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Need help figuring out how to help.....

We recently moved closer to help my mom and her husband.  They did not ask - it was a choice and also so my husband would retire.  She is 82.  Various health issues, but perks along.  She has also been using a patch for memory issues for at least 5 yrs (she won't divulge).  11 yrs ago she married a man turning 89 in December.  His memory has definitely been declining for several years.  A neurologist prescribed Namenda at some point, then moved away, so their primary has just been renewing script.

 

In the summer we noticed he was having difficulty w food - pushing food around in mouth w finger.  Also right eye drooping.  They saw HCP at our urging, but things had improved so nothing came of it and she didn't order any tests.  Then in Oct it came back - much stronger this time - as well as difficulty holding head up- literally using hand to hold head up.  It was crazy.  And my mom wouldn't take it seriously - even told my husband after 1.5 wk of this that I was making too big a deal.  HCP finally ordered X-ray and referred to a neurologist.  Impossible to get into one here - very few.  I called the neuro's office and secretary told me it would be months - asked if he had any studies done.  Said he could go to ER and they would order studies, or wait for appt and have neuro order them.  We finally convinced them to go to ER.  Food literally falling out of his mouth at this point....

 

Saw a PA (what the hell is it w PAs in ERs???) who thought TIAs.  Then an MD came in and said myasthenia gravis.  But we never saw the MD again, only saw PA who insisted was TIAs and sent home.  This was a Friday.  The following Tuesday the neuro had a cancellation and called them in.  He was shocked ER had not kept him and wanted to call an ambulance - which they refused.  His office also called me to tell me that he told them they both have memory issues and should always have someone w them at appts.  (Which my mom also refuses.) He was in hospital Wed - Sat - hospitalist and hospital neuro agreed myasthenia. Prescribed Mestinon and prednisone.  W order to followup w a neuro in 10-14 days.  (that has not happened)

 

A big problem here is that most doctors have thick Spanish accents and people w hearing problems have a very difficult time understanding.  That's the case w both these neuros.  So mom is on a mission to get him into one at the medical school - but they get 300 apps a month for a neuro appt.  Our daughter is a hospitalist and was here for thanksgiving.   She told my mom they should see someone now, even if they change, but mom is refusing, and it also feels as if she doesn’t get the importance of earlier followup.  The Mestinon has been helpful, but he is on a low dose and it wears off quickly.

 

Background:  My mom and I were estranged for many years, so my husband and I work very hard to just try to be helpful/social - meals, concerts etc.  I have one sister in far away - she has all the POAs as far as I know.  (again, I have tried to stay out of this convo).  He has 4 children.  Only one lives here - never see her - she thinks my mom has tried to keep her from her dad.  No clue re the validity of that... mom feels like daughter doesn't want anything to do w them.... who knows...  When they got married his kids were against the marriage and demanded attorneys etc to keep everything separate.  Mom says he doesn't really have money.. who knows.  She's ok on her own. I have met his children only once - at wedding 11 yrs ago.  5 yrs ago she had knee replacement - I came down for a wk.  Being in the house I realized things weren't going all that well... emailed my sister and his kids w my observations - pills not taken regularly etc.  Just my observations!  The POA son wrote back and asked if we should put them in same nursing home or separate.  WTF.  My mom found out I had sent that email and was furious - demanded I never contact them again.  So i've stayed out of everything.  Even now.  We didn't call his daughter about this health issue - mom finally called her when we went to ER.  And he just doesn't have the memory/capacity to realize if it happens or not.

 

SO!!!  this is obviously not sustainable.  But I really don't know how to proceed.  I joined a caregiver group on FB - they all just said go get guardianship.  I think that would infuriate  my mom to no end and really mess w our relationship.  I totally don't trust my sis or his children so have been avoiding contact w them.  My husband is a prince - we make a good team - but we need help.  Am thinking of going to talk to an elder law atty for guidance - but no idea how to proceed re medical.  The home health nurse was nice and talked to me - but "tattling" to her also does not feel sustainable.  If we had been here for years and established a relationship w them it would be different.  But mom gets angry if I ask if he's had his pills or a meal.  Sigh…Appreciate any/all suggestions.

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Hi Peggy,

Well this is a hot mess, isn't it? Oy!

Do you live in a rural area? I do, and i know what you mean about waiting forever to see specialists. I live in a county that's the size of Connecticut with fewer than 7500 humans. Not one traffic light in the entire place. But enough about me.

         I used to be a geriatric care manager, and i've been a medical and clinical social worker for 30 years. My own parents were hard to help and now they're gone. I have a few ideas, and please take what you like and leave the rest.

        What you've started to do is awesome, and that's befriend your mom and her husband of 11 years. Getting her and them used to you (and your husband) is a great thing. You obviously have to be super helpful and respectful so as not to encroach on her freedom, because she'll just dig in, and that's how she's perceiving your observations about missing meds, etc, as encroachment. I don't know what your facebook buddies are thinking: it's not that easy to get guardianship, and your sister with the POA for mom and the son of step dad would be the likely guardians anyway, not you. 

      With a diagnosis like he has now, the drugs help but the trajectory is a slow decline, and maybe not so slow. The POA Son should be going to doctor appointments and at least getting a sense of possible futures. If you don't have access to all of their financial information, there's no point in going to an eldercare attorney. 

      I'm thinking, keep ingratiating yourself. Earn their trust. Don't question and spy (so they notice), and be truly  helpful. This may mean scrubbing the bathroom. Or hanging out with step dad so your mom can get her hair done. Or something. Just being in their lives. Eventually (maybe after the holidays? when the other members of your generation are a little less stressed?) you can get into some candid discussions with your mom, and then your sister, and his son. I think family meetings are awesome: there are such cool ways to do those with computers now. with visuals. Ask a teenager to show you how. 😄  

     Meanwhile your mother needs to trust you.  She has the right to be stubborn and make bad decisions. If she is impaired cognitively, she still has the right to be a pain in the tuckus. She is worried that she is losing her freedom, and she is, and not just because she can't remember to take meds, or make her husband take them. It's because she IS slowly losing her independence. 

    But, being and feeling connected with you is a blessing, your presence is a blessing. Be there. Don't go behind her back. Ask her, can i call sis? Perhaps in her presence, call sis and say, Mom, sis is on the phone... Or just be present. 

       It's a start and a crucial one.

 

What do you think? Share more? Glad your stepdad at least got a diagnosis. Thanks for writing! 
Jane

Contributor

Thanks so much for your reply! His POA son is thousands and thousands of miles away...assume he heard of diagnosis through local sib but none of the 4 have called to check on him.  This will sound unkind, but to an outsider it has always felt they were happy to have mom in charge/no responsibility. 

 

We live in a city, just not one that many doctors stay in for long.... also, evidently there are not enough neuros in the country as a whole.

 

 


@JaneCares wrote:

Hi Peggy,

Well this is a hot mess, isn't it? Oy!

Do you live in a rural area? I do, and i know what you mean about waiting forever to see specialists. I live in a county that's the size of Connecticut with fewer than 7500 humans. Not one traffic light in the entire place. But enough about me.

         I used to be a geriatric care manager, and i've been a medical and clinical social worker for 30 years. My own parents were hard to help and now they're gone. I have a few ideas, and please take what you like and leave the rest.

        What you've started to do is awesome, and that's befriend your mom and her husband of 11 years. Getting her and them used to you (and your husband) is a great thing. You obviously have to be super helpful and respectful so as not to encroach on her freedom, because she'll just dig in, and that's how she's perceiving your observations about missing meds, etc, as encroachment. I don't know what your facebook buddies are thinking: it's not that easy to get guardianship, and your sister with the POA for mom and the son of step dad would be the likely guardians anyway, not you. 

      With a diagnosis like he has now, the drugs help but the trajectory is a slow decline, and maybe not so slow. The POA Son should be going to doctor appointments and at least getting a sense of possible futures. If you don't have access to all of their financial information, there's no point in going to an eldercare attorney. 

      I'm thinking, keep ingratiating yourself. Earn their trust. Don't question and spy (so they notice), and be truly  helpful. This may mean scrubbing the bathroom. Or hanging out with step dad so your mom can get her hair done. Or something. Just being in their lives. Eventually (maybe after the holidays? when the other members of your generation are a little less stressed?) you can get into some candid discussions with your mom, and then your sister, and his son. I think family meetings are awesome: there are such cool ways to do those with computers now. with visuals. Ask a teenager to show you how. 😄  

     Meanwhile your mother needs to trust you.  She has the right to be stubborn and make bad decisions. If she is impaired cognitively, she still has the right to be a pain in the tuckus. She is worried that she is losing her freedom, and she is, and not just because she can't remember to take meds, or make her husband take them. It's because she IS slowly losing her independence. 

    But, being and feeling connected with you is a blessing, your presence is a blessing. Be there. Don't go behind her back. Ask her, can i call sis? Perhaps in her presence, call sis and say, Mom, sis is on the phone... Or just be present. 

       It's a start and a crucial one.

 

What do you think? Share more? Glad your stepdad at least got a diagnosis. Thanks for writing! 
Jane


 

I guess we'll just keep on, keepin' on... tho watching what can be improved is incredibly difficult.  And keeping my mouth shut not one of my strong suits...

 

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Hey Peggy!

 

responding to: "Background:  My mom and I were estranged for many years, so my husband and I work very hard to just try to be helpful/social - meals, concerts etc.  I have one sister in far away - she has all the POAs as far as I know.  (again, I have tried to stay out of this convo).  He has 4 children.  Only one lives here - never see her - she thinks my mom has tried to keep her from her dad.  No clue re the validity of that... mom feels like daughter doesn't want anything to do w them.... who knows..."  

 

Lots of family dynamics here, for sure. I wonder why you are try to stay out of the 'convo' between your mom and your sister, or between whomever, when your sister has POA? Is she on top of everything? Aware of the slow decline, cognitively, of your mother?  Since you've gone to the trouble of moving to be closer, seems like an alliance between you and your sister would be a great thing, with you being 'eyes and ears' for her. Her having POA doesn't mean she can override your mom, of course, not until 2 physicians deem her unable to make decisions. But it does mean that your mother trusts her. 

 

I'm also thinking that the daughter who is local might really like to be involved, included, at least minimally in things like social times, going out to Applebee's, or something. Whatever the history between your mom and his daughter, it's time to be one big happy family. I mean, what the hell. His daughter can be a bridge to the brother who has POA.

 

It is a funny dynamic between adult children when elders hook up. I remember meeting my father's fiancee's son for lunch when he was in town. It was awkward. But we both agreed that our parents seemed happy. When my dad had a stroke and was in a nursing home for 7 years, i talked to him and reassured him that my sister and i would take care of all the business stuff, and advocate for him, and the new wife could just visit. Took a lot of work though. 

 

How's it going this week?

 

Jane

 

 

 

 

 

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My sister and I have never gotten along 😕  Not being in touch has felt safest since we just have never seemed to be able to communicate clearly.....

 

Will explore doing social things w his daughter.  

 

First big disagreement w mom since moving here.  Uh oh.  

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@peggy54 wrote:

My sister and I have never gotten along 😕  Not being in touch has felt safest since we just have never seemed to be able to communicate clearly.....

 

Will explore doing social things w his daughter.  

 

First big disagreement w mom since moving here.  Uh oh.  


Ah, I see. Well, you were once estranged from your mom, so perhaps one day... 

What's the first big disagreement? If you want to share.

Good on your for moving and trying to engage. Sounds like a minefield. Don't forget your flak jacket.

 

Feel free to vent/share/ask/advise the rest of us on here. We learn from each other.

All the best and good luck,

Jane

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