mind the Herculean efforts of my father through most of the worst years of her affliction. But I will never go back to a facility. My father found a “high end” memory care facility for $5,500.00 per month. We thought it would be top notch. We removed her after 3 days.
And we know we had the best options. Imagine those that can’t afford anything, but government run facilities. It is heart breaking.
i love her even more for talking about this.
It’s devastating to both have some form of dementia (including Alzheimer’s) and to be the caregiver of someone with dementia. Something we can all do is contribute to organizations doing basic biomedical research into the causes – which remain elusive. We can support and vote for governments that fund research and aid caregivers, that acknowledge this is a women’s issue (that afflicts both sexes) and an inter-generational drain on health, energy and finances. We can ask our family members if they are willing to donate brain tissue for basic research, and to participate in studies of cognitive aging (when they are healthy – long-term prospective studies can help illuminate why some get sick and others don’t).
US cuts to Medicaid are very worrisome because it is the single largest payer of nursing home bills, which means it pays for all the long-term care of (mostly female) Alzheimer’s patients. What is going to happen without that? Fight for Medicaid: It’s not only for poor people (though they deserve health care), it’s also for people with long-term disabilities. And poor people get Alzheimer’s, too.
There’s no known prevention but we can all reduce our risks by getting lots of cardiovascular exercise, staying social and engaged — doing hard things as we get older, not giving up. Exercise and maintaining a healthy blood pressure (neither too high nor too low) appear to be central. The phrase is, “What’s good for the heart is good for the brain.”
One thing I wish these stories made more clear: It’s most likely Krakowski’s father was diagnosed in the early stages of Alzheimer’s, given his age. Early-ONSET Alzheimer’s is much more rare, is passed down in the genes, and can develop in midlife. It’s much more likely that people develop Alzheimer’s disease when they are old, and then it’s just a matter of diagnosis in the early, middle or late stages. One out of four people carry a genetic variation (of a normal cholesterol-processing gene) that predisposes them to greater risk when they get older, but it’s not the same near-guaranteed, fast-moving form of the early-onset disease. Alzheimer’s is just Alzheimer’s: It will progress.
That book about “Alice” was about the genetic mutation, the early-onset form, which she hadn’t realize she carried. People can marry and have children before they realize something’s very wrong that runs in the family.
I have been reading a lot about dementia/alt being a “type-3” diabetes. Sugar and insulin-resistance can cause inflammation all over the body, including the brain. You can be thin and still be insulin-resistant. It would make sense since brain issues are more prevalent as people get more unhealthy/overweight.
I almost didn’t read this thread b/c I went through something similar with my mom. She was quadriplegic for the last six years of her life, though I only did full-on caretaker duties (sharing them with my sister) for the first year. That first year, we were all so emotionally and physically wrung out — my mom, who hated seeing her daughters having to care for her every bodily need, and my sister and I, who barely slept as my mom needed one or the other of us every few hours during the night. My mom never lost an ounce of her amazing intelligence and awareness so I can’t fully relate to people whose parents or grandparents suffered from dementia, but for my mom to be so much herself when she’d lost control of her entire body was devastating. And the exhaustion we felt as caretakers was profound. It’s so hard to be heartsick on top of being tired all the time.
My advice to everyone and anyone is: hire people to take care of your loved one. You can still pitch in of course, and keep them company and take them to movies, the zoo, restaurants, etc. BUT once we hired 2 people to come in and do my mom’s physical care — bathing her, dressing her, feeding her — it was easier for all of us. My mom had no problem telling professional caretakers what she needed, and she was always so torn up about asking my sister and I to care for her needs, hated to wake us in the middle of the night, etc. And for the caretakers we hired, well they didn’t have the emotional load of caring for their mother, she was a client to them, and they did their jobs well for her. I know not everyone can afford in-home care, but if you can afford it, that is by far the best option.
I work in a nursing home and it makes me so incredibly angry at the judgment the caregivers receive from placing their loved ones in one. As if they don’t feel guilty enough. We have people with no living relatives, children that are still having to work, or caregivers that simply can’t handle the progression of the disease.
It can be so easy to judge based on your own experience, but there’s truly so many variables. There’s the risk of elopement, falls, malnutrition. You can’t leave them alone for a second bc they think they’ve got to go somewhere. Imagine, not being able to drive- how are you going to get your spouse loaded into a vehicle and to the appointments necessary? The confusion and fear when someone you don’t recognize is trying to undress you for a shower and then water feels painful when it touches your skin- the CNAs sometimes get the crap beat out of them during showers. Now imagine if you’re the elderly spouse of the patient.
They’re monitored for weight loss and provided a special diet to maintain it or if they can’t properly chew or swallow. Imagine if you’re unable to cook, or if you’re not able to be there due to work to encourage the person to eat or you’re not able to prepare the meals.
Imagine your loved one constantly calling the police because their hairbrush was stolen, or accusing you of stealing it. Being screamed at to “get out! Get out!” Because they don’t recognize you….and their memories or mood can change in a just a few minutes. There are times when I have to step away because it’s is best for the both of us- my presence is what is agitating them and I’m upset bc the situation is so stressful. And I understand why it’s happening, and have no memory of the person they were before the disease. I have the ability to remove myself from the situation and collect myself, but so many caretakers don’t have that ability. They’re stressed, they’re isolated, they’re confused, and they’re hurt.
I have early onset dementia from multiple concussions. It is scary to lose bits of yourself, your words, memory, and abilities. I feel sorry for my family and friends because I know I am different. I don’t want to become a burden and I don’t want to be lost in my own mind being angry like so many do. I would rather be remembered as happy. To all who have lost someone, my heart goes out to you. You are brave and wonderful.
@ElleKay – You WILL be remembered by those who know you as the person you once were because they love you. Please do not consider yourself a burden to them – that would make them feel their help is discounted. They will help you because they want to.
I was my mother’s caregiver for eight years. She had various chronic diseases and I helped manage all aspects of her healthcare. Her dementia really took over her life over the last two years. I lived 2,000+ miles from her, so it became a f/t job since I received next to no help from my three brothers. Sometimes I spent as much time with her as I did my own family. I became diligent in finding aides I could trust and interface with by phone at all hours of the day and night (3-hr time diff). They were lifesavers for me. My mom passed away in her home around Christmas last year. I was able to arrange that my bros. were present for her last 10 days, played her favorite music, cooked her favorite foods (although she could only eat a few bites, if that). Although the last year was especially hard on mom (and me) I wouldn’t have had it any other way. The care facility I tried just did not work out (pulled her after one month).
Sorry for going off. Please try to stay positive (easier said than done, I know), do the things you enjoy often, and be open to others’ suggestions if they offer to take you somewhere. Getting out of the house is immensely beneficial. You may not be the person you once were, but your loved ones WILL remember you as that… because you ARE valuable to them, not only in the present but in the great memories they have of you from the past.
ElleKay – what Crimson said.
And let your family know what you want. My mother and I planned her funeral while she was still more fully herself, and it was extremely comforting to be able to know I was carrying out her wishes. Same goes for her end-life care. She said that being dead didn’t bother her, it was the getting there that was scary. Being able to talk through that and what she wanted before the time came that she wasn’t able to tell us gave me the ability to care for her knowing that I was doing it on her terms.The eternal bubble of serenity knowing I was able to give her that remains the best gift she could have ever given me, and it has provided tremendous comfort as I grieve.
Strength and love to you and your family.