New member, mom has something similar to undiagnosed Vascular Dementia

Tobiah7989

Just joined out of desperation... I'm a med-surg RN with plentiful experience with dementia, having worked in a memory-care facility and as a nurse in a hospital who deals with various dementias routinely. My mother had a TIA a few years ago, and I believe another verifieable one in December 2020 (she refused to go to the hospital despite slurred speeach, ataxia, and a BP over 200), and who has for the last 2ish years or so begun displaying drastic personality changes including mistrust, domineering behaviors, memory loss, refusal to see any type of specialist, refusal to take random medications for irrational reasons, and believing that my dad cannot do any simple thing without close supervision and direction- for instance, you absolutely do not add milk to Hamburger Helper. He's struggling to stay sane. My alcoholic brother (40 years old) lives with them. She's way too oriented to go to a nursing home, even for a respite visit. We're trying to figure out a way to get her to see someone in a "family conflict" scenario, just so we can get some kind of professional help. She does have some background as an emotionally-abused child, her dad was a pure *$%&. Genetics? Probably. I have a depressing lack of good advice for my dad, this whole situation is so complicated by her normal orientation with people outside the family. I can't even call my dad on the phone to talk about her, because she's so suspicious of anything he does. She follows him around the house to make sure he doesn't do anything wrong, and constantly corrects him and insists he do things that don't make sense. I have personally witnessed this, it's not gaslighting. Anyone?

jfkoc

Hi....seems like you have three people to be concerned about. That's a lot. 

I am assuming that your brother is a practicing alcoholic. That and the fact that he is living with your parents is a lot to deal with.

Your father needs as much support as possible. You experience with MC makes you especially valuable sine you can introduce him to Naomi Feil and Teepa Snow. You will also be a understanding person to turn to.

Your mother does need to have a formal diagnosis following proper protocol. Treatable conditions really need to be ruled out. There are many ways to get your mother to a Dr. the list does not include telling her she needs to go. One way is to invite her to lunch but first you must stop by the Dr's office for s check up. You do not tell her about the appointment until the last moment. Others will share how they got their loved one to the Dr's.

Meds? you may have to crush them or change to liquid and hide them in food.

Above all please explain to your father that reason no longer works and that your mother is on a different page. Her reality is not his.

Tobiah7989

Thanks for replying! My brother is "in recovery", having been to rehab at least 6 times in the last year. He's currently over 90 days sober, but he doesn't have my dad's patience and frequently gets into arguments with mom. She seems to be super vigilant, constantly monitors dad's actions. I think if we tried to divert her to a Dr. appt unexpected, she would just refuse to go in. She's at such a balance point between knowing how to act normal and being completely irrational. I know she's not doing it intentionally, but it sure makes things more difficult.

I'm starting to think I need to get more involved. That's hard, but I was a hospice nurse for over a year, and I remember telling people all the time that they would do hard things and realize the value of such later. darn*. Words coming back to bite me!

jfkoc

Two more options....the insurance company requires a complete physical or you can say Medicare is requiring. You can actually mail her a letter. The stationary from either can easioloy be created. 

What reading material does your father have?

Quilting brings calm

Call and make the appointment for her... but tell her it is for your Dad and that they need her to be there to discuss his behavior.  Since she thinks that it’s his behavior that needs monitored, this explanation might make sense to her.  If you do not have medical POA or are not on the HIPPA forms, you can still send an email to the doctor outlining your concerns regarding her behavior and explaining that she thinks the appointment is for your Dad. 

The doctor can then lead the appointment and she will probably follow his lead and answer questions posed to her about herself:  or take the clock and questionnaire  test as an example to your dad.  

As you know vascular dementia is due to strokes etc. so your thoughts are probably correct.  

Jo C.

Hello Tobiah and a very warm welcome to you.   I too am an RN and also had a mother with many of the behavioral symptoms you describe; many of the dynamics pretty much the same.   The first thing I had to learn was that in no way could we even allude to the fact she had a problem for which she needed to see the doctor.  To do this caused her increased agitation and to dig her heels in even more.

To get my mother to the doctor, I had to use big fibs.  That was initially difficult for me to do, but when I saw how much got done without meltdowns, therapeutic fiblets became another tool in my dementia toolbox.

NOTE:  My mother was initially misdiagnosed as having Alzheimer's Disease by her primary MD and was placed on meds but her behaviors became even worse.  Using those fiblets, I finally got her to a good Neurologist who sees dementia patients as a routine part of his practice. After exam and a SPECT Scan, there it was, FrontoTemporal Dementia.  Meds had to be adjusted and then we went from there.

Having a behavioral variant of FTD is like Alzheimer's on steroids. Those with FTD do not lose large portions of their memory as a first line symptom as those with Alz's do; they can keep much memory long into their disease process and this can cause MUCH mischief.  It is the high degree of irritability, the agitation and dread over the moon behaviors and dreadful and relentless badgering of her husband that were the major problem issues.  Be careful to monitor for financial mischief; this happened with my mother and it was a severe issue until I was able to get things under control with great effort.

We tried everything to help, but to no avail.  We finally had to approve Risperdal which came with a black box warning, but this was the last attempt to bring relief not only to my mother, but also to her poor beleagured husband whose health had begun to suffer due to her acting out.  It was like a miracle; within a day or two, she was SO much better.  This of course is only one person's experience.  She did well on the med; no confusion nor any sedatation; just so much calmer with the behaviors pretty much resolved.

We cannot permit such behaviors to continue; believe me, it gets SO much worse; my stories of this are legend.   If they are driving us to distraction, imagine how it feels to live inside their head believing all the rigid false beliefs and also feeling them.

We had to say that the doctor's appt. was for my step-dad; the doctor was clued in and I sent him a detailed memo outlining all the changes in behavior, cognition and function and other problem issues; I did this for every appt. with every physician from then on.  She did have a blood pressure issue for which she took pills and she valued those; she also had a back problem that cropped up now and then so . . . .

Needed that Neurologist to obtain an accurate diagnosis for actual type of dementia and to initiate meds as all lesser measures to assist were of no avail.  For this visit, it was for her back discomfort fiblet; Neuro was clued in.

Another time to get her to the doctor when she adamantly refused, the doctor's staff and I worked together. Remember, she valued her BP pills. So; the office called and said that, "Mrs. Smith, doctor was screening patient charts and he found that it has been so long since he has seen you, he can no longer refill your blood pressure pills until you have been seen by doctor again; that is as Medicare rule."  Then after complimenting her as to how much they had missed her, they said, "Oh by the way, we do have a few appointments open, would you like one before they are gone so the doctor can continue to refill your BP medication?"  Well; she had the appt. made then and there.  Oh the things we find we must do!

It was so important to get her on helpful medication as her dreadful behaviors soon became a 24 hour problem issue; poor step-dad was not getting any sleep. By this time, I was vibrating like a piano tuning fork.   One other option would be that if she gets to the doctor for assessment, there is also the possibility of having her admitted to a GeroPsych Unit for 24 hour assessment and initiation of medication with overight for effectiveness and any side effects.  That of course is when all else fails.

Do not forget to support your father, he is suffering.  My mother refused any outside help and nothing new could be brought into the house.  She also developed food delusions which were a huge problem for both her and step-dad.  My regret is that I was not able to get her to care much sooner for my step-dad's sake; he really suffered.

My guess is, that after dementia specialist exam, your mother may well indeed have a behavioral variant of FTD.  Finding  a way to get her to care may take awhile, but continue on, it will eventually happen.  I used to even wish for a need for an ER visit so we could go from there, that is how bad it became.

Oh by the way; if you do not have them yet, when she is in a good mood, discuss getting "estate planning" done.  By this, I mean DPOAs for Healthcare and also for Finance for both your mother and step-dad.  I did get this done, but never, ever used the term, Durable Power of Attorney.  The Elder Law Atty was clued in and had done this many times before. I even pretended I was having mine done so she would be on my "estate planning papers," and myself on hers. It worked and the protection was in place.

Keep documenting everything so you have a record of what is transpiring, be careful of the finances which can be a real issue.  I also ran both my mother and step-father's names through the three credit bureaus; my mother had sixteen open credit accounts!  I had to get them closed.  The agencies all wanted copies of the DPOA and it would take two months to do, so I simply called back another day, said I was my mother; had her SSN as well as her mother's maiden name and got the accounts closed on the spot.  No more mischief with that.  If necessary, you may have to monitor the mail or have it sent to a POB or your house if she begins to plunder that.  We also had that as a problem amongst others.

It is good you are on top of this, once you get her to a good dementia specialist, you will be able to get things in line.  If she is ever in the hospital for anything, have a dementia specialist  called in on Consult - one stop shop.

I send you warm thoughts and best wishes from on daughter to another,

J.

CECE33

Hi..I'm new to this group and just looking for some caring friends with similar situations.  My mom was beginning to show signs of mild dementia over the past year or so, but in November, she was hospitalized when she had a volatile reaction to some antibiotics she was prescribed for a lower leg wound.  She was only in the hospital for 5 days, (of course we couldn't visit her) and although she seemed ok over the phone, she came home a completely different person. Mid stage dementia. She always had trouble walking and used a walker, but b/c the hospital staff didn't walk her during her stay, she came home completely unable to walk.    We chose home care over rehab b/c of Covid fears, and  PT's; OT's; CNA's and nurses have been coming to help, but I have done most of the rehab on my own.  My mom is dead weight and she pulls in the opposite direction all the time, so my back is broken !  She always stayed up pretty late, so by the time I get her to bed it's 11pm and then I can start my day, and so I'm up until 1-2am and some nights I can't fall asleep.  Then the routine starts all over again.  I've never used drugs, but seriously considering some type of sleeping aid.  Aside from the physical part, the emotional drain is becoming real.  My mom was forgetting my name, she thinks there are two of me, and she yells at my Dad for taking her to a new place without even asking her (yet she's in her own home.)  She fake cries most of the time and repeatedly says she's "so scared"  I've gotten used to the fact that my mom forgets who I am sometimes, even though she remembers my older sister who literally said she "was not going to be the one" to care for her and went to her home in Florida, leaving me and my Dad to bear the brunt of everything.  That's ok...she just gets in the way, but I"m having difficulty dealing with how anyone can be so void of emotion and compassion.  Plus, she treats me like dirt, so I've blocked her out of my life.  I just don't need anymore emotional drain.   That brings me to today.....it would be nice to just have a friend or two who understands and can lend some advice on the emotional fronts. thanks for listening.

Mint

Tobiah I have no answers, but I am in the canoe paddling with you on your mom issues.

My dad died in 2002, since then I have been the one dealing with her.  Lived with her 15 years, then I bought another home for me and she lives in my original house.  

My mom has very little memory issues but cannot reason with her, very poor social skills and extremely aggressive with all people.  My mom had a stroke in 2019.  Took me five days to get her to go to hospital.  Once she got there totally uncooperative and accused doctors and nurses of making  her extremely high blood pressure up.  Refused all medication. Came home and refused all follow up.  You have the added burden of your dad and brother.

There would be no way to trick my mom into anything.  She is way too with it in that way.

As no longer living with her,  just let her pretty much do what she wants, told my sisters that unless she asks to go to hospital or if she must go there so I can get her placed, will not waste the hospitals time again.  They are way too busy to deal with her noncompliance.  I will do my best to not feel guilty, as anything I have offered to do to make her safer she refuses.  Told me if I got her a medical alert system she would throw it away. Has one landline in house, which is in kitchen and refuses a phone in her bedroom or a cell phone which would be best as she is outside a lot.

Your dad is in a tough position.  He definitely is going to need time to get away, do something he likes to do, meet up with some friends.  At some point may be necessary to place her for your dad’s welfare as the illness can kill the caregiver first.  For me getting away was nice but there was the dread of walking back into the situation.

Hope these thoughts help you in that you know there are others fighting the same battle.

Mint

CeCe welcome to the forum.  Keep hanging out here and reading and you will learn a lot about dealing with this disease.  Also you can come and vent here, as we will get it way better than your relatives or friends who have never dealt with it.

Up in the top right hand part of page just to left of where it says HelpInfo, there is a green rectangle that says add post.  Hit that then you can start your own thread and will get more responses since it will not be buried inside someone else’s.  

Not unusual for one family member to get stuck with the load.  You will see that a lot here.  There are families though that work well together, what a blessing.