New here, looking for support(1)

Teachertee

Hi all,

Stumbled upon this message board when searching for online support groups for my mother and father.  My mom was recently diagnosed with dementia a week ago, after being told for a year that her confusion and issues with getting lost when driving alone were due to her having small strokes.  An MRI was done a year ago when the mention of the  strokes gave her piece of mind for why this was happening.  

Things have been getting a bit worse recently and we encouraged her to return to the neurologist (I took her this time).  An additional MRI took place in early January and she returned to the neurologist to read over the MRI, stating no mini strokes had ever occurred.  She was ecstatic and called me to share what she thought was great news and then when I asked if he gave any idea of what was going on she became upset that he wrote Dementia on her paperwork.

She's diabetic with Type I Diabetes and has had all sorts of problems with her insulin pump lately.  My sister and I suspect that she is miscalculating numbers and she even ended up in the ER and an overnight hospital visit this past summer with an extremely high blood sugar of close to 600.  She still claims this was because she became dehydrated and had nothing to do with problems programing the pump, insulin or any diabetes related causes.

We did talk her into asking about prescription meds to help and she was started (end of December) on Aricept.  Hoping this will help slow the progression, but the neurologist said everyone reacts differently.

*Due to COVID restrictions and my mom being a very social person, she's also dealing with what I think is depression.  She often acts as if there is no pandemic going on, going out to eat inside of fast food restaurants daily with my father. They wear their masks, but my mother often forgets to put hers back on prior to walking around the restaurant or when entering my home.  

Found this site when looking for online support groups for my dad, mom and myself!  Hoping it will serve as a useful resource as we navigate this new chapter. Thanks for making this available and any advice!

Tara

Arrowhead

It sounds like she's in denial. This is common. My wife never did accept her diagnosis. (4 1/2 years ago) I learned to not remind her of it because she gets irritated and insists that she doesn't have it. 

I know that, when the time comes, I will have a hard time giving up my car keys. However, even with someone in the car with your mother, her driving at this stage can be dangerous. When my wife misplaced her car keys, I did not let her know that I found them. Instead of renewing her license, I made sure she got a non-driver ID. Perhaps your father can get her keys (and maybe her driver's license) when she is sleeping or otherwise distracted. (If so, do not let her know) If she should be in an accident, having been diagnosed with dementia, it could bring major consequences. 

Marta

Dear T:  welcome to the boards.  We are glad you found us.

Use of an insulin pump by someone with cognitive issues is likely to end in disaster, as you have already noticed.  Her PCP or diabetic specialist needs to be made aware so that she can transition to supervised subcutaneous injections of insulin.  This will be a huge change and the patient is likely to object, since she does not recognize her limitations (that is not denial, but a condition called anosognosia, where a damaged brain prevents recognition of deficits).

Your father and/or you two daughters will need to take over all of her medications.

This will be very difficult for your family.  If switched to four or more insulin injections per day, your Mom would likely qualify for skilled nursing in-home care for a time, to help you all make the transition.

The second issue is the driving.

She should get her Covid vaccine as quickly as possible since she cannot police her safety measures and is exposing all of you to increased risk.  Hopefully she is in the right age group.

From this point on, your family's motto needs to be something like "Safety First," even if what you have to do to implement that upsets your mother.

Can you get your father signed on with this board?

Teachertee

Thanks, Marta and Arrowhead-

It's hard to even talk to my father without my mother right there!  They are always together and part of that is for safety purposes.  Afraid my father is going to get run down emotionally and is voicing his frustration with her bullheaded stubborn side. I've tried to tell him to let me take her to appointments and he has slowly handed some of that over.

 He does not have a smart phone and uses an old flip phone.  She often answers his phone for him, is attached to their joint email account and is usually the one who answers the telephone (land line) whenever my sister or I call over there.  They put the call on speaker phone so they can hear better or both hear whoever is on the phone.

She's even shown some paranoia about us talking about her, but it is all with good intentions.  I rode along with him to pick up salads for lunch over at their house the other day and before we were even out of the vehicle she was lurking out the garage door!  

We often have to be abrupt and she gets her feelings hurt easily.  She's been calling me and my sister multiple times a day saying the same thing from earlier in the day and not recalling the conversation.  I feel guilty not answering because I worry something is wrong- like when my dad fell in December and hit his head in the garage, I ignored the call because she'd already called several times that day.  She had taken him to the ER and was unable to navigate her way home.

*We enabled the app Find My Friends / iPhone so we can always view her location if the phone is on her.

*We added my name to the emergency contacts on her file with the neurologist and plan to do the same with the general physician.

*I purchased a pill sorter with am and pm boxes and am helping sort her pills for the week.  Planning to take my laptop over and make a chart that I laminate with a photo, dosage directions and a box like a checklist to hang up by a basket for the pill bottles.  There are several white round pills she takes and she's getting them mixed up.

My head is spinning and this is just the beginning!  Digesting everything but we have also been seeing the beginning signs for awhile now.  Hard to get a retired Registered Nurse and Diabetes Educator to let you take over.

Thanks for allowing me to vent here and for the great suggestions.  Greatly appreciated!

M1

Welcome TeacherTee, though sorry you have a need to be here.  Like Marta I am also a medical type, and I agree completely with what she's already told you, that an insulin pump is now an accident waiting to happen.  Someone else will need to take over her insulin dosing, and what you are planning for her medicine bottles and pillminders is also likely not to be enough.  This i say from personal as well as professional experience; my partner is stage 4-5 dementia (read up on the stages, there are many links), and is on a number of medicines for a number of other medical issues.   It's been several years now since she could reliably sort or supervise her own medications, and I have had to physically remove them from her bathroom, take over supervision of the daily pillbox, and take over the doling out of the as needed pain medications too.  Can't use a pillbox when you can't remember what day of the week it is, and can't take a pain pill as needed when you can't remember whether you've taken one already five minutes ago.  She hated it like hell when I first did this, but she's used to it now.

A common thing we see and that we all are subject to, is tending to minimize our loved one's deficits, especially early on as we get used to the diagnosis.  We all want to think it's not so bad, or that we can "cover" for them, or that they're not as far along as they really are with the disease.  Neurologists also tend to downplay the diagnosis; we'll see many who are said to have "mild cognitive impairment" when they're really stage 3 or 4 dementia.  I kind of hear a little of that in your posts, and I think it just takes time for the reality of what you're facing to set in.  It's natural for her to object as well, but I just add my voice to say that you don't want to underestimate her deficits only to end up with a disaster on your hands.  So sorry you're having to deal with it, but this forum is a good place to start and I'm glad you've found it.

MerryJ

My heart is pounding on this first day of looking through all I have read. First I filled out a form asking what kind of diagnosis for my husband. First I was told vascular dementia (he has had some TIA's), then alzheimers. It's very possible that it's both. I was also asked when he was diagnosed. The definitive diagnosis was about 6 months ago. But little things have been noticeable by myself and others for anywhere from 6 to 8 years. So I don't even know what stage he is in.

 I have read some of the suggestions for how to respond to this event or that event. I want to know what best to do in the situations I will face. He has had a few events where he sees people and things that are not there. He talks in his sleep.

I'm scared, but this is it and I feel I will know that I am not alone as I read what others have to say.

M1

Welcome merryj as well. There are many wise experienced caregivers here who can teach you a lot and we all support each other. I would encourage both of you to read widely in the forums and don't feel shy about starting new topics (green button towards the top of each forum page). Ed (who if I may say so is one of the informal mayors of the forum) has a really good link in a recent post about caregiving tips. Great place to start.

Teachertee

Welcome, MerryJ.  Sending hugs and support to you and the other kind caregivers who have been so nice to me with advice and words of wisdom.  Wishing us all the best as we navigate this!