I’m sorry that you’re facing so much with your dad. We’ve had a long medical and emotional road with our son and understand what it’s like to feel overwhelmed. My advice is that knowledge is power, even when it’s sad or negative info, it allows you the ability to research, learn, make plans, and get as comfortable with the issues as is possible. This is your time to do all of that, it will bring a sense of comfort just knowing more and making plans for how to best deal with it. I wish you peace
Peggy, I am so sorry. Can you give me a briefing on what the situation now is for your Dad's care. Is he nearby or with you? What support does he have? Is he in care already? Have you noticed this descent on a real day to day basis? Again, sorry to hear this.
Sure. Dad is 91. He and my mom live an hour away. My youngest sister lives down the street from them. My other sister, the doc, is about 20 minutes away.
The diagnoses were done by a palliative care md through Kaiser, who came to my father’s house. My mother does most of the hands on, which sometimes includes accidents, but both she and dad refuse to talk about getting an aide.
I had noticed a decline probably for two years, but personally I thought it wasn’t dementia yet. He’s not wandering or screaming or picking fights about what happened in the mid 1970s. He’s not asking to go “home” as in his childhood home or country.
Peggy, one thing I have learned with seniors. They do not want anyone telling them how to stay safe or how to navigate their survival. Frustrating but, not pushing it, really gives them a safe place to tell you the challenges they are facing, that's when you can have a productive conversation about what they think will lesson the challenging situation. As long as they are cognizant it is the best route, speaking from experience on both sides.
Time is also something that benefits the situation greatly, go spend time just being with them. My 92 year old girlfriend has 5 children that are helping her, yet, they never just spend time and that is what she really wants from them. She is the 3rd 90+ friend that has shared that with me. They don't want to be a burden, so they say everything is fine and resist help because it is always offered on the fly and age hasn't dulled the ability to see what that really is.
I am sorry that your dad is failing and your mom is carrying the load, it's not easy to deal with when our parents mortality is brought to the forefront of life.
With 2 siblings, just maybe, you guys could help mom by taking her out for some pampering and have the house cleaned or whatever would lighten her load.
I know for a fact that she feels like no one will take care of her loved one like she can and it's true but, that's where taking care of her comes in.
So the mom and dad are going to make Peggys life miserable by refusing outside help. Sounds like Peggy is in for a lot of good times ahead with her stubborn parents.
I am finding that you tube videos of Teepa Snow have been very helpful to my understanding of what happens with dementia. I would recommend you googling her or finding some of her videos.
Welcome to the group. Here is where to start.There is plenty to gain information through caregiver support groups. Go to alz.org , find your state, then enter your zip code. Sometimes talking with others works better than typing in a chat.
Also if you locate that query icon at the top of this screen and type in specifics like Parkinsons, you will find info from many professionals. You now have 3 resources: in person support groups, this Forum, and the query box
I'm very sorry about your parents' challenges and all that you're going through.
Here's the thing, though: You've tried to help, and they've resisted. BUT.
Their refusal of aides is one thing, but your acceptance of it is another. You don't have to accept it. What you can do is work around it. For instance, have the palliative care people speak to them about getting more help, and ask them to keep mentioning it. In other words, wear down parents with voice of authority. Same thing with their doctors - ask them to recommend aides, housekeeping, whatever, EVERY single time they see them.
Your parents have worn you down. That's the truth of it. You are respectful and don't want to rock the boat, right? But you can and you should. Just don't let them catch you doing it. Furthermore, if they knew what a burden they're going to be to you, would they want that? Remind them that if they don't have paid aides, you and your sisters will bear the burden to the detriment of your families, work, mental health, physical health. It is the truth, and elders do not seem to have the insight to understand that.
You and family could have a meeting with the parents something like an intervention. Let them know that you are in charge, not them. Reassure them that you love them very much but cannot risk losing both of them due to the stress of taking care of each other in this crisis. Do they both understand that dad could die of renal failure in a year? Make sure they do. I took care of a friend with glomerulonephritis for about six months, and it is very hard. Bedpans, legs swollen to twice their size, repeated trips to the ER due to electrolytes imbalance and other things. I am not a nurse. Friend did recover but she was only 30, and I was a young 50 well able to do the work. But with your mom.....she can't do this.
Also, don't be so ready to jump in and handle every little crisis. Garbage disposal broke? Sorry mom, can't deal with it for a couple of weeks. Here's the number of a plumber. Dad needs more Depends? Sorry mom, I'll order some and they'll arrive on Tuesday. Until then, look in the garage where I stored a few extra. Next time give me more warning.
If they want to be independent, make them be independent.
As for dad not having dementia, the signs that you mention he doesn't have? Those are some of the big ones, but it evidences in other ways. I'm willing to bet he has some dementia going on based on his age. His resistance to more help and his willingness to let mom go on taking care of him show lack of insight into their problems, which is another sign.
For you, the sadness happens first. The resentment comes later. Again, I'm sorry. Please keep us updated. We care.
My in laws also called yesterday. Latest news is that fil is now on oxygen and now has a dilated colon that may or may not require surgery. Before that was the removal of half his small intestine. Before that it was four post stroke brain operations and three heart ops. Before that was copd. Before that the removal of a kidney.
He rescinded his dnr and wants to go full code now, as the doctors have already saved him multiple times…
Oh Peggy, I am so very sorry. You know that my mom had Parkinson’s disease and dementia. It’s really hard.
As you know, Parkinson’s disease is progressive and meds only help to control the symptoms. There is no cure. It is devastating to watch a parent decline.
They grieve for the life they once had. We grieve as well.
Sending many hugs and all my best wishes to you today. You certainly have my support.
I am very sorry for you, Peggy. Speak with dad's doctors about medications to slow the progression of both diseases. I know in some cases depending on the stage meds are available.
Primary can send over OT to access the house for safety issues. They can tell you what is needed & where to find it.
Try to get some advice about his care now & for the future so you can be prepared.
Not sure what can be done but focus on his quality of life as well as guarding your health.
Hopefully a DPOA is in place, living will and financial issues in place to relieve dad of these issues.
One day at a time and remember everyone moves at their own pace.
I know a little about Parkinson’s but not about dementia. My husband was diagnosed with Parkinson’s in 2015, probably started 2 years before that. Really, first 5 years not even noticeable although he took levadopa. PD progresses rather slowly, if dementia is still not deterring Dad from his independence and doing what he wanted to do in life, my only advice would be do it now! I am glad we ignored this disease for 5 years, although we were not in denial. But we lived the best possible lives! Now, either PD or other conditions will probably require adjustments to our lives.
Fawnby has excellent advice about addressing your parents accepting help . The only thing I would add is don’t wait too long to try Fawnby’s methods . I know your head is spinning , but the longer it’s not addressed the more they will say we are ( or have been ) doing fine . For your own health and sanity , please don’t prop them up with a false sense of independence .
It’s extremely lucky for your dad, that his PD was that unnoticeable, that it wasn’t diagnosed until now at 91. That means his physical symptoms (tremors, etc.) can’t be that bad at 91, otherwise he would have been diagnosed with PD a long time ago.
There are always exceptions, but normally one starts with PD symptoms around 75. The first tremor shows up.
Keep in mind that 80% of people with PD will eventually get dementia. So it’s not surprising your dad has started to get dementia.
At 91 anyway, for any human being, it’s not surprising to start having dementia, it’s rather the norm. At first it starts with just some memory problems. For some people, that’s all dementia will ever be: just some memory problems.
It’s rather exceptional for any human being to be 91 without any dementia.
I found out about mom’s Parkinson’s disease years ago when she was having seizures. A doctor in the hospital who was treating her seizures said to me, “Your mom has Parkinson’s disease.”
I was shocked because mom hadn’t said anything to me. In the beginning I think it is easy to not notice the slight changes. I think mom thought that the subtle changes were due to ordinary aging.
The doctor told me that she could tell because mom was shuffling her feet. She made an appointment with a dermatologist and she started on meds. Mom’s Parkinson’s disease was very slow progressing in the early stages.
It wasn’t until much later that her symptoms became more pronounced.
My sister the doc says that my dad’s shuffling was a sign to her and his palliative care doc that he may have Parkinson’s. I haven’t noticed rest tremors or other signs, though.
I know it is a sudden punch to the gut. Turns your life and expectations around and begins a period of denial, grief and anger even though the person is still alive. Losing a parent by inches is very hard and it depends on what your relationship was like prior to diagnosis how you will process this. I think you don’t know what to say because you are still in shock. Give yourself time to feel all your feelings. So,sorry that you joined the club that nobody wants to join.
One thing that’s atypical about this moderate dementia diagnosis is that my dad isnt reverting back to what he was in the 1970s, which was my way or the highway on all things. After reading so many stories, I had figured it would be that way should he reach level 5.
My mom’s dementia took away her narcissistic attitude, her annoyance when people didn’t kowtow to her wishes and a few other undesirable traits. It was surprising.
I guess my own dad was similar. He got diagnosed at age 91 as well, though looking back it had probably been noticeable for a couple years before, but in any event later in life compared to many. He lived a couple more years at home with my mom then went on a pretty sharp decline for three months in facilities and passed. I guess it is never easy, but in my dads case he didnt have it for years as many did and his hard part was a relatively short time as well though at the time those three months seemed like a lifetime.
My dad was also not typical in that he did not exhibit many of the symptoms that many have. When he was in care facilities, the nurses remarked he was so mild mannered and easy to care for.
Peggy sue i second what daughterof1930 had to say about information being power. My husband's initial diagnosis of a rare life threatening illness threw me into a panicked spiral. Little was know about it. Doctors were not aware of the illness and were, in general, unable to provide me with answers. That was back in 2021. Since then, I have become an avid researcher and in more than one case, know more about hereditary transthyretin amyloidosis polyneuropathy (hATTRv) than many PhDs. When my research revealed that it also affects the heart, I was able to inform my husband's Primary care physician who immediately referred us to a cardiac specialist. Similarly, he was recently diagnosed with Parkinsons. I read all the existing information I can on it. I have learned that many of the symptoms of parkinsons, overlap with his hATTRv. I also learned that late onset Parkinsons patients are prone to developing alzheimers. Armed with all this information, I am in a much better position to advocate for my husband. Yes, learn as much as you can. I do caution you about the amount of bogus information on the Internet. If you read white papers, or journal articles, check to make sure they are peer reviewed and the publication is legitimate. Also, on your journey you may meet a fair amount of doctors who have no clue about the specifics of your husband's ailments. Having researched information my 'bulls**t radar antenna' goes up when I'm getting brushed off. My best to you and your dad on this journey.
My father’s diagnoses are, fortunately, fairly uncomplicated...though I was the resident expert on mil’s rare condition, even explaining to her in a way even her docs could not.
With my dad, it’s simpler. He has entered ckd S4, after all. He won’t be having dialysis at S5. My sister is ok with putting him on Parkinson’s meds to see if his gait improves.
PeggySue, I'm so sad to read about this diagnosis and all the other burdens you've been attempting to manage.
My stepFIL had Parkinsons. He always had restless legs at night and often acted out in his sleep. Just putting this out there so that others can be aware this is a red-flag for PD in the future.
PD is also often associated with Lewy Body dementia. This can include visual hallucinations, which is not part of "typical" age-related dementia. Just something else to be aware of.
If I remember correctly you are of Asian heritage, so maybe cultural pressures are at play in the expectations. Remember that often there are no good solutions, only "least bad" options. I know you are and will do your best. Just don't burn yourself out. Please remember to make yourself a priority and do lots of self-care. (((hugs)))
Be kind to yourself while all this sinks in 😔
Again, sorry to hear this.
Dad is 91. He and my mom live an hour away. My youngest sister lives down the street from them. My other sister, the doc, is about 20 minutes away.
The diagnoses were done by a palliative care md through Kaiser, who came to my father’s house. My mother does most of the hands on, which sometimes includes accidents, but both she and dad refuse to talk about getting an aide.
I had noticed a decline probably for two years, but personally I thought it wasn’t dementia yet. He’s not wandering or screaming or picking fights about what happened in the mid 1970s. He’s not asking to go “home” as in his childhood home or country.
Is Robert (mentioned in your profile) your FIL? Just want to be clear.
Time is also something that benefits the situation greatly, go spend time just being with them. My 92 year old girlfriend has 5 children that are helping her, yet, they never just spend time and that is what she really wants from them. She is the 3rd 90+ friend that has shared that with me. They don't want to be a burden, so they say everything is fine and resist help because it is always offered on the fly and age hasn't dulled the ability to see what that really is.
I am sorry that your dad is failing and your mom is carrying the load, it's not easy to deal with when our parents mortality is brought to the forefront of life.
With 2 siblings, just maybe, you guys could help mom by taking her out for some pampering and have the house cleaned or whatever would lighten her load.
I know for a fact that she feels like no one will take care of her loved one like she can and it's true but, that's where taking care of her comes in.
Great big warm hug, this is never easy.
Also if you locate that query icon at the top of this screen and type in specifics like Parkinsons, you will find info from many professionals.
You now have 3 resources: in person support groups, this Forum, and the query box
Here's the thing, though: You've tried to help, and they've resisted. BUT.
Their refusal of aides is one thing, but your acceptance of it is another. You don't have to accept it. What you can do is work around it. For instance, have the palliative care people speak to them about getting more help, and ask them to keep mentioning it. In other words, wear down parents with voice of authority. Same thing with their doctors - ask them to recommend aides, housekeeping, whatever, EVERY single time they see them.
Your parents have worn you down. That's the truth of it. You are respectful and don't want to rock the boat, right? But you can and you should. Just don't let them catch you doing it. Furthermore, if they knew what a burden they're going to be to you, would they want that? Remind them that if they don't have paid aides, you and your sisters will bear the burden to the detriment of your families, work, mental health, physical health. It is the truth, and elders do not seem to have the insight to understand that.
You and family could have a meeting with the parents something like an intervention. Let them know that you are in charge, not them. Reassure them that you love them very much but cannot risk losing both of them due to the stress of taking care of each other in this crisis. Do they both understand that dad could die of renal failure in a year? Make sure they do. I took care of a friend with glomerulonephritis for about six months, and it is very hard. Bedpans, legs swollen to twice their size, repeated trips to the ER due to electrolytes imbalance and other things. I am not a nurse. Friend did recover but she was only 30, and I was a young 50 well able to do the work. But with your mom.....she can't do this.
Also, don't be so ready to jump in and handle every little crisis. Garbage disposal broke? Sorry mom, can't deal with it for a couple of weeks. Here's the number of a plumber. Dad needs more Depends? Sorry mom, I'll order some and they'll arrive on Tuesday. Until then, look in the garage where I stored a few extra. Next time give me more warning.
If they want to be independent, make them be independent.
As for dad not having dementia, the signs that you mention he doesn't have? Those are some of the big ones, but it evidences in other ways. I'm willing to bet he has some dementia going on based on his age. His resistance to more help and his willingness to let mom go on taking care of him show lack of insight into their problems, which is another sign.
For you, the sadness happens first. The resentment comes later. Again, I'm sorry. Please keep us updated. We care.
He rescinded his dnr and wants to go full code now, as the doctors have already saved him multiple times…
As you know, Parkinson’s disease is progressive and meds only help to control the symptoms. There is no cure. It is devastating to watch a parent decline.
They grieve for the life they once had. We grieve as well.
Sending many hugs and all my best wishes to you today. You certainly have my support.
Primary can send over OT to access the house for safety issues. They can tell you what is needed & where to find it.
Try to get some advice about his care now & for the future so you can be prepared.
Not sure what can be done but focus on his quality of life as well as guarding your health.
Hopefully a DPOA is in place, living will and financial issues in place to relieve dad of these issues.
One day at a time and remember everyone moves at their own pace.
My husband was diagnosed with Parkinson’s in 2015, probably started 2 years before that.
Really, first 5 years not even noticeable although he took levadopa.
PD progresses rather slowly, if dementia is still not deterring Dad from his independence and doing what he wanted to do in life, my only advice would be do it now!
I am glad we ignored this disease for 5 years, although we were not in denial. But we lived the best possible lives!
Now, either PD or other conditions will probably require adjustments to our lives.
The only thing I would add is don’t wait too long to try Fawnby’s methods .
I know your head is spinning , but the longer it’s not addressed the more they will say we are ( or have been ) doing fine . For your own health and sanity , please don’t prop them up with a false sense of independence .
There are always exceptions, but normally one starts with PD symptoms around 75. The first tremor shows up.
Keep in mind that 80% of people with PD will eventually get dementia. So it’s not surprising your dad has started to get dementia.
At 91 anyway, for any human being, it’s not surprising to start having dementia, it’s rather the norm. At first it starts with just some memory problems. For some people, that’s all dementia will ever be: just some memory problems.
It’s rather exceptional for any human being to be 91 without any dementia.
(((HUGS))) again.
I was shocked because mom hadn’t said anything to me. In the beginning I think it is easy to not notice the slight changes. I think mom thought that the subtle changes were due to ordinary aging.
The doctor told me that she could tell because mom was shuffling her feet. She made an appointment with a dermatologist and she started on meds. Mom’s Parkinson’s disease was very slow progressing in the early stages.
It wasn’t until much later that her symptoms became more pronounced.
Losing a parent by inches is very hard and it depends on what your relationship was like prior to diagnosis how you will process this. I think you don’t know what to say because you are still in shock. Give yourself time to feel all your feelings. So,sorry that you joined the club that nobody wants to join.
One thing that’s atypical about this moderate dementia diagnosis is that my dad isnt reverting back to what he was in the 1970s, which was my way or the highway on all things. After reading so many stories, I had figured it would be that way should he reach level 5.
My question is, has anyone else experienced this?
My dad was also not typical in that he did not exhibit many of the symptoms that many have. When he was in care facilities, the nurses remarked he was so mild mannered and easy to care for.
I am sorry for your situation, it is always hard.
My father’s diagnoses are, fortunately, fairly uncomplicated...though I was the resident expert on mil’s rare condition, even explaining to her in a way even her docs could not.
With my dad, it’s simpler. He has entered ckd S4, after all. He won’t be having dialysis at S5. My sister is ok with putting him on Parkinson’s meds to see if his gait improves.
My stepFIL had Parkinsons. He always had restless legs at night and often acted out in his sleep. Just putting this out there so that others can be aware this is a red-flag for PD in the future.
PD is also often associated with Lewy Body dementia. This can include visual hallucinations, which is not part of "typical" age-related dementia. Just something else to be aware of.
If I remember correctly you are of Asian heritage, so maybe cultural pressures are at play in the expectations. Remember that often there are no good solutions, only "least bad" options. I know you are and will do your best. Just don't burn yourself out. Please remember to make yourself a priority and do lots of self-care. (((hugs)))
I’m Asian, but of us three, I am farthest away and least present.
I posted a message to you on the your other link that MD referred to.
Anyway, I will tell you on this thread too that I am very sorry for your loss.
There aren’t any words that can truly express what you are going through right now.
It’s a very difficult time. Please take care of yourself and acknowledge your feelings.
Take time to grieve and heal. Your father will live on in your heart forever. I still miss my dad and he died in 2002.
Grieving is a complicated and individual experience for each of us. It’s a journey of many emotions.
Sending love, hugs and support your way today.