The last time I remember us having a real conversation was in 2016. It was when she started to begin to fully fade away. She was born in 1938. She had early onset dementia in 2010 or so.
I miss talking to her. But, overall over everything, I miss having a say over her care. It rips me to bits that I am not the POA over her, but my brother was selected. He is a mindless information machine. You say something to him, he gives you an answer. We have different perspectives of her healthcare and it is just tearing me apart. I feel like I should have POA, but he is more distinguished than I am. I have to win over the family to take back POA and have started the process tonight in emails. But, it just tears me to bits. I know what my Mom would want and I am the closest to her.
So, take this moment and maybe be kind to your Mom if you can. Hug her. Embrace the moment. I am a part-time caretaker for my Mom and I would do anything for her. I love every moment we are together, but it just tears me apart thinking she could be sitting in memory care staring at a wall somewhere because my brother thinks that's the best place for her.
Bro, I will sacrifice all of my career just to be with her and let her hear music she likes and to watch the birds and play with the new kitten I got her.
You want sacrifice? I have sacrifice.
Stay strong man! Goes to show the important things in life. We got caught up in our career so much that we forget about other things. I'm sure your mom would be very proud of you and all you have done.
Thanks bro - yeah I have a lot of things that I called achievements (like becoming an Ironman) which I achieved after she faded, but then I always come back to the realization that my only achievement needed is to be there for her. My petty victories don't mean much.
Our presence and living in the moment is everything.
Cheers
Thanks for your support.
I feel for you, bud, and I hope things go well. I have some relatives with early stages of dementia and I cherish every moment I can spend with them.
Thanks Mister Orangutang - I appreciate it.
My mom and I are so tight - we just get each other. Luckily dementia didn't change that - we are still on the same wavelength.
I have nothing to say, but I wish you strength and good luck on everything.
Thanks #130
Hey man
I can't add much but i'm sorry to hear about your mom. It's very heartwarming to hear how much you love her and I pray that you find happiness in your life.
God bless
Thanks yeah even now when everything in my life seems so complex, I just spend a bit of time with her and begin to understand this life we live. Its all about being there for others in all ways. In life and business. Doing the best you can for others. Its so simple.
1986 - Annapolis with Mom (I'm the blonde)
bro (1986 grad) and sis (1985 grad)
2020
Would it really be an Isaiah_53_5 post without the sweet selfies? All jokes aside, stay strong brother. It must be incredibly rough, but I know you and your mother will weather the storm. I can tell by a couple of photos you must have some really great memories with her, and even if she doesn’t remember so, she loves you and she’s proud of you. Be strong for her; we’re rooting for you big dawg.
Beautiful relationship you have. She looks wonderful.
Dementia is tough, but it’s also a mindset thing for the family. My dad developed dementia after suffering a stroke a year after I graduated college (he was an older dad; I was from a 2nd marriage). Dementia is the umbrella term for Alzheimer’s, Parkinson’s, vascular dementia, etc). Even before the stroke he was acting different (already has MCI, mild cognitive impairment) - took a divorce from my step mom pretty bad (she prob saw the writing on the wall) and my advice to him to get a girlfriend led to gold diggers and other trouble (I was a college student, though I had wise advice).
My dad died approx 8 years after that stroke. After the heart surgery in Year 1, something was noticeably different. He was foggy. Thought it was the shock of the bypass surgery but never went away.
Year 4 was urinary incontinence. Year 5-6 was fecal. The first time you see feces on the ground, that it’s a bit of a shock, but then you put your big boy pants on and take care of your dad like he took care of you. Year 6 was when dad broke his hip right before Christmas when I was supposed to visit, so the entire time I was with him at the Rehab Center. Could hardly walk and was wheelchair bound. Years 7-8 was his last years, but really great years as I moved him from Hawaii to San Francisco and he lived in assisted living and I visited him often and took him out to eat at restaurants. I would change his Depends in the Men’s restroom. It’s all good.
With advanced stage, dysphasia is a problem (trouble swallowing since the muscles in the throat and esophagus need to be highly coordinated and with cognitive decline, things are not perfect anymore, so food goes into the lungs and you choke), with pneumonia something to watch out for. There are ways to relive dysphasia like thickening fluids for drinking and purée foods.
The mindset this is important. I’d fly back home to Hawaii and stay at dad’s condo on my visits. Him and I shared the bed. Just makes me think when my 2 year old son sleeps next to me that one day the roles will reverse.
I learned a lot about how and where my dad was born and grew up. I learned more about how my family used to farm sugarcane on Maui and even visited the village (now just weeds, nothing left) and chronicled my journey on YouTube.
I never stopped trying to get him to walk and rehab. I didn’t really buy into palliative care until the end; but always tried pushing. I think this is a mindset thing for I dub the younger generations encountering the mortality of parents (in the age of great technologies and hope), we think we can fix things, extend life.
I’ve noticed a few how to thank your parents threads on WSO and I’m sure you will feel similar when the time comes to help them.
There was challenges. Sibling, my marriage, some envy but not really of my peers living carefree lives and spending quality Adult time with their parents (I never had that; by the time I was mature enough or took time to notice, dad had dementia).
The time spent with dad, I always told myself I am going to miss him. Dementia might make someone thing that person’s mind is gone, but to the people closest to or open minded, there is a lot of that person left like their personality. I got over him not remembering me as his son. Calling me his friend. I really miss those days nevertheless. Precious moments. Moments of clarity. Just wanted him to be safe and around people who were kind.
plan for long term care (while your parents are healthy, consider long term care insurance - not the end of the world if don’t have, it can be expensive and things like laser eye surgery or angioplasty could make you ineligible, check I could be wrong but my dad’s rejection letter stated that 20 years ago.
talk about end of life care with your parents, get a living will, power of attorney for legal and medical (these are separate), do not recessitate DNR, burial or cremation, location of cemetery, talk about finances (a lot of times parents don’t want to worry the kids, but you find out there’s a second mortgage on your childhood house and things are not sustainable).
videos, photos, spend time with them. Love them, thank them.
breaking a hip + dementia is a bad combination because dementia reduces the efficacy of rehab. Lack of end goal reasoning. Falling is inevitable however.
you can actually see the world through the eyes of someone with dementia. Anyone can if they are around someone with it and follow the patterns.
I can go on and on about this.
Thanks @odog808" for the many good points.
I have the older parents as well, as I was the baby in the family and Mom was 44 and Dad 46 when I was born.
I have 3 other siblings, but have been there the most as geographically, my parents and I live in the same city. I've put in significant work in taking care of my parents as I feel they have done everything for me. I'm committed to staying in this city in the south until this chapter is over then plan to head back to Cali and then back to NYC eventually.
I feel you. My dad was 45, my mom was 36 when I was born (mom died of cancer at age 40). I have a couple of friends’ dads older than mine when they were born. Anyways, kudos to you for helping them out and spending time.
My friends from Hawaii who live on the Mainland are just entering this phase of life where they have to worry about their parents.
The options are 1) to move home (to Hawaii which isn’t bad, but might set them on a different track from their current career); 2) live apart, “helicopter” in when needed; 3) move them up to where they are living (easier for me because dad’s social circle shrank to just my sis and me) and I had a good job.
As I mentioned in the dementia timeline, there are different stages, and really I was “buying time” with various senior care services to keep him in Hawaii until moving him up to me in SF.
Shout out to the notion of living in the same city as your parents. That’s something I wish was more common place as it can be a blessing.
Your Mom is very lucky to have you in her life. Lots of respect and admiration towards you and the way you have stepped up to help care for her.
Thanks Johnny Drama. In one sense, when life seems to big to bear and I visit her, things all just seem ok.
My sister told me today that she feels I am the light of my Mom's life. It is significant. I've learned a lot about life through her - and all in all, when it comes down to it - its about the time we spend with others.
You know, seeing somebody there but 'not there' is the worst. Grandma on dad's side had to go into assisted living in '98 when my grandfather died, but stuck around until 2014. She had a number of displeasing but non-fatal problems.
Mom's mom was the paragon of health, and she actually fibbed to her mahjong group to make her a decade younger than she was. (they believed it, and we would've as well if we weren't family) She was diagnosed with stage 4 pancreatic cancer, and kicked the bucket after 6 weeks. That's how I want to go. her khakis had the perfect crease until the end.
I don’t have personal experience with dementia, but it’s one of my greatest fears for my parents as they get older. I’m not sure if my brothers and sisters could handle it.
I hope you find comfort in knowing that your doing the right thing, you deserve it. It’s often the darkest times in life that teach you the most.
This thread is beautiful, thanks guys. @Isaiah_53_5" amazing pictures, @odog808" appreciate the detailed and loving story.
Thanks monkey_brah
sorry to hear about this. i should probably take care and be kinder to my mum even if she is a difficult woman.
do you mind expanding a bit about the care your brother insists on providing to her and why you think its bad? dont know anyone with dementia so not too clued up on the ins and outs.
I was against putting her in memory care where she might be locked in with Covid rules and not able to be outside versus living in an open space not in memory care with family able to visit and possibly a full time live in caregiver. Latter possibly being more expensive.
We had a family discussion though and decided to go with my wishes which was the latter, so I don’t need the POA anymore, provided that we don’t disagree on future care.
To give you an idea on what senior living care means, here is an overview at one facility.
In a low COL city:
Independent living: $4K month - not much assistance but separate condos in the living facility - not confined and can come and go as you please. 2x day meals delivered.
Assisted living: $5.5K per month roughly - increased level of care, not independent living, with Covid many are locked down and cannot go outside or see loved ones ever until they die.
Memory care assisted living: $7K per month roughly - even more care, help with hygiene usually required. Locked down until they die with Covid rules in many places.
The most expensive would be Independent living + a live in caregiver. I already provide part-time support as a caregiver, but I can't be there all day all the time. It would be full salary for a live in caregiver + the $4K per month independent living costs.
We finally agreed on the latter if my Dad dies (independent living + live in caregiver + when I can help) - he is the current live in caregiver. Important thing was that we iron out these details in the family in advance.
I was initially pushing for the POA over my mom as I thought my views may differ from my brother, but as we agreed on what we all thought was best, my brother can keep the POA. I just didn't want her to get locked in assisted living memory care, which is now agreed by all in the family that we don't want her to go there to die without family support. Covid complicates things - you can't just send your elders to senior living anymore without them becoming trapped until death.
wow that's heavy. Good luck man.
Thanks bro
Bro so sorry to hear that. My mom's mental state went down the drain during college and I had to pick up her bills and stay at home as a partial caretaker my senior year, its like a ghost of her actual self at this point.
Its painful and not many realize the daily emotional fatigue it can cause. Praying for you man.
Thanks bro - appreciate it.
Reading all the stories in this thread, I think I'd rather go out with honor than be such a burden on my (future) children. I'm not talking about anything violent, but just tidying everything up at home, kissing my loved ones, and going into the forest on a cold winter evening to watch the sunset one last time. Death by cold is said to be the most peaceful one.
Yes, but statistically 90% of your healthcare costs are in the last 10% of your life.
This is a common answer I hear. The hard part to that is people want to live another day. Maybe another 6 months to see if things get better. Maybe catch another season of college football. Maybe another year to see a child get married. Maybe another couple years to enjoy grandkids. It is easier to say I want to be gone some far off distant future half a century (50+ years) from now after what you think will be a good life. It’s different if the time to pass on is today. Again, not a wrong choice, just something I hear from folks.
Again, it’s mindset for dementia, which is a journey. If your life is in order, you have a great family, money for care is no problem, you’re not in pain, your dementia and slowing down shouldn’t scare you as much as you fear. You just live in the moment more. I’ve come to the realization and acceptance of this one day for me, and it’s just a part of life. I’ll be my jolly self and win all the games at the senior living community, and eat all the avacados they have (why avacados because my dads roommate would eat one with dinner all the time). Feed me sushi once in a while and I’m good.
Yeah it's also really easy for you to make that machismo statement at this point in your life as a young healthy person. As you get older, especially when you have dementia and your faced with your mortality in more of a tangible sense, it obviously becomes more difficult to have that sort of perspective.
@Isaiah_53_5" Thanks for posting something so honest and candid, especially on WSO. My grandmother (mom's mom) had Alzheimer's when I was in my early teens. I don't remember a lot of it but I do remember how much my mom cherished spending time with her mom, either at her house or ours, and even if she didn't really remember who she was. Keep making the most of your time together and be sure to take the time to be present and really internalize and memorialize those memories so you can keep them with you the rest of your life. As you alluded to, life is short and you won't look back on the time you didn't spend in the office when you're old, but the time you didn't spend with family and friends, so keep putting family first. Thinking of you and wishing you strength through this time.
And @odog808" thanks for sharing your story as well, and I'm glad to hear you were able to spend quality time with your dad when he needed you most. I'm sure he was a great guy.
Thanks RealEstateNerd for sharing your experience too
Hang in there bro. We rarely see emotional stuff like this on WSO.
Thanks, homeslice.
Yes, its a brave new world out there.
I'm so sorry to hear about this Isaiah. Dementia is one of the most difficult health problems to handle from the family's perspective. My grandfather recently passed from Alzheimer's and even though he had forgotten our names, he was still able to feel it to some degree when people around him cared for him all the way up to the end. Please continue to show her the compassion no matter how faded away she may seem, and know that if she was able to convey her appreciation and love for you she absolutely would. It just becomes insurmountably difficult to do so through the fog. My best wishes to your mother, you, and your family.
I'm really sorry to hear this mate.
Looked after my grandmother for 2 years while she was in this situation. I don't know if my mind was playing tricks but if felt like her normal self was always in there somewhere buried behind the dementia.
Every now and then I got glimpses of this when I looked in her eyes and I knew that some part of her recognised and appreciated what I was doing for her.
Your mum is still there and she is definitely comforted by the fact that you are there for her and you care even though it might not seem like it.
Trust me that after she passes you will appreciate every minute you spent with her and she definitely appreciates you being there now at some level.
Thoughts and prayers to you my friend, and please make sure you are looking after your own mental health. Looking after someone with dementia is more mentally grueling than doing an Ironman, having done both myself.
Delete
It is very sad when people, especially our relatives, get sick.
Bless up Isaiah. I am here if you need a talk brother. You can talk to my mother too if you want a mother to talk to you. Stay strong man win back the POA.
Making a grown man cry at his internship. God bless bro I hope things get better.
Thanks bro yeah family is everything - she is doing pretty well lately. Memory is gone but spirit is still there and she calls me ‘her favorite’. She is in an Alzheimer’s/ Dementia special care unit now.
Absolutely brotha. All my tattoos commemorate my family. I miss them so much.
Isaiah,
I just wanna wish you the best and send my thoughts and prayers for your mum. I went through something similar with my Nana when I was a little kid; there was an accident that cost her much of her mental state and the ability to walk, resulting in special care from nurses and my mother. We all love you, guy, and we're praying for you and yours. I would be glad to be of any assistance in talking about things if needed. God bless.
Thanks bro
This takes balls to share. My only advice is to cherish the good rather than dwell on the bad.
I fully support the previous comment. He wrote everything correctly.
This disease occurs due to organic changes of an atrophic nature in the brain tissues and a sharp acceleration of the natural degenerative processes in them. The causes and exact mechanisms of dementia are not yet fully elucidated by modern science. It is known only that the disease leads to the accumulation of certain classes of proteins and amino acids in neurons, which block the transport processes within neurons, disrupt inter-neuronal connections and lead to the mass death of nerve cells. Dementia caused by Alzheimer's disease progresses most rapidly. I would recommend Cincinnati home care.
Stay strong and I will include your mom in my prayers.
You know, see and feel what's most important.
It's not money, it's not prestige, it's time.
Time is THE ASSET. Time is all we truly have "to spend" with one another and on one another.
My kid brother died this June. Tomorrow he would have been 46. And all I'll ever have of him are past memories.
Our mom is 83 and I am taking a vacation day from work for us to spend the day together as she sees fit. I have no biological children of my own, but to watch my mother mourn my sibling, there is truly no comfort that I can give her. The one thing I want in this life right now is to give my mother solace over the most unnatural thing there is, losing a child. Losing a spouse, you are a widow/er. Losing your parents, you might be called an orphan. But losing a child has no word.
But tomorrow if she wants to go for pedicures, fine. If she wants to sit in the garden plot that her and my brother tended and direct me to weed and water, fine. Whatever she wants is fine with me. I prefer a day like tomorrow than the days when I go with her for a PET scan or a bone biopsy to see where her multiple myeloma is at. But I'll still take a doctor's appointment with her over not spending time with her in some way, shape or form. I'll take making another memory with Mom, regardless of the setting.
Do whatever you can for Mom, remember you'll always think you could have/should have done more. I know I wish I had had more time with my brother. But don't spoil your mindset with the frustration over what your brother is doing. Concentrate on the good fight, be Mom's warrior as best you can.
I hope and pray that you get to continue and enjoy your Mom, despite the dementia. My uncle has dementia and while we range from talking weekly or monthly on the phone or in person, it's going on 15 years since I really had a conversation with him. It's sad on the one hand to see him so fixated on such a limited numbers of topics [reciting poetry of his favorite poet, discussing contemporary Bollywood films and old school Hollywood films, and the current Yankees - those are pretty much the available topics], and yet, 90% of the time, he's an incredibly happy person. We've seen dementia in my family where the persons became violent and that's heart-breaking, the person you knew is truly gone, on a whole other level.
Stay strong, enjoy your time with Mom. Sending you both love and light, blessed be.
Thanks for the reminder bro - good timing 🙌🏻👊🏻
I’m sorry to hear this, my brother. I wish the both of you well. I wish you the strength to keep fighting until you get what’s right.
Hey bro as somebody who was a full-time caretaker for my grandma (raised me like a mom), I know what its like to watch the mental deterioration. It really stripped away a part of me because I was watching this woman who I love with all my heart fade in front of me and there is nothing I could do about it. I can't tell you if/how it will get better because I am still trying to figure that out myself. But god bless bro, I'm praying for you and your mom.
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