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Concerned For My Dad - Don't Know What To Do
Blazemom
Posted: Monday, June 10, 2019 5:54 AM
Joined: 6/9/2019
Posts: 7


Hello.  This is my first post.  I'm extremely concerned that my father is showing significant signs of cognitive decline but I'm not sure what I should be doing about it at this point.  It's probably been going on for six months to a year and I am heartbroken to see my father, who has always been the person I have gone to for advice, now not the person I've known him to be.  I will try to keep this from being too long-winded but feel I need to give a little bit of background.  

About 2 1/2 years ago, my 86 year old father (then 83) was diagnosed with lung cancer during a CT scan for an unrelated issue.  Fortunately, the cancer was discovered at an early stage and they've been able to keep it at stage 1 non-invasive.  He's only had radiation because he wasn't eligible for surgery due to his age and a pre-existing heart condition.  At the end of the first round of radiation, he started to experience extreme dizziness and loss of balance, which the doctors insisted was not a side effect of the radiation, although no one has been able to determine what is causing it.  He has since suffered several falls, although hasn't seriously hurt himself, at least not yet. He just finished his third round of radiation at the end of May and between round two and three, and especially within  the last few months, has really started to display even more cognitive decline.
He repeats questions, often appears to be disoriented and confused, frequently does not engage when he's out with us as a family (he doesn't really seem like he knows what's going on), and he sometimes doesn't seem to understand topics that I know he has (had?) a great deal of knowledge about.  My mother has mentioned to me that he sometimes seems out of it, but more to complain impatiently about it.  My mother has her own health issues to deal with and between her and my father, she is overwhelmed.  I don't think she really wants to contemplate the possibility that this could be a real and issue that could get worse.
I am their daughter, 56 years old.  I no longer work due to my own health issues.  I live 10 minutes away and am their main help whenever they need anything.  I have a brother 6 years younger who has good intentions but works A LOT and is recently remarried.  He is usually only involved peripherally or after the fact in most things that happen to my parents. He would probably be involved with major decisions but not to much with day to day things.

Now for my question - I am really concerned for my father and I don't know what, if anything, I should try to do at this point.  It breaks my heart to see my father declining in this fashion but at the same time, I'm not sure if there is anything to be gained by urging my parents to seek a formal diagnosis.  On the one hand, it seems like that would be the best thing to do, because I know other things can mimic dementia and also, if it's early enough, medication can treat symptoms.  On the other hand, my mother is very likely to resist any suggestion I make and I don't want my father to find out that I'm pushing for this and for him to be hurt or misinterpret my intentions.  As I am not the official caretaker, I don't really have any say in what they do, but I can see what's going on and I'm deeply concerned.  Yet I feel like I'm betraying my dad even thinking that he should see a doctor for this.  Does that make sense?

Can anyone suggest the best way for me to approach this, or should I just stay out of it and wait for my mother to approach me?

Livesbythebeach
Posted: Monday, June 10, 2019 6:49 AM
Joined: 4/3/2019
Posts: 146


It's clear you love your parents and want to be able to support them as much as possible.  I'm sorry to hear you've been noticing signs of cognitive decline in your dad. It sounds like you are trying to plan for the future, before things get worse.  I can relate! You aren't betraying your dad, you are trying to figure out how to take care of him. If anything, I think he'd be proud that he raised a daughter who would do that for him, and that too in such a respectful and thoughtful way. 

You should definitely call the alz helpline, they can give you more specific advice inluding how to talk to your parents about getting a diagnosis, and ways to go about making that happen. 

Do you currently have DPOA for your parents, or no? That will also determine how much you can do on their behalf.  

 

 


King Boo
Posted: Monday, June 10, 2019 7:01 AM
Joined: 1/9/2012
Posts: 3013


I echo the POA.  Find a Certified Elder law Attorney (CELA) www.nelf.org or if one is not available in your area, an elder law attorney who actually is an elder law attorney, not just advertise it as many do.

This is the critical tool that will enable you to accomplish a lot - even if it is in the future.

You'e got 2 people to work around - your Dad's dementia and your Mom's 'won't deal' with it stance.  Unfortunately, instead of having "The Conversation" even with Mom, stop and think about what would push her buttons to get her to bring Dad to the CELA, then to an MD appt. You have to be kindly manipulative.

Dementia is an important diagnosis to confirm, there are many types and there is medication that can plateau him at an earlier stage of the disease.

Make sure your Mom and Dad have you on the HIPAA privacy documents from the MD, only then can you communicate directly with the MD.

Your way of thinking about 'betrayal' is rooted in your past =- a world that is gone.  Dad is altered in his thinking, Mom is likely denying things in the face of her own fear and reality of aging.  You have to get over that, or you have a mess.  Like it or not, you are the 'unofficial' decision maker now, you have to stay clear headed and methodical, clinical in your thinking.

There isn't anyone else.

Get the medical eval, get the DPOA.   If you hit a wall with an MD, a PhD Neuropsychologist can be very helpful in documenting areas of deficits.


Blazemom
Posted: Monday, June 10, 2019 7:27 AM
Joined: 6/9/2019
Posts: 7


Thank you very much for your replies Livesbythebeach and King Boo.  You've both given me a lot to think about.  I had already taken note of the Alz helpline and will definitely contact them.  They look like a really good resource.  As for as the POA, no, I do not have one.  Wouldn't I need to have my parents' consent to get a POA for them?  I'm not sure my parents would give it at this time.  They are independent and I'm not sure they would see any reason for it.   They have wills, in which I am the executor, and my mother has always said when one of them dies, then they will put me on the deed to the house and bank accounts.  I've tried discussing advance directives and that sort of thing with them but my father just defers to my mother and my mother doesn't want to discuss it.  POA is going to be a tough sell.  Maybe a contingent POA.

As for the idea that a less confrontational conversation and more of a "manipulative" approach -- that is really a great suggestion.  Like getting my mother to think it was her idea.  I'll have to think about what my work.

Thank you so much for taking the time to give me your thoughts.  I know in reality I'm not betraying my father, but trying to help him.  While he still isn't "that bad" though, there is a certain temptation to want to join my mother in denial and just say maybe I'm overreacting and just let things be.  I don't think I am though and it really hurts to let myself admit that.


RIM
Posted: Monday, June 10, 2019 8:06 AM
Joined: 5/22/2019
Posts: 5


My father (93) started a very rapid decline last year-  with short term memory loss, cognition decline, confusion,  hallucinations.   He was diagnosed with dementia then Alzheimers.  His decline was very rapid and I suspected some peripheral cause.  The root cause as it turned out was a severe sleep disturbance, obstructive sleep apnea.   All his doctors made a very wrong assumption. 

I suggest taking him to the doctor for a blood test.  If he's deficient with vitamin B, or D, or has other deficiencies, this will cause reversible symptoms of dementia. 

His symptoms may in fact be dementia,  but it may be something else.  You won't know if you don't have his condition investigated.

 


Jo C.
Posted: Monday, June 10, 2019 8:07 AM
Joined: 12/9/2011
Posts: 9848


Hello Blazemom and a very warm welcome to you.   I am sorry for what is happening and can certainly understand your concern.  Your parents are blessed to have such a caring daughter.

Hopefully your father has had a thorough medical exam with a full menu of labs drawn to check body systems that may be all of or part of the causation for his changes.   Chem panel, B12, thyroid check, CBC, UA and more; all would be part of a good screen.

Since the changes in your father began with the radiation therapy for lung cancer, one can wonder what the possible relationship of that may be.  While our primary care MDs are awesome at so much, they are not on the cutting edge of dementia nor are the specialists who practice areas other than dementia.

It would be a positive to have your father seen by a good Neurologist who sees dementia patiens as a routine part of his/her practice.  Neuro will be able to assess the possible effects of cumulative radiation and medications on the brain and will also be able to determine if and what type of dementia is present.   This is important as there are multiple different types of dementia and even different causations.  Meds for one type of dementia may be contraindicated in another and even make things worse.  Neuro is best at making an accurate diagnosis for type of dementia.

Once you know what is present, then a plan of care can be developed. In some instances there are medications that can slow down memory loss and can also meet other challenges.

NOTE:  Though it may sound unnecessary; you absolutely, positively DO need to have your parents do their "estate planning," and have Durable Powers of Attorney done; one for Healthcare, the other for Finance for each parent.  These are a safeguard should a Loved One, (LO) have a sudden change in condition and are no longer able to make decisions for themselves and need someone to assist them.

This would not be a threat to your mother; it is a protection.  It is best to do this through an Elder Law Attorney as that is the specialty that is needed. The Certified Elder Law Attorney can also help plan and position your parents best for future needs to protect them and their assets.  This is very important.

For my LOs who were elderly and who may have questioned my being a "Power" of Attorney; I simply decided to say that we needed to do, "Estate Planning," and that was acceptable.

If you do not do this, if something unforeseen happens to your mother, there will be no legal documents outlining if someone can make decisions, who is in charge of making decisions and how that is to be done, who is the one chosen to represent the parent(s), etc. ALSO:  The parent has to be able to sign the document. One can have dementia and still be able to sign as long as the person knows that it is a document to protect them and to whom they are making their power of attorney.

I would not delay the legal aspect as well as the medical aspect; you will be glad you did. It is even very helpful if the parent trusts the adult child to have ones name put on checking and savings.  This helped me to avoid SO much complexity, delays and other problems with the banks.

The Alzheimer's Assn. Helpline can be reached at:  (800) 272-3900.  If you call, ask to be transferred to a, Care Consultant.  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive, have much information and can often assist us with our problem solving.

Let us know how you are doing and how your parents are, we will be thinking of you.

J.


harshedbuzz
Posted: Monday, June 10, 2019 9:13 AM
Joined: 3/6/2017
Posts: 1590


Hi and welcome. I'm glad you found us, though sorry you have a need to be here.

I was in a very similar situation a few years back- dad was clearly showing signs of poor memory, lost executive function skills and a complete lack of social filter and my mother's response to my concerns were blown off as a normal part of the aging process

It was harder for me because they weren't local to me at the time and I didn't get to see them very often. My dad's behavior had alienated his brother and grandchildren, so there wasn't anyone else sharing their concern with my mom. It took a crisis to get mom on board and dad evaluated, but while I was waiting for that crisis, I did the research to find a good CELA and memory center so that I would know where to turn. 



dayn2nite2
Posted: Monday, June 10, 2019 9:27 AM
Joined: 6/20/2016
Posts: 1921


Who’s pushing for treating the cancer?  It’s pretty obvious the radiation is causing deterioration.

It doesn’t sound like you have much say in this situation.  If there’s any way to get them to consider stopping treatment I’d go that route.

Which is the worst death, cancer or dementia.  Many on this board would say dementia.


terei
Posted: Monday, June 10, 2019 1:31 PM
Joined: 5/16/2017
Posts: 392


Doing DPOAs + advance + health care  directives are vital for aANYONE’s estate planning.    I would explain to them you ‘have a friend’ whose parents were incapacitated by a serious accident + no one in the family was able to legally do anything for them + a court took control of their financial + medical care.    If they dont want to take your advice, strongly suggest they consult an attorney about the necessity of these documents

I asked my parents ‘what if you have a stroke + cant take care of things??’ You dont have to say anything about dementia or AD, but stress the real possibility of them becoming incapacitated for other reasons.

Your mother sees him constantly + his decline has been gradual so she is not seeing the cognitive decline as clearly as you are...also there is frequently the aspect of denial that comes into play by those closest to him


Blazemom
Posted: Monday, June 10, 2019 2:59 PM
Joined: 6/9/2019
Posts: 7


Thank you all so much for all the kind and insightful comments.  I did actually end up discussing this with my mother today and was surprised to find out she was more receptive to talking about it than I thought she would be, and not in denial at all.  However, she said my father does not want to see a doctor about it.  Not sure where we go from that, but we will continue to talk about it for sure.  Between my two parents, this is the first month they haven't had a doctor's appointment just about every day or every other day for the past several months so I think they're feeling a bit burned out on going to the doctors.  I'm going to keep talking about scheduling a full checkup with his GP, but understand that they need a little break from it too.

I had seen that other things such as B deficiencies can cause dementia, and mentioned this to my mom as a reason to go and find out what's going on.  My father sees a lot of doctors and has regular blood work so unless these are not routine blood tests, I think they would have seen the irregularity, but it is still something to look at.  

I will bring up the POA issue with my mom.  I think that is a good suggestion not linking it to dementia but simply couching it in terms of an "anything can happen at any time" scenario.  My mother assumes that while there are still two of them, it isn't necessary even though she knows my father would be stymied if he had to pick up the day to day financial tasks (not even necessarily from dementia, just simply because he doesn't know how). 

Thank you again for the overwhelming support.  Your suggestions are so specific and focused.  I feel like I know more what needs to be done now.

 


King Boo
Posted: Monday, June 10, 2019 3:07 PM
Joined: 1/9/2012
Posts: 3013


Blazemom,

Yikes, there is SOOOO much wrong with your parents' plan to put you on the house AFTER one of them died.  I mean, if Mom goes first and Dad is in the throws of dementia, HE's sure NOT going to be able to.  He could throw away every asset he has, leaving him penniless for care - you NEED the DPOA.   Even a 'transitional' one is better than nothing - although a PIA, trust me, it is still a tool.

Examples of productive button pushing. 

 "Gee, Mom, that plan, and it will work fine as long as you are healthy and Dad is the one to die first.  But if you die first and Dad is too sick or has dementia, it would be a shame to loose the house and all his money for care because you didn't have a back up plan with a POA.  Let's just go to talk to someone who knows about this, the CELA"

"Wow, Mom can you believe Dad gave out his ss number and credit card number over the phone to a scammer!  I can't believe it - you could loose everything this way.  Let's get the POA's done just in case - I can't help him without it if you were gone."

"I would NEVER FORGIVE MYSELf, if I didn't get Dad help and protect him if I had to.  I can't do that without a POA!  There are all sorts of POA's, YOU ARE THE BOSS, you can pick the type.  Let's go together to the lawyer and she'll help you!"

"If you want to have a house to live in, we need to protect it in case Dad has to go to a nursing home!   Let's see how the lawyer can help us do this!!!"

Get the idea...??? Use what works for your parents.


jfkoc
Posted: Monday, June 10, 2019 3:41 PM
Joined: 12/4/2011
Posts: 17061


You have gotten some clear and concise information.

The first step in diagnosis is ruling out so.....perhaps one of his Drs could suggest a full panel of blood work be done almost as a routine part of radiation therapy.

HIPAAs and DPOAs... you might say that you were told by a friend that you yourself needed to get one and ask if they can explain them to you. This could be an informal conversation about the subject and you could even ask them if they would serve as your agent....if they would mind if you listed them on your HIPAA form.

It is a reasonable conversation that responsible people would  have and if you keep them in the "parental" role you may more easily get them on board. 

We all need certain documents to handle the "what if" question.

Please let us know how it going and know we are here to support you as well as to share info.

added....please always make yourself available to your parents to listen....they will want to remain independent but may need a  younger shoulder at times. 

Always keep your eye on the goal and keep in mind that the straight forward approach may very likely not get you there.


leahm
Posted: Monday, June 10, 2019 4:02 PM
Joined: 2/15/2017
Posts: 32


My advice is to get him to a neurologist.

Make sure their legal affairs (POA DNr , etc) are in order.

You sound like you have your hands full.  Finding answers from neuro will help.  But get on that paperwork and keep extra copies around.


pidgeon92
Posted: Monday, June 10, 2019 6:26 PM
Joined: 10/25/2018
Posts: 238


When he goes to the doctor, you need to go with him. You've gotten a lot of good advice on the kind of questions to ask regarding other possible causes for his cognitive decline, you need to make sure the proper testing will be done. Neither of your parents will want to/be able to talk about these things to the doctor.

If you can get him to a neurologist, try to get him to one that specializes in memory care. Too many general neurologists seem to not take cognitive decline seriously.


harshedbuzz
Posted: Monday, June 10, 2019 6:56 PM
Joined: 3/6/2017
Posts: 1590


Blazemom wrote:

Thank you all so much for all the kind and insightful comments.  I did actually end up discussing this with my mother today and was surprised to find out she was more receptive to talking about it than I thought she would be, and not in denial at all. 

I'm glad you were able to have the discussion. 


 However, she said my father does not want to see a doctor about it.  Not sure where we go from that, but we will continue to talk about it for sure.  

If he does have dementia, he doesn't have the capacity to make this decision. You do whatever it takes. I'd advise you to share concerns with the doctor ahead of time so you don't have to throw him under the bus during the appointment. Even if you don't have HIPAA paperwork for the doctor to share with you/mom- you can communicate with the doctor. You can get him there under a ruse that the appointment if for your mom, to have a prescription refilled, or because Medicare requires it. 

Between my two parents, this is the first month they haven't had a doctor's appointment just about every day or every other day for the past several months so I think they're feeling a bit burned out on going to the doctors.  I'm going to keep talking about scheduling a full checkup with his GP, but understand that they need a little break from it too.

Maybe it's best to stop talking, especially with dad. Just schedule it. It can take 3-6 months to get in to see a good neurologist versed in dementia. 

I had seen that other things such as B deficiencies can cause dementia, and mentioned this to my mom as a reason to go and find out what's going on.  My father sees a lot of doctors and has regular blood work so unless these are not routine blood tests, I think they would have seen the irregularity, but it is still something to look at.  

These tests, along with the ones for hormone deficiencies, are not typically ordered. A week before I took my dad to the big city university affiliated hospital in a confused psychotic state, my mom took him to the local small town ER which did not draw blood for these deficiencies even though his Wernicke psychosis was classic in presentation. I often wonder if we could have preserved more cognition had he been treated proactively as he was in the big city. FWIW, Wernicke-Korsakoff's is a Thiamine deficiency that is associated with some cancers and also alcohol abuse, HIV/AIDS, bariatric surgery and even morning sickness. 

I will bring up the POA issue with my mom.  I think that is a good suggestion not linking it to dementia but simply couching it in terms of an "anything can happen at any time" scenario.  My mother assumes that while there are still two of them, it isn't necessary even though she knows my father would be stymied if he had to pick up the day to day financial tasks (not even necessarily from dementia, just simply because he doesn't know how). 

Having a POA and Healthcare Proxy is just responsible adulting. Maybe you could convince her by going with her to have the same documents drawn up for yourself. The financial piece is scary; my dad daytraded away over $350K in the two years before his diagnosis. Thank the Lord he forgot his passwords and eventually his laptop. 

Thank you again for the overwhelming support.  Your suggestions are so specific and focused.  I feel like I know more what needs to be done now.

Good luck. This is challenging stuff. 

 



Blazemom
Posted: Tuesday, June 11, 2019 3:47 AM
Joined: 6/9/2019
Posts: 7


Once again, thank you all for the many replies and comments.  There is a lot of sound advice here.  I understand that there are two things we will need to do going forward -- see a doctor to address this medically and deal with the estate planning issues.  It completely makes sense to have a POA now to avoid a lot of problems later.  It's honestly hard for me to imagine my father doing some of the things discussed here as it would be so out of character for him to give away all of their money, whether to scammers or stock trades or whatever, but I guess his personality could change if he continues to decline.  Right now, he is still only showing mild cognitive deficits and is still 100% himself so I'm not worried about him doing that but will work on the estate planning now in the event things change later.

Thank you again for all the very good advice, support and strategies.  I'm not sure I've ever posted on a forum where people were so responsive.  I really appreciate it.


Livesbythebeach
Posted: Tuesday, June 11, 2019 6:07 AM
Joined: 4/3/2019
Posts: 146


Blazemom- Good job on starting the conversation with your mom.  One of the things I'm learning is that it's ok to try things . . . they may or may not work, but the important thing is for you to figure out some strategy.  Frame all of this for your parents as, "I want to be able to take care of you IF something happens . . " or "One of my friends just mentioned setting up a POA, I was thinking it would be good for us to do that".  

Also be aware it might take time to get these plans in motion, and that's ok, it's not because YOU aren't trying and caring.  You're dealing with your elderly parents, who are going through their own concerns around aging, and it's emotionally tough on everyone.  My mom refuses to get diagnosed, but her cognitive decline is obvious - last time she visited, every single time she went to the bathroom she would ask me if there was soap in there for her, and I would have to go with her and point it out.  It is hard to see our parents age, and it's hard for them to ask us for help (even if we've been helping them a lot!). 

Definitely call the helpline and ask to speak to a care consultant, they can discuss specific ideas which would help you and your parents.  

And make sure to take care of yourself- this can all be so overwhelming.  I have days where I know I simply cannot deal with trying to put plans in motion, and other days where I have the time and energy.  Talk to your friends, post here, call the 800 number to vent or ask specific questions.  You are not alone! 


King Boo
Posted: Tuesday, June 11, 2019 6:28 AM
Joined: 1/9/2012
Posts: 3013


Lots is hard to imagine, but remember we base these feelings and impressions upon the OLD world, which is slipping away.  Your dad is always your dad, but his abilities, emotions, personality and judgement will all be affected by dementia.  Think swiss cheese. 

 My LO could still follow the stockmarket at the point he gave over $130,000 away at the bank and couldn't tell me where it went.  Just to some man - not sure if he worked there, but he could get me another .4% interest.  THAT, was a really, really bad 24 hours while we had to track that down and determine what happened.

Sorry to be such a downer, but it's true.  


dayn2nite2
Posted: Tuesday, June 11, 2019 11:40 AM
Joined: 6/20/2016
Posts: 1921


The hallmark of the disease is doing things that are out of character.  This will happen as one of the earliest symptoms and you’ll get no warning.

One day he may go outside, take off all his clothes and walk around.

One day, he may drive to the store to get some coffee, be unable to figure out how to get back home and keep driving forward until he runs out of gas.  You may find him alive after a few days, maybe not.

One day, he may meet a stranger who befriends him and takes everything they have.

You’ll never know until after.


Blazemom
Posted: Tuesday, June 11, 2019 2:15 PM
Joined: 6/9/2019
Posts: 7


Yes, I suspected from reading on here (and elsewhere too) that acting out of character is a symptom or trait of dementia.  I understand that most if not all of us cannot imagine our parents doing these things.  It's a lot to wrap one's head around.  

I am long overdue to execute my own advance directive and financial power of attorney.  My mother is the person I would ask anyway to be the agent on my behalf as long as she remains mentally active so I will suggest to her that it makes sense for us both to execute the documents and then we will all be protected.  

Thank you so much for sharing your own stories.  It's really hard to see our parents decline in this way.  Some days I can't even believe my parents are "elderly."  I was looking at a picture of me and my father last night from an early 90's graduation when he was only a few years older than I am now.  He was so young!  I'm really close to my parents so I feel very lucky to be able to have these years with my parents but it's hard too, knowing what I'm losing.


Dukij
Posted: Thursday, July 4, 2019 12:24 PM
Joined: 7/4/2019
Posts: 2


I understand you very well. I was in that situation too This was said very precisely. Our problem started when our great-grandmother began to forget where she is and who we are. This was a very difficult period. Mom didn’t have the strength and time to constantly take care of her. Everything was decided by itself. Somehow great-grandmother went outside and forgot where she went and where she lives. We were very worried about her. When the doorbell rang at the door, and there stood a woman with our dear Granny. A woman from https://myallamericancare.com/  , as it turned out later. She immediately understood what was happening according to our dear grandmother’s bewildered look. She subsequently worked with us for another two years. Therefore, I believe that constant qualified care is always needed.
 

Army_Vet60
Posted: Thursday, July 4, 2019 12:39 PM
Joined: 6/21/2019
Posts: 345


I recommend you get his PCP to refer him to a neurologist so you can get confirmation of what is going on with him cognitively.

Once a neurologist can diagnose him, then s/he can begin to give you guidance on what to do for him.


 
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