Early onset dementia and BTDT advice please

[MrsBasil]

My father has been diagnosed with some form of dementia, among other issues. He's in his mid 50s and I was seeking any and all advice. I had a longer post up, but felt there was too much detail to leave up.

 

I appreciate the hugs, well wishes, advice, and prayers.

[Kim in Appalachia]

I have no thoughts, no advice, just  :grouphug: .  

 

You sound like you doing everything right.  He's so young still, I can't imagine how hard it is for him or your mom.   :grouphug:

[bzymom]

I also have no advice, just ((hugs)).

 

I admire the way in which you have restructured pieces of your own life for your dad. He is very fortunate to be so loved.

[EKS]

:grouphug:

[MrsBasil]

I also have no advice, just ((hugs)).

 

I admire the way in which you have restructured pieces of your own life for your dad. He is very fortunate to be so loved.

 

 

Thank you, both of you.  <3

I am as loved by my parents as they are by me(and my brother, SIL, and husband).  They have always been willing to love me through the hardest of times and help me when I was in over my head.  I am happily doing what little I can to make this..somewhat less hard on them.

[East Coast Sue]

My FIL was diagnosed with Parkinsons and Alzheimers in his late 50s.  He started medication (not sure of the name) but it has been a huge help to him. Now, he studies a variety of subjects in depth to keep his brain active- and he was previously NOT an academic/intellectual guy. There is hope if the medication works for him. My FIL is really all together a different person since he entered treatment. I know it is going to progress but for now he is doing well- and it has been nearly 10 years since his diagnosis. I hope that you find the same hope and help in treatment for your dad.

 

(((hugs)))

[momto5blessings]

I am so sorry.

 

Your symptoms sound similar to those with my father.  In particular, the balance issues, clumsiness and loss of speech along with the memory issues.  My father was found to have Lewy-Bodies Dementia which is dementia that has Parkinson's like symptoms.  Please look into this as well, as it is a bit different in presentation than just dementia.

 

I am praying for your family.

Pamela

[Luckymama]

:grouphug:

[Jenrae]

I have no advice to offer when it comes to the symptoms your father is dealing with,but I did want to encourage you in your effort to have your son spend more time with your father. We went through a similar experience with my dad after an injury and have never regretted slowing down our schooling to spend time with him and making memories while we could. You are making a wise choice in this. {{{hugs}}}

 

I will keep your family in my prayers.

[Joanne]

Your post reveals an awesome mother and adult daughter. I can not help you medically, but I would like to encourage you to practice excellent self care and hug all your people.

[MyThreeSons]

Has your father been on meds for cholesterol? I've read several times that there seems to be a connection for some people between cholesterol meds and memory issues.

 

My dh was diagnosed with probable Alzheimer's several years ago. The only way to get a definitive dx is at autopsy. 

 

 

[readwithem]

Hugs to you!  Good for you for making memories while you can.  

 

The main thing I would encourage you to do sooner rather than later is get the POA in place, as that will open doors that legally would otherwise be closed to you (or your mom).

[Ottakee]

Sorry you are going through this.  You might ask your neurologist if a mitochondrial cocktail might be helpful.  It is a combination of B vitamins, CoQ 10 and Carnitor.  Our neurologist has mentioned it in relation to Parkinson like symptoms.

 

I would find a good estate lawyer and do some planning now.  You might be able to put some things into a trust to manage for his care without affecting his disability and/or Medicaid eligibility.

[NorthwestMom]

You are doing great.  :grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:

[Laurie4b]

So sorry that you are dealing with this, but it certainly sounds like you are facing it with love and grace. :grouphug:

[MrsBasil]

Has your father been on meds for cholesterol? I've read several times that there seems to be a connection for some people between cholesterol meds and memory issues.

 

My dh was diagnosed with probable Alzheimer's several years ago. The only way to get a definitive dx is at autopsy.

I am sorry to hear about your DH. Yes, my dad has been on cholesterol meds. Interesting.

[Storygirl]

:grouphug:  :grouphug:  :grouphug:

 

My mother has Alzheimer's, and my grandmother did, too, so I've had first-hand experience, although my mom didn't become symptomatic until her mid-60's. I'm not sure that Alzheimer's explains the clumsiness, so I'd suggest seeking further answers.

 

On a encouraging note, DH's grandmother got her driver's license for the first time sometime in her 50's or 60's and then drove independently until her 80's.

[MrsBasil]

Thank you all. The hugs, kindness, and prayer means a lot.

 

I'll be following up with his neurologist once we get through this round of tests he's ordered. Thanks for the information and avenues to explore and research.

[gracesteacher]

we are walking this journey with my mom. she gas suspected lewy body and Parkinson's and RA

she is now on the down hill slide

here if you ever wanna talk

[StephanieZ]

Whoa. That is really rough. So young! My mom has ALZ, but she is in her mid-70s, so it is a much different issue, as at least she was retired and had her affairs in good order before it struck.

 

My suggestions would be to

 

1) get ahead of the disease. Don't let denial slow planning and progress.

 

2) Get his legal affairs in order NOW with an excellent estate/elder care attorney. Do NOT scrimp on this. Find the $$ to pay someone great and spend enough time with them to be certain you have all the right paperwork in order. NOW. Be sure to plan for contingencies (if this person can't do it anymore, who will? if these two children disagree, then what?) and do your best to plan things to avoid conflict among family members. If you are lucky, he has already done much of this, but he is so young, he might not have done it thoroughly.

 

3) Get his financial affairs in order. Talk to the elder law attorney about medicaid/disability/etc planning. Depending on his finances, there may be things to do now to improve things later, especially if he is married and his wife (your mom?) is still living, as I assume she is. You need to help make sure his wife's interests are looked after, because especially in this young an age, she could be really devastated financially but has decades of life left. So, this is another thing to "get ahead of". 

 

4) In general, I encourage you to act sooner rather than later. You can be gentle and respectful, but, eventually, someone will have to take over and make decisions on your dad's behalf. The patient is NEVER going to be "ready" for whatever step he needs to take next. Ultimately, someone has to take responsibility for making the hard calls. 

 

5) Don't fall into the negative stereotypes. This is a terrible disease, but it is NOT over yet. I watched and read this story earlier today and found it to be very insightful as well as positive. This is the closest description I have seen of what our experience with my own mom has been so far. http://www.cnn.com/interactive/2014/09/health/sandys-story/index.html

 

6) Don't waste your energy trying to make the world different. It is a sad truth that 98% of your dad's friends and 50-90% of his family will head for the hills as soon as they understand his diagnosis. They will generally talk a good game when directly approached or confronted, but will simply NOT be there. They will treat him as if he is already dead except when you bump into them, at which time they will speak meaningless platitudes for however many minutes they are stuck there talking to you. They will hug and smile and say "I think about you all the time" but that will be it. They are shit heads. This sucks. This is reality. You don't have to accept or condone it, but you don't want to waste your precious energy fighting it uselessly either. Appreciate the good souls, and let go of the rest. 

 

((((hugs)))) Be strong. 

[MrsBasil]

Thank you.

 

We're already working on getting to an attorney to get asset management, estate planning(including SSDI, his existing pension and long term insurance issues etc.), a revision to their existing wills, POA, and such.  My mother is his wife-they've been married 33 years.  I have one sibling and so far we've been in agreement on how to handle this.  My mom is looking to us to make decisions, but she's included in every talk.   So far, dad mostly agrees.

 

I live 30 minutes away.  My brother lives a few states away.  We have no other family locally. My mother doesn't drive and I am working on helping her to get a learner's permit, so she can re learn how to drive.  Right now, I am driving back and forth every few days to handle errands and doctor's appointments.  We actually have a long day of testing on Monday coming up.

 

No personality changes yet.  I take him hiking with my kids, he's very close to my son.  My husband(who hates to fish) has suddenly developed an interest and he takes my dad and son.  My dad can't handle tying lures or casting anymore. 

 

I have to say that I really, really, really hate dementia right now.

[MrsBasil]

we are walking this journey with my mom. she gas suspected lewy body and Parkinson's and RA

she is now on the down hill slide

here if you ever wanna talk

 

 

I'm so sorry about your mother.  Thank you very much for offering to chat.

[BlsdMama]

I'm so very sorry. ((( Hugs.))))

[SweetMissMagnolia]

it's hard.....find support groups in your area....learn as much as you can....and if you have family get a support line there-dh and I are overseeing his dad and it is sooo hard-we have NO support from the other family.......

[StephanieZ]

FWIW, be sure that the estate documents go ahead and, if Mom is willing, give you (or whatever sibling is going to help Mom and Dad with their financial affairs) full "durable POA" as well as a "health care proxy" AKA "medical POA" either in addition to or in place of Mom. They are pretty young for this, so Mom (and Dad) might not want to do this (instead leaving all the POAs in Mom's hands for now). The downside of that is that if you (or another sibling) is going to be doing much if any paperwork/etc for them, it really is a PITA without the POA in place. My mom had set hers up as my brother having the dPOA and me having the medical, but as soon as she was diagnosed (but before she was of questionable legal competence to update her documents), we worked with her attorney to revise the dPOA to be that either my brother OR I could act unilaterally as her dPOA without either of us having to no longer do so (usually they are set up to be just to one person, and the only way the 2nd person can act as the POA is if the first one totally steps away, losing all rights to act as the POA). So, now, since I have Mom with me and do 95% of her financial/legal paperwork, I can do that, without my brother having to permanently recuse himself from doing the same. This could be even more important with the first person (presumably Mom) is the wife. You don't want her to have to totally recuse herself from acting as Dad's POA just in order for you to also act as his POA. So, IMHO, in your or your parent's shoes, I'd go ahead and give the DPOA to both a child (you) AND spouse. However, it is imperative that if there are "dueling POAs", they be working well together . . . Lawyers rarely suggest doing this as if there is conflict among the POAs, it could be a total fiasco. If you have any doubts about your mom's ability to handle finances or medical decisions for your dad or herself, then this is the time to advocate for simply making a child your dad's POA. 

 

Personally, if dh and I were in our 50s and had children in their 30s or older who were clearly financially competent, stable, honest, and of course completely ethical (and not married to anyone who was unscrupulous), I would probably just give the POAs to an adult child . . . You don't even have to physically hand the POAs to the adult child until a later date, and without them, the child cannot use them . . . so you can execute them ahead of time and then just hand them over when needed. That was what my mom did, and she was a family law attorney herself, so she was very savvy about those things. 

 

This only works if the child is 100% trustworthy, but I am assuming that is the case. The medical POA can remain with your Mom probably, since you much more rarely actually NEED the medical POA to make decisions, whereas the financial POA is needed day in and day out to deal with phone bills, insurance companies, etc, etc. 

 

Be sure not to make the DPOA a "springing" one that only functions if the person is deemed incompetent, etc. In this situation of dementia, that is just one more big PITA and completely inappropriate with dementia. Indeed, knowing what I know so far, I'd never make ANY POA a "springing" one unless I was in the tragic situation of not completely trusting whoever I was designating as my POAs. We are updating our own estate documents this winter as soon as our eldest is a legal adult, and we will execute POAs at that time for each other (dh and I) that will not be springing at all. 

 

So long as you are yourself of sound mind, you can ALWAYS revoke any POAs at a later date, so if you divorce, or a kid goes off the deep end, or whatever, you can revoke or change the POAs later. 

 

And, hopefully it goes without saying, but be sure your mom gets HER documents updated and in order right now, too, as she will need to designate a child as HER health care agent, etc, since her spouse can no longer take those roles. 

 

All those things should be carefully discussed with an excellent elder law / estate attorney. 

 

(((hugs)))