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.
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 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.
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.
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.
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.
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.
Be kind to yourself while all this sinks in 😔
Is Robert (mentioned in your profile) your FIL? Just want to be clear.
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.
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.
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.
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