Dementia?

[nw6675]

I am sorry as I feel like this has been discussed many times, but I am just distraught this afternoon. My sis and I have noticed that my mom's comprehension and memory appear to be declining. Pretty quickly and in significant ways. My dad doesn't seem to notice or does not give any indication to us.

My parents don't ever want to bother or worry us, so we would not know if anything has been discussed with a doctor. We know we can't talk to my mom, but we can NEVER get him alone to get a feel for what, if anything, he has noticed.

Does anyone have any advice on how you have handled the early stages of what seems to be dementia. They are otherwise very healthy, active, and independent.

 

[kymom99]

Am I correct that your parents live in a facility? If so, do they offer “memory care”? There really isn’t much you can do other than make sure she is safe and taken care of. I imagine your dad doesn’t want to acknowledge it, if he in fact notices. If he were to confirm what you are noticing, what would you want to have happen?

 

[Pea-n-Me]

I would probably start with a visit to her PCP, followed by a referral to a Gerentology team, to see what tests, possible medications, or support she needs. It may be a little difficult if your Dad isn’t cooperative and you can’t really speak about it.

 

[RAD]

#1 is to get a medical/mental power of attorney ASAP. I say that based on what I went through with my mother when she started down the dark road. She never thought that there was a problem and after she could no longer live alone we needed to us it to get into a support facility.

 

[QueenIsabella]

Getting a doctor's evaluation is paramount. Maybe offer to take your mom to an appointment, and going in with her? Can you use the argument that it's for your peace of mind that everything's okay?

Declines can be slow or swift, depending on the specific type of dementia. With our mom, we noticed some cognitive decline, but there was a lot of masking on her part. Plus, a few years before, she had moved further away from my sister, so Sis wasn't stopping in as often. In our case, it actually took a psychotic break to trigger the hospitalization that led to a diagnosis. (I don't recommend this approach!). For us, Mom was diagnosed in September, and died the following May, so her decline was very fast.

 

[nw6675]

Am I correct that your parents live in a facility? If so, do they offer “memory care”? There really isn’t much you can do other than make sure she is safe and taken care of. I imagine your dad doesn’t want to acknowledge it, if he in fact notices. If he were to confirm what you are noticing, what would you want to have happen?

No, they are healthy and independent. It is just her cognitive abilities that are noticeably deteriorating. We thought it was the pandemic at first - boredom and isolation. Maybe depression. But the confusion and memory loss has increased and becoming problematic.

I think we are right at the point in life where you realize your parents are not invincible and some tough things will be happening. At this point, I really just want my dad to say he has noticed it. They are both stubborn as all get out, so him acknowledging it is half the battle

 

[kymom99]

No, they are healthy and independent. It is just her cognitive abilities that are noticeably deteriorating. We thought it was the pandemic at first - boredom and isolation. Maybe depression. But the confusion and memory loss has increased and becoming problematic.

I think we are right at the point in life where you realize your parents are not invincible and some tough things will be happening. At this point, I really just want my dad to say he has noticed it. They are both stubborn as all get out, so him acknowledging it is half the battle

Oh so they live in their home? I had your post confused with a previous post. My apologies. In that case I would be worried too. Maybe you two can keep a log together of specific incidences where you feel like she is confused or forgetful. Then make an appointment and tell her she is going to the doctor. And don’t take no for an answer.

I have a friend who is only in her 60s. She admits to having memory issues and she often forgets to come to gatherings. But she gets very defensive when her daughter tries to talk to her about it. So I get where you are coming from.

 

[disykat]

Having been through this, my main advice is to "double team" your parents. Sister distracts mom while you insist on taking dad on an errand, etc. Go in with a plan and insist. Even when we got my parents apart, they were loyal to the core and it was hard to get info. Eventually we went to telling dad "I'm worried about mom" and telling mom "I'm worried about dad" to get them to cough up a little more info and make inroads into making long term plans. While it can feel like a bit of game playing, you really do need to strategize and find ways to get them to let you in. Another strategy I used was "x and I are making our plans for the future and we need some advice. What are you doing about x?" Use this to ask about medical proxy, POAs, wills, insurance, etc.

My dad had dementia first, so although she wouldn't really admit it until she truly knew the jig was up, my mom did start to give me more info on the logistics of banking etc. She understood "If something happens to you I need to be able to take care of dad." I used "Mom needs help with the housekeeping, etc." to dad to get him to agree to getting caregivers, etc. Every time he got mad that there were people around we threw mom under the bus - "Mom needs help." etc. We reassured mom regularly that we knew she was fine (not really) but we had to make dad think the help was for her to get him to agree, etc. etc. etc. As dad got worse, he seemed at least willing to admit that "mom" needed help, so as he acquiesced a bit mom became more willing to work with us.

Best wishes on this journey. I agree with RAD that #1 is to get as much of the logistical stuff dealt with ASAP. We had the problem in that my parents lived in a small town where they were well known and respected and dad was still fairly youngish and could fake it around town for a beginning part of his dementia journey. I'm pretty sure their lawyer thought we were trying to take advantage and was ignoring my calls pleading for help. After several months of calls, he finally called to talk to dad about legal matters on the phone and called me very apologetic that he had been ignoring my calls and that I was right that we had an emergency on our hands. At that point, he told me he had to legally consider dad incapacitated based on his phone call so it was too late for dad to change his POA. I was at least able to talk mom into changing her POA to me at that point, so that helped greatly. If you can get your parents to let you in to their affairs before you have to go the legal route that will save a lot of angst.

 

[RogueX]

It really is important to get a medical evaluation first. It could be dementia or ot could be something like normal pressure hydrocephalus. There are medical conditions unfortunately that can mimic dementia, which is why it's important to get medical evaluation.

 

[nw6675]

@disykat your parents sound a LOT like mine.

 

[tvguy]

Getting a doctor's evaluation is paramount. Maybe offer to take your mom to an appointment, and going in with her? Can you use the argument that it's for your peace of mind that everything's okay?

Declines can be slow or swift, depending on the specific type of dementia. With our mom, we noticed some cognitive decline, but there was a lot of masking on her part. Plus, a few years before, she had moved further away from my sister, so Sis wasn't stopping in as often. In our case, it actually took a psychotic break to trigger the hospitalization that led to a diagnosis. (I don't recommend this approach!). For us, Mom was diagnosed in September, and died the following May, so her decline was very fast.

A friend is dealing with this with her mother, and at this point her widowed mother won't give her permission to do so. And her attempts to talk to the Doctor directly without her mom have failed because the Doctor says that it would be unethical since mom has said she does not want to include her daughter in her medical care.
Her older brother lives over a thousand miles away, and she has talked to him and her mother about being more involved in her mom's health care and both feel it is unnecessary. That for now is the second road block to her becoming involved.
And in the OPs case with her father alive and apparently not concerned that would also be a road block to the daughter being involved. Spouses have more legal rights than children.
I sure wish I could help my friend, but I grew up in entirely different circumstances. Because my dad passed when I was 9, and my mom was an RN who wanted me to have all the legal tools I could need if she needed care, she had everything setup for me to step in for her care from the time I turned 18. It would be 37 years later before I needed to step in, but it sure made things easier when the time came that mom had everything set up so I could step in.

 

[disykat]

Speaking of medical, make sure you try to get your parents to sign a form at EACH medical provider location so that you and your sister can talk to them in an "emergency." We spent a lot of time talking about "In case of an emergency" as if we weren't already in one. Mentioning that we were giving our kids permission to talk to our doctors in case of an emergency (still on our to do list, but we intend to!) and have they considered doing the same for us also helped. The main thing was talking about it as something all families should consider NOT ANYTHING to do with dementia.

Oops, had the window open and didn't see tvguy's post until after I'd posted, but ditto. Siblings being at different levels of thinking whether we should be involved was a huge issue for us too.

 

[Lilsia]

No, they are healthy and independent. It is just her cognitive abilities that are noticeably deteriorating. We thought it was the pandemic at first - boredom and isolation. Maybe depression. But the confusion and memory loss has increased and becoming problematic.

I think we are right at the point in life where you realize your parents are not invincible and some tough things will be happening. At this point, I really just want my dad to say he has noticed it. They are both stubborn as all get out, so him acknowledging it is half the battle

This is very typical of people this age, them being very stubborn. My mom died and she was an only child, so it was up to my siblings and me to take care of our grandma. My brother was pretty much worthless and my sister didn't want to "offend", so I was the "bad guy". You have to have a serious conversation with them and usually many times. It is best to be looped into their financial and medical information. I had my grandma put me on her bank account so that I could help her with bills and such. It is older people, like this, that get scammed easily. People don't want to offend or disrespect their parents, but when a person starts to lose their mental capacity, it is up to loved ones to protect them.

 

[disykat]

YES! The first thing I did when I took over mom's finances is protected all her "numbers." Social security, credit cards, bank accounts, etc. She was getting phone calls from scammers all the time and I was so worried she'd fall for something. We had emptied dad's wallet a long time before. We kept things like his library card, AAA card, etc. in his wallet so he never noticed. As long as he had a few $1 bills in his wallet and some cards, he didn't worry about it since he knew mom was paying the bills. It got harder with mom, reassuring her I was taking care of all of it because that didn't feel "right" to her since it had been her job for so long.

 

[flyingdumbo127]

Much prayer and a hug, Eksmama01. Dementia is heartbreaking all-around. My beloved late grandma had it. Great advice already given. My only addition is to please take care of yourself! Take time for yourself. Being a caregiver in any way is a blessing but certainly not easy. Thank you for trusting in us to share. Thinking of you

 

[barkley]

just want to say that it might not be your dad trying to hide stuff from you. sometimes it is MUCH more apparent to someone who is not living with a person who is showing early memory loss issues. that said-i agree with others that a full medical checkup is in order b/c if this is a sudden change you're seeing it could be related to a UTI which can be treated and eliminate the symptoms (my mom went through a few bouts of these and once the UTI cleared up it was like a fog lifted from her).

best of luck to you.

 

[tvguy]

This is very typical of people this age, them being very stubborn. My mom died and she was an only child, so it was up to my siblings and me to take care of our grandma. My brother was pretty much worthless and my sister didn't want to "offend", so I was the "bad guy". You have to have a serious conversation with them and usually many times. It is best to be looped into their financial and medical information. I had my grandma put me on her bank account so that I could help her with bills and such. It is older people, like this, that get scammed easily. People don't want to offend or disrespect their parents, but when a person starts to lose their mental capacity, it is up to loved ones to protect them.

I guess the elephant in the room is that the relative in need has to trust the person they are giving permission to. And they have to be comfortable with facing they are mortal.
With my mom, the house I could not touch in her lifetime because it was in a trust, but her car and all her bank accounts I could access any time. She had to trust I would not rip her off.

 

[kymom99]

My mother in law did not have any cognitive issues right up until her last few months. But she did fall for the grandparent scam more than once. She resisted her kids being involved in her finances until she just couldn’t avoid it anymore. It was more pride than anything. She said for example, she didn’t want her kids to know if she sent money to those kids on tv that some people sponsor.

 

[QueenIsabella]

Speaking of medical, make sure you try to get your parents to sign a form at EACH medical provider location so that you and your sister can talk to them in an "emergency." We spent a lot of time talking about "In case of an emergency" as if we weren't already in one. Mentioning that we were giving our kids permission to talk to our doctors in case of an emergency (still on our to do list, but we intend to!) and have they considered doing the same for us also helped. The main thing was talking about it as something all families should consider NOT ANYTHING to do with dementia.

Oops, had the window open and didn't see tvguy's post until after I'd posted, but ditto. Siblings being at different levels of thinking whether we should be involved was a huge issue for us too.

I hear you on the sibling thing! That was a big issue for us, as well. For better or worse, our dad had passed, and then our mom became legally blind, so there were "legit" reasons for my sister to help her with medical care. After her psychotic break and subsequent diagnosis, our brothers both thought Mom could just move in with my sister. Never mind that Sis worked full-time and lived in a house with only a second-floor bathroom, 100 yards from a busy, 4-lane road. It would have been comical, if it wouldn't have been so tragic. And of course, neither brother was willing to lift a finger or pay a penny towards her care.

I do like the idea of the "divide and conquer" strategy--tell Mom that Dad could use a little help, tell Dad that Mom could use a little help. For things like POA, you can also point out that it doesn't have to be a permanent thing--anyone could fall, bump their head, and lose consciousness, needing a surrogate to make medical decisions.

 

[nw6675]

My parents are very open and organized about "where" all of the important paperwork, plans, etc. are at if they pass, but it is the interim piece that my sis and I need to get a better grip on.

I am 3 hours away and sis is local. We each see different aspects, but agree on what we are each seeing. Since I stay with them when I come, I get to see more than she does at times.

My dad has started saying things like, "It is hard to see your parents get old." They are also obsessed with all the things I need to tell the "next people" when we sell their house after they pass. Silly stuff you would not ever say to anyone buying a house. So I think my dad is quietly observing and has become super protective of making sure Mom is ok in other ways. I am hopeful when we can get them apart I will get a better feel.

I will go stay on Wednesday so pray when my mother goes to shower for the night I can get a few answers from him without causing too much alarm yet.