Mother has Alzheimer's

sonder247

My mom was diagnosed with Alzheimer's very recently and my parents told me a week ago. I (27M) still live with them. I work so my dad has been the one to really help my mom out (going to appointments with her, ensuring she takes her medication, etc.). I wasn't there when they got the diagnosis, but the neurologist said it was early. My mother is 68 years old and her memory has steadily worsened over the last 3-4 years. She still can do her ADLs, just needs some reminding of certain things and her short-term specifically is not good. My dad said she scored really poorly in that area. There is not a specific question for this post. I have just been told by multiple people that my mom and family will need a lot of support and I should attend a support group and I should be processing my emotions about it. I mean, I work in the mental health field so I understand, but it is hard knowing it is going to get worse and reading some of the stories here are scary. I understand it is reality and disease doesn't discriminate. I'm sad, worried, and scared, ND a bit angry this is happening to my mom, who is so sweet and loving.

I've been spending a lot of time this week with my mom, coming home from work earlier (typically stay later in the evening) and watching TV with her. I recently paid for registration for my mom to take an art class as the rec center and my dad decided to join her. It will be good socialization as my mom only sees her friends maybe once per month and neither of my parents work so they are pretty isolated. I made an appt with EAP at work to see if there are specific resources available for employees or their family members, more for the future (I work for the largest health care provider in the county). I know we want to get my mom on medication as soon as possible. The diagnosis is not a surprise as it has been clear something is wrong for a few years and it has worsened, as I have said. I am just so scared of losing my mom as the disease progresses and feel so helpless.

rosecoloredglasses

Although the circumstances are not ideal, very glad that you found this forum. Coming from a fellow care giver under 30 to a parent who’s young for their diagnosis, I hope you allow me to send all the good vibes and support I can. I’ve been part of this forum for about two years now since my mother’s diagnosis, and the outpouring of love and support here really makes a huge difference. Please know that while this time period is so scary, you are doing a great job by just doing your best with life right now. If anyone’s going to understand what you’re going through, it’s all of us here.

Anonymousjpl123

@sonder247 wow I am so sorry - that is a LOT to take in. So glad you reached out to the EAP. I’m glad both you and @rosecoloredglasses found this forum as there is a lot of great info here.

It’s very normal for you to be freaking out about this kind of diagnosis. It’s very good that you found out early. There is time to put a plan in place. But please give yourself some space to process and grieve.

Hopefully you, your dad, and (if she’s able) your mom can work on this together. That will help. And remember: this is not the end of your life. You will help your parents get through this, but you must also take care of yourself. Even for those of us who are older, that’s pretty crucial.

Ask anything you want about the disease. You’ve come to a good place for answers from people who know firsthand.

sonder247

https://alzconnected.org/discussion/comment/210498#Comment_210498

Thank you for your reply and sorry you are going through as well. I am glad I found the forum too and it is good that this forum has been helpful for you. It is nice to find a place where other people understand what this is like. I'm starting to process my emotions and accept the reality of what will happen to my mom as time goes on.

sonder247

Than

https://alzconnected.org/discussion/comment/210608#Comment_210608

Thank you for your kind words. Right now we really want my mom to be started on some kind of medication. I didn't mention this in my original post, but the other member of my family is my brother. It is hard because he lives across country. We talked to him on the phone and he just learned about the diagnosis Thursday. My dad, brother, and I are all in agreement that we want her on some type of medication. There was some kind of aggressive treatment that involves spinal taps mentioned by the neurologist that could slow down the progression by like 5 months. And I know there is another that is a biweekly infusion but I am early on in the research process. I haven't come across this spinal tap thing my dad mentioned and he doesn't remember the name. I know he reached out to the neurologist but hasn't heard back yet and my mom doesn't have another appointment for two months and it is with a PA. The wait times are so long. It took like 5 months to see the neurologist initially.

I think my mom is having more trouble accepting it. She will say things like it is too early for the medication or a support group or to get into planning for the future, but then my dad or I will stress the sooner, the better. I don't how much is her being afraid or if there are things she doesn't remember about it. But she can still hold conversations and have opinions. I have stopped reminding her that she has already mentioned something several times during a conversation as she just doesn't remember. Like she went with her friend/our neighbor to the garden store today, which originally she was saying she wasn't sure as she didn't shower yet and my dad and I chimed in at the same time that she should go and she did. But then when talking with my brother on the phone, she must have mentioned about going to the garden store and it being hot like 4-5 times in that hour. And she didn't remember that she had turned her phone on and checked the sound was on before she left and Dad ensured she did. She often seems to think her memory isn't as bad as it is as she is forgetting that she forgot, but she knows she is forgetting things, if that makes sense. So she may not realize how severe it is completely. I'm not sure.

concerned_sister

Sonder247, I'm sorry your family is dealing with this. My brother was diagnosed in March, so this is early days for us. He's age 63, and his MRI was suggestive of ALZ. A few comments struck me as I was reading through.

I'm glad you have a brother to bounce things off of. I have an older brother who lives in another state. He's a logical organized type (we have that in common). Even though not present, he's been good at suggesting resources and tasks to accomplish.

As far as medications, not everyone reacts the same to every perscription. In our case, DB has handled Aricept (generic) well. No reported side affects and and he reports improved clarity. Pre-Aricept he frequently would speak two or three sentences and starting going "um, um, um" and it was as if he couldn't finish the thought. That has gone away for now. He will forget things, and repeat himself etc, but he doesn't seem to get lost in his thoughts anymore. He was extremely happy at the difference it made for him. I hope your mom finds something that will be as helpful.

Vocabulary word - Anosognosia. I think I can now say it correctly. Please note your mom is not in denial about her symptoms. It is a feature of the disease that due to the progression of the disease the person affected can no loner percieve their deficits.

H1235

welcome! I personally find comfort in knowledge and planning. I did a lot of reading and videos about dementia progression, how to interact with a pwd, Medicaid planning, legal planning, researched AL facilities and in home care. There is a lot! For me things felt a slightly less scary and unknown with this information. Having legal matters in order and knowing how and where to get help when you need it can save a lot of headaches down the road. Knowing what to say and not say with your mom can also prevent some problems. Anosognosia was one of our biggest problems. Mom thought she could mow the lawn, use the power washer …. And was upset we wouldn’t let her. The neurologist told us when she was diagnosed to see a lawyer right away. I assume a lot of legal things will just go to your dad, but your mom can no longer the backup for your dad. What happens if something happens to him. I know it seems strange to say I found comfort in all this but without it I would have felt like I was wondering in the dark. Hope this helps in someway.

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

Alzheimer's is a challenging diagnosis; EO magnifies the awfulness in many ways. You are all so young to be dealing with all of this— your folks should be looking towards a carefree retirement, and you should be doing all the fun things of early adulthood knowing your parents will be fully engaged in celebrating milestones with you. Instead, you're finding yourself drinking from a firehouse of depressing information with not much in the way of hope.

You said: I think my mom is having more trouble accepting it. She will say things like it is too early for the medication or a support group or to get into planning for the future, but then my dad or I will stress the sooner, the better. I don't how much is her being afraid or if there are things she doesn't remember about it. 

She often seems to think her memory isn't as bad as it is as she is forgetting that she forgot, but she knows she is forgetting things, if that makes sense. 

That's anosognosia as concerned sister mentioned. With my dad, he did recognize that his short-term memory was rocky, but since he could recall random facts from childhood he felt he was just fine. FYI, memory in dementia is LIFO so this is quite consistent with what one would expect. The other piece is that there are other losses early on that are at least as critical as short-term memory— things like empathy, abstract reasoning, executive function and higher order thinking tank early and are often less recognized by the PWD than their memory deficits.

Chug is correct about the legal stuff. Dad will be making the call on doing all this but one piece to remember is that mom is no longer an appropriate choice as his POA going forward— that's best to be you as you are at hand compared to your brother. Ideally a POA needs to be close enough to roll into the ER before they ambulance arrives. Also, I would not recommend, nor would I accept, a co-POA status or split (you do medical/bro does money) with a sibling. This is an effective strategy for insuring your adult children end up as enemies. Dad should also investigate Medicaid planning in the event they don't have unlimited wealth or a LTC policy.

To that end, I would encourage you to have a Plan B in your back pocket should things change drastically. One third of primary caregivers predecease their LO and there's always a possibility for an injury or illness to make the primary caregiver unable to provide care either temporarily or going forward, so you need to have an idea of how mom would be cared for. It's best to tour SNFs and MCFs to be prepared should you need either. Pay special attention to Medicaid status, fees and waitlists.

Medications? There are a few options. The oral medications work by improving function for a time. While they can improve quality of life for some, they don't slow the disease process in anyway it continues running in the background. A lot of people report no real benefit from them, and many discontinue them because of GI side effects.

There is a new FDA approved twice monthly infusion— Leqembi. That's the one that requires a lumbar puncture or amyloid PET scan to qualify for. This does seem to slow the progression somewhat, but the catch is that white men seem to be the group of patients who are seeing improvement. Women and POC don't seem to be getting as much from the medication.

I am in the process of starting the evaluation process with my own mom. My situation is different; mom is almost 20 years older than yours and sadly, this is not my first rodeo so my sense of urgency is not what I would feel in your shoes. When Leqembi came out we talked about how disappointing the results were and decided that if she were ever diagnosed, we probably would not go there given the poor results for women and the risks of brain swelling and brain bleeds. Were she 68, I might feel differently.

HB

https://www.axios.com/2023/07/11/leqembi-azheimers-drug-women-men-efficacy

https://www.nytimes.com/2023/07/06/health/alzheimers-leqembi-medicare.html?unlocked_article_code=1.vE0.B8o1.78q0ojlvnGPp&smid=url-share

sonder247

Thank you for all the comments. The amount of information out there is helpful, but dizzying. I have been disheartened by the news and looking into planning and anxious, but my emotions about it having really been shaken loose since my therapy appt on Thursday and I kind of wish I could shove them back inside. I feel sad, scared, anxious, worried, and angry. Like I want to hit something or scream. It feels like a form of grief. I have cried some. I was having moments of this but pretty good at capping them. I've known for three weeks now and I suppose my emotions are catching up to what I logically know.

I bought a jigsaw puzzle for my mom and I to do together. She likes puzzles. People tell me I need to really value the time while she is still lucid. I am so scared for the future. I was already reconsidering my job, but I am again because it is very stressful being in the mental health field and I will stay later to keep on top of things and I already struggled often. This on top of it just seems too much in order to effectively be here for my mom and help. I've been so lucky in life and much of my life has been stable and now things don't seem stable nor safe anymore. How I envision my future is also quite different. I'll end up losing my mom much sooner than expected and I'll have to watch this decline as you here know all too well.

Thank you for mentioning anosognosia because that has helped me understand a lot. She knows she has Alzheimer's, but does not realize just much she forgets.

It does seem my mom has ups and downs with memory. And thankfully she is very much still her. She is such a sweet and loving person, not a mean bone in her body. I've always been so close with my parents. My dad is taking on so much. I feel bad for him. The whole situation is just awful and no one should have to be in this position. I know saying that changes nothing and is not helpful.

The legal matters definitely need addressing. I have no experience with any of this. It is true my mom would no longer the a good backup. My dad has talked about an irrevocable trust for the house (and maybe other assets?) before in case he or my mom needed to be in a nursing home and with Medicaid's five year lookback. This was well before the diagnosis, like a couple years ago. That question is back and seems selfish and insignificant in spite of other things but I suppose if it is going to do done, it would be now. Time isn't on our side.

And we should get my mom's wishes on certain legal matters now while she can still voice them. God, there is so much. Sorry this is really just a rant.

mpang123

Sonder, I can relate to your situation as well. My mom has Alzheimer's dementia and my dad has vascular dementia. I'm finally getting hospice involved but I'm still working on legal and financial issues. It's all so overwhelming.

psg712

It is overwhelming. One day at a time, one step at a time. It's great that you and your mom can still enjoy puzzles together. It's hard to enjoy the moment and not let the future get so big that you can't breathe, but sometimes focusing on something small like a puzzle helps to settle your heart for a bit. Your parents are blessed to have you along on this hard journey...but it's OK to still have your own young adult life too.