Looking for advice on my situation with my mother who has dementia

Newbeginning1657

Hi everyone. I am very new here, but I am desperate for any advice that can be given regarding my mother with middle stage dementia and my father who is in denial.this is a very long story.

My mom has suffered a number of illnesses dating back to her teenage years. She has had myasthenia gravis, then lymphoma, and now middle stage dementia. She is now physically healthy, but her mind is going. My father has always taken charge of my mom’s health and had the tendency to do as he saw fit without consulting either me or her siblings.
I noticed she was slowly losing her memory around 5 years ago and begged my father to get her diagnosed with much refusal and the excuse of her just being stressed which she had also agreed to. She was finally diagnosed only 2 years ago as things were getting unbearable for us as a family. I invited her siblings to join us but he withheld the meeting link from me.
Throughout the pandemic years, my father had taught her how to ride a motorcycle (he is an avid motorcyclist) which I had found to be a great danger for someone with dementia. But now it is ingrained in her routine and she is left to ride the motorcycle alone through the streets of the province we live in.
My father leaves her alone for most of the day and for some reason is very hard-headed about us hiring her a caregiver for her. She also has a colostomy bag and still changes it herself. He has also refused to give her medication prescribed by the doctor and gives her lettuce juice and marijuana oil daily as he somehow believes he can reverse her illness with natural remedies.
My father and I have had a strained relationship ever since I can remember and he has recently disowned me for taking my mother to see her siblings on her birthday instead of
attending a trip he had planned. All my input has fallen on deaf ears and I am only trying to do what is best for her. My mother has always stood by my father throughout her life and it is still the same way now.
Her siblings and I are having a family meeting to discuss what to do about her situation at this point in time. I have asked my mom what she wants to do, but she forgets she has dementia and says she is fine. She is deteriorating quickly. And fighting with my dad only leads to him screaming at her and stressing her out. I do not want to upset him further as he takes it out on her. We are also hesitant about sending her money for care because my dad has been known to misuse funds and is already in so much debt.

If there is anyone out there who has input, please let me know. It is heartbreaking watching my mom not get the care she needs as she has always been the matriarch of our small family. in spite of all her illnesses, she has always taken care of my dad and he has been incredibly dependent on her to run the household. She has told me she does not want to leave, but she is incapable of assessing the situation in her condition.

Is there anything we can do to help her?

KMitchell

I am new here as well and my situation is similar to yours. My mom also is physically ok and is able to compensate for some of her deficiencies, so my siblings blow off her comments/actions with statements like "she is manipulative", or "she has always had those tendencies". The Dr said she was moderate/severe but didn't give me a number rating (which I will ask for now after reading some of these posts). I have been her main caregiver and I do have her POA, but one of my siblings took her to the lawyer to change the will after diagnosis so I understand your frustration. Last week I went to a lawyer, the kind of lawyer for this situation is one to handles elder care; wills, Medicare, Medicaid planning, etc.. The examples of what you indicated your father was doing sounds like it falls under the caregiver abuse examples although he probably doesn't even know that is what he is doing. There may be options for you to gain control of your mother's healthcare support and it will most likely be disruptive to your family, but my suggestion is to set up a consultation with a lawyer as the consult will be free and perhaps have her siblings there or call in via zoom or phone. If your dad does not want to cooperate, then you need to decide how far you are willing to go to help your mom.

Keep in mind the things that need to be discussed are not just the current care plan but future medical, like if she needs to go to a facility how will that be paid for as if you live in the US Medicare doesn't cover that, so Medicaid planning needs to start now as it could impact your dads' finances and any real estate he owns. The lawyer can help with that as well, that is what I am in the process of doing now.

I know how stressful and scary it is, I will keep you and your family in my prayers.

Newbeginning1657

Thank you for your reply. It’s nice to know I am not alone, and I am sending you and your family good thoughts. I am an only child, but it must be difficult to have siblings who don’t see what is happening.

I’ll take your advice about going to a lawyer and consulting with them. We are currently putting together a fund for my mom for her future care, but need to find a way to get the money to her and bypassing my dad.

If you ever need support in this difficult time, feel free to message me here. This is a long and difficult road, but thank you for sharing your story. Wishing you and your family the best.

Susand125

I am my mother's sole caregiver. I have. 2 delinquent brothers that have not seen my mother goingvon 7 years. So yeah I'm o my own

This is the hardest thing I've ever done. I don't have alone time. Always doing something. Changing dirty diapers picking her up to transfer to WC the. To bed. Then transfer shsin tonput in recliner. I'm exhausted by the end of the day.

[Deleted User]

The user and all related content has been deleted.

Newbeginning1657

https://alzconnected.org/discussion/comment/172607#Comment_172607

Hi Victoria, I am from the Philippines but I have booked a consultation with a lawyer as per KMitchell’s advice to see what my options are within the local legal system. Benefits in our country are hardly any help, so from what I know it is the best course of action. Although, I will wait for the consultation with the lawyer. Perhaps there are other options worth pursuing. For now her sisters and I are gathering what finances we can to create a fund and system that we can implement eventually.

It’s difficult to say as my father has always been that way to some extent. I am suspecting it is a mix of panic and stress that is making him behave more intensely, but he has always put the family in financially precarious situations. My mother was his voice of reason and kept family assets safe, but now she is completely detached from their work together. I am predicting he will lose most of his assets in the coming years as I have been keeping track of these large loans.

Newbeginning1657

https://alzconnected.org/discussion/comment/172605#Comment_172605

i am so sorry to hear that. It must be incredibly difficult to face that alone. I will keep you and your family in my thoughts.

queensnow

Hello everyone. I'm new here as well. I take care of my mother who has lewy body dementia and her older sister, who also has vascular dementia. I'm the only child my mom had and her sister didn't have any children. She helped my mom raise me. So when my aunt husband died in 2019 I relocated here to Georgia to help support her emotionally at the time. Shortly thereafter she had a stroke. I guess due to grief and not eating properly. She also is diabetic. My mom came up from Alabama at that time to assist her sister. She was in a nursing home/ rehab for about 4-6 months. Eventually she got well enough to come home and receive home health care from an agency. She got better physically and was able to walk on her own. In early 2021 I started seeing signs of dementia with my mother. Finally she agreed to go get tested. Sure enough it was confirmed as a mild case. Since then it has progressed to the lewy body dementia, which is progressing rapidly.
Neither one of them is able to drive or take themselves to the doctor, store, shopping, and complete day to day task.
It's been a challenging battle to say the least. I try to stay humble and thankful, knowing that God has me here for a reason.
Me myself, is disabled with numerous health issues. Mostly arthritis, and polymyositis which is a muscle disease that causes chronic fatigue and pain.
What I'm having difficulty with is them accepting help from outsiders and them feeling like I'm bossing them around when I asked them not to eat certain things that make them sick . Especially my aunt who's diabetic, and my mom who had her gallbladder removed in 2021.

Now my aunt is going through the Sun downing syndrome where she's having these panic attacks at night stating she can't breathe. I've given her the PRN MEDS the doctor ordered but it takes time for it to work.
I mean there's a lot more to the story. I could write a book. I'm not able to leave the house and work part time. So I'm hoping that I can find some resources on this forum, mentally, emotionally, and financial support.
Thanks for listening,
God bless 🙏🏽

Susand125

Firat of all, i'm sorry your going through this! My mother has end stage Alzheimers. I'm doing it alone. my two brothers are no longer associated with mom.So i am caregive, daughter everything she needs olled up in one! It

s the hardest thing i've ever done. I'm not sure how i haven't lost my mind? There are days that i don

t know what day it is? I need to look at my phone! I thought today wasMonday, i waswaiting for her hospice aide to come and do a bed bath. Nope today is Sunday!

akinito60

Hi, This is the first time I'm inquiring about a parent with dementia. It's very difficult to understand the disease and the cause of it. I would like to find out if there are other avenues that I can look into besides Assisted Living to place my mother in a facility where she can be taken care of. She can still take care of herself - bathe, clothe, feed, etc. but her short-term memory is rapidly declining. Can someone please help me find other means to get her some help?

[Deleted User]

The user and all related content has been deleted.

cbea

Hi I am also new and need advise to get my sister to go to a doctor. She lives with me and steadily over the last few years it has been getting worse. Up until recently my brother was home with her all day he just passed. ( I work full time)
She has 3 children but only one really comes to visit. He does not think here memory loss is that bad. Last week I came home from work and parked in the garage.

Next morning I went to go to work and realized that her car parked in driveway was on. I went in and asked her if she was going anywhere and said her car was on.
When she looked at me she did not have any idea that she left her car on.

When I got home from work I said that we should discuss her leaving the car on. That maybe she should go to the doctor. That did not go over well at all. For the most part she is not bad at all.
If anyone has any suggestions how to get her to go to the doctor I would appreciate the suggestion or advise. Thank you.

jfkoc

There is much on this thread that needs to be addresses so...would those of you who are new please copy/edit your posts and start your own thread. This is just you concerns are not buried here.

jfkoc