Concerns about my mom and vascular dementia

[Piper2019]

My mom had an ischemic stroke in 2014. At the time she lived long distance from me. She is a widow (my dad died 25 years ago) aged 74. I spent a lot of time with her after the stroke. She didn't have any motor impairment but did get aphasia. It took several months for her to get her speech back, but she did, I would say she got back to about 80% because she would still mix up certain words (saying he for she and inverting other words) but she mentally would know the right word. We would make light of it because I could tell her cognitive function was still good. She got back to her old routine fairly well and continued to socialize with her friends.

About a year later she had a seizure and her friend took her to the ER. Initially it was thought she may have had another stroke but while at the hospital the neurologist witnessed another seizure (which he gave IV ativan to stop it). She had an MRI done and there was no acute stroke but it did show "Moderate chronic small vessel ischemic change without acute infarct.". She was put on an anti-seizure med. In the year that followed she had her neurologist switch her seizure med a few times complaining of "balance problems". She ended up staying on lamictal.

About two years ago she started complaining more and more about her "balance problems" and started voicing concerns about needing to move from her condo because there were steps. That seemed reasonable to me, but then the conversation turned to wanting to move close to me where I live. This concerned me because 1- my mom and I have never had a super tight relationship. To put it bluntly she is a narcissist and wasn't a good mother to her kids while we were growing up. We've all made our peace for our own mental sanity, but also all of us kept a safe distance. She also was very involved with her friends, and especially one friend in particular, her best friend. They spent a lot of time together doing things. Basically she was living her life her way and was content.

I noticed on a visit that the friend kept dropping hints to my husband and myself about my mom "needing to move by me". I also learned my mom had not been going out anymore and was basically isolating in her own place. I noticed some cognitive decline but I didn't really focus on it.

To make a LONG story short I ended up helping her by a condo right next to mine. She moved last Oct.

I must have been in some kind of denial, because what I have seen since she has gotten her is a whole different ballgame. Her memory is shot. In just about every interaction I have with her I see a deficit. For example I didn't know that she can no longer write. All she can do is sign her name. She can't even write out a check. Her friend came to visit last Nov and gave me this big hug with tears in her eyes and said she missed my mom but she was "where she needed to be". Yeah.... this friend has known for awhile, and in private was the first person to use the word "dementia" to me. No doctor has ever diagnosed her. I should add that my mom is good at hiding her deficits for short periods of time. She will keep quiet or blame her old stroke/aphasia.

My mom has an appointment to see a new neurologist the end of March. In the meantime I am having a very hard time as I feel my whole life has been hijacked. My mom won't (or rather can't) meet new people. Twice I have set up lunches with neighbors/friends and both times she was polite but I could tell there would be zero effort to forge a new friendship. She has ZERO interest in the local senior center. Three days after one of the lunches she forgot we even went. Like zero recall of it, including the place we went.

I went to my psychiatrist and took some of her old neurologists notes on her old MRIs. He also works with dementia patients so I told him of my concerns. I asked him if I was dealing with vascular dementia and he didn't hesitate for one second, he said YES.

So here I am..... terrified of both her future and mine. My own depression and anxiety over this is off the charts.

To say I'm looking for support is an understatement.

Thanks to anyone who took the time to read this wall of text. I didn't want my first post to be so long, but here it is

 

[Izzy]

Hi @Piper2019 and welcome to Talking Point.

I'm sorry to read about your situation with your mum but I'm glad you've found the forum. I know you will get lots of help and support here.

From what you've written I'm suspecting you might not be in the UK. You'll find we have members from across the world and the beauty of this site is that you can connect with people who really understand.

I thought that you might find some of the Society's factsheets useful when you need advice on something specific. You'll find them here -

PUBLICATIONS AND FACTSHEETS

This particular factsheet is about Vascular Dementia -

Vascular Dementia.

 

[canary]

Hello @Piper2019 and welcome to Talking Point.
People with dementia are very good at hiding their dementia for short periods of time, so if relatives visit or phone they can be completely unaware of the problems. I didnt live with mum , but used to see her regularly and would phone most days, but it wasnt until she came to stay with me for a long weekend that I suddenly became aware of the huge problems.

This ability to hide their symptoms for short periods is known as "host/hostess mode" on here and it makes life incredibly difficult because unless you live with, or very near, that person you dont see the problems.

Do have a mooch around and feel free to join in any conversations (though do look to see how old they are!). There is a great deal of knowledge on this forum and I have found it very friendly. You talked about a "condo", so I am thinking that maybe you dont live in the UK - we would call them "flats". If you could give your general location then someone who lives in a similar place might be able to give more specific advice about support in your location.

 

[Piper2019]

Thanks to both you and Izzy for the response. Yes I am in the US. I have already found this site to be helpful and am grateful to have found it.

The "hosting" thing is real! I now know her friend had seen it and had concerns for at least a year before I ever had a clue. My siblings still don't really know. They avoid even asking. The fact that this entire thing is dumped on me while they live their lives long distance is a post for a different time, but I am concerned about my mom trying to fake her way through the neurology appointment. I have never said the word dementia to my mother, but the other day she was complaining about her memory and I gently told her - "I've noticed some decline the last year or so" and she quickly got defensive and immediately said "it my meds". She blames everything on taking lamical and how it gives her "balance problems".

So she is in denial. I called the neurology office and luckily the staff member I talked to was very helpful. She told me how to get all of my mothers old records sent before her appointment and advised me to call a week before and talk to the nurse about the dementia concerns, that way I don't have to say anything in front of my mom but the doctor will still be aware.

I feel I have to ease her into this because at some point we need to address things like durable power of attorney. I am already named her medical surrogate (if she becomes incapacitated) but that's it. So I need to get some other things done before she gets really bad.

 

[canary]

She told me how to get all of my mothers old records sent before her appointment and advised me to call a week before and talk to the nurse about the dementia concerns, that way I don't have to say anything in front of my mom but the doctor will still be aware.

This is really helpful. I usually advise people to write a letter outlining all the problems and send it in before the appointment, but this is even better. Yes, Im sure your mum will be in best "hostess mode" for the neurologist, but they will have your report telling them the true state of affairs. I would go to the appointment with your mum too, so that you can hear what the doctor says. Your mum will almost certainly either not remember what the doctor says or "cherry pick" the information so that you dont get an accurate report.. My mum told everyone that she had been told by the doctor that it was just old age, but I had been with her and knew that actually the doctor said it was Alzheimers.

Yes, getting Power of Attorney and wills up to date are very important and really have to be done early.

 

[Piper2019]

Yes you are also right about the cherry picking. A few years back when my mom was going to her neurologist complaining of the "med side effects" I wanted to talk to the doctor on the phone. She always found an excuse as to why I couldn't do that, and never gave me a complete report, or any report really.... just things like "it went okay". I think her "balance problems" are really a form of cognitive decline and I think it was concerning her. On some level I think she knows. I mean she moved away from everything she knew and loved to be right next to me. That ALONE speaks volumes. My own denial didn't help.

No more ignorance for me. I fill out ALL her paperwork now (because she can't write anymore) and I always list myself as a medical proxy so I will not need her permission to speak to the doctors. I definitely plan to go to the neurology appointment.

Did your mother's doctor tell her she had Alzheimers? Did she acknowledge that to you at least? I could see not telling friends, but you were right there, correct? I ask because I am hoping the doctor will be the one to say the word dementia to my mom. Let him be the "bad guy", then I can be the good guy who tells her it's not that bad (it is) but we should get a durable power of attorney "just in case".

I really don't know of any other way to approach it with her. The next I'll need to address is her driving. She still drives! Thankfully no major accidents, but a couple dings from bad parking, etc.

I'm only five months into this and I'm so overwhelmed. It feels like five years.

 

[canary]

Did your mother's doctor tell her she had Alzheimers? Did she acknowledge that to you at least?

Yes, the doctor told her gently, but directly, that she had Alzheimers and there was no doubt about it, but she never acknowledged it. Im going to give you another word now - anosognosia. Its a common, but seldom talked about symptom of dementia where the person is unable to comprehend that they have dementia. Its not denial, but a lack of insight. Usually they have a feeling deep down that Something Is Not Right and are usually aware of some memory problems and, in the early stages, some physical problems, but will usually deny anything that you try and draw to their attention. It can often make them very angry too.
When mum was first diagnosed she dismissed her memory problems and unsteadiness as old age, but once she reached the medium stage she had no idea that there was anything wrong at all and insisted that she was bathing, shopping, cooking, doing housework and laundry when one look at her and her house told you otherwise. Later on, in her care home, she would say that she was as fit as a fiddle (she had a long list of physical ailments), that there was nothing wrong with her and she kept herself very fit by running up and down the stairs. In reality she could only shuffle with the aid of her frame and wasnt allowed to use stairs!
I never talked to mum about her Alzheimers/dementia and only ever referred to it her "memory problems". It was sad that I could never have a proper conversation with her about her health and what she would want, but it seems, unfortunately, to be very common.

 

[Sirena]

Hi @Piper2019
Sorry to hear the reasons which have brought you here, but I'm sure you will find support and help.
In addition to what Canary has said about anosognosia, bear in mind that even if the doctor tells your mother she has dementia, she will probably have forgotten all about it the next day (or even by the time she gets home). If it makes her feel better to think the problems are caused by her meds, or her previous ailments, let her think it - you can still advise her to do a power of attorney even if she thinks this is all due to 'old age'. As is often said, you can't argue with dementia, so take the line of least resistance in order to achieve the result you need.

 

[Piper2019]

Thank you Canary and Sirena. I agree concerning the line of least resistance. It's just so sad to see my mom lose her cognitive abilities. She has always been so fiercely independent. Selfishly independent. So I know she hates relying on me, but needs to, and as much as she can be a handful I also want her to know it's okay.

I'm still learning the finer aspects of having boundaries to save sanity and having compassion despite our dysfunctional past.

She went for a short trip to see her friend. She flew and had assistance the whole time. When I picked her up I was waiting at the gate, and she came walking out and just had this lost look on her face. I was waving to her and she was oblivious until I walked right up to her. That lost look she had just hit me so hard for some reason. Days later and it's still makes me tear up.

 

[Sarasa]

@Piper2019, I can identify with that lost look. At one time I thought it might be due to my mum having very poor eyesight, but it is more like she goes into battery saving mode, and unless someone 'switches her on' by asking a direct question she just sits there.
Like your my mum is fiercely independent and trying to get any help for her has been an uphill struggle. We are slowly getting there, so I guess perseverance is the name of the game.

 

[SaraKate]

I am so sorry for the situation you find yourself in - the more so because you say that your mother was a narcissist and so presumably did not give you the love and care that she is now demanding from you. The absence of a happy childhood for your siblings will perhaps make it easier for them to be invisible when she needs them too. Your future with her is not going to be a repayment of the happy times she gave you, but a real charity - a gift without return. In this case, I hope you can insist that she has other carers and supporters other than you, and that you look after yourself as a priority. If there is no 'banked' love in the past then I feel like you're in danger of drawing on an empty bank account! Keep yourself in balance by being in touch with people who love you, so that you are in balance and have something to give. (I know this feeling!) keep in touch here as part of that, good luck

 

[Piper2019]

I am so sorry for the situation you find yourself in - the more so because you say that your mother was a narcissist and so presumably did not give you the love and care that she is now demanding from you. The absence of a happy childhood for your siblings will perhaps make it easier for them to be invisible when she needs them too. Your future with her is not going to be a repayment of the happy times she gave you, but a real charity - a gift without return. In this case, I hope you can insist that she has other carers and supporters other than you, and that you look after yourself as a priority. If there is no 'banked' love in the past then I feel like you're in danger of drawing on an empty bank account! Keep yourself in balance by being in touch with people who love you, so that you are in balance and have something to give. (I know this feeling!) keep in touch here as part of that, good luck

Sara I only just now saw your reply.

Thank you so much for your kind words. You are spot on. It all feels like a big ball of dysfunction. I did start therapy and have spent a lot of time talking about this very topic. When a person is dealing with a narcissist who was in fact their abuser it makes the caring experience a whole lot different.

I envy those that are giving back out of pure love. I love my mom, but it's not like normal love. It's filled with dysfunctional patterns and scars. Even my obligation to her is dysfunctional. I'm doing the best I can, and therapy is helping.

Thanks again for your response.