Overwhelmed and not sure what to do.


Hello, I'm new here. I joined because I need advice on how to help my mom. She's eighty years old, started showing signs of dementia and possibly some other cognitive issues over the last three years.
A bit of background; My mother's reasoning has always been questionable since she was a child but it was dismissed as - that's just the way she is - even through her adulthood. She's very rigid and independent so it's been difficult to help her because she believes she doesn't need it. She raised me and my siblings alone, with a firm hand, and was very overprotective, so it's difficult to "tell her" what to do now that she's older.
She lives alone but next door to me. I have a camera set up so I can see when she leaves her apartment but I don't feel comfortable with her going out alone. I usually try to catch her and take her where she needs to go but that doesn't always work. She doesn't drive but uses public transportation, and refuses to use PACE.
She sometimes has hallucinations, which I recently found out from family she had as a child, believing that certain people are doing things or talking about her but when told its not happening she gets very upset. I also recently learned that some nights she doesn't sleep well which makes the hallucinations worse.
For the last 2 years I have tried to get her to a doctor for an evaluation but she refuses to go and every time I or another family member brings it up she'll either start talking about something else or get upset and say she's not going anywhere and that we can't make her.
I've tried calling her doctor's office for an virtual appointment at least, but they block me with HIPAA, even though I'm not asking them for information, but giving it.
My mother also has moments when she forgets how to handle her finances so I have to handle them for her and other information, with her consent. I buy food for her at least once a week but she doesnt like it although its food she buys for herself. Our family has suggested POA but she refuses and says she doesn't need it because its not time for that.
She's often forgets where she puts things, such as her money and always gives a long story, blaming her grandchildren for stealing from her, but when she finds her things and money and I remind her she accused her grand kids, she waves it off or says she doesn't remember saying anything.
I have called every senior organization I could find for our city, looking for ways to get her help, begging, but they all say the same thing - if she doesn't want help they can't force her, especially without a doctors diagnosis, and that she has to show that she is a danger to herself or others which she technically isn't according to them.
I'm exhausted mentally and physically because my mother isn't the only person I have to care for. I'm married with an adult child with a disability. I also work and have been in school for the last 3 years, trying to achieve something for myself but constantly considering quitting because I can't handle all of this.
Some of my family members have criticized me on how I've been handling things, but they don't help at all. I'm not sure what else to do other than wait for my mother to get worse or have the ambulance take her kicking and screaming, which i was told by a social worker would be traumatic for us both. I'm not sure she'd even live through something that extreme but it seems I'll have no choice.
Comments
-
Hi Bohochild - welcome to 'here', but sorry for the reason.
You may have to go for guardianship (if, indeed, you wish to take on the added responsibility). This is a little more complicated and expensive, though. Do speak to a CLEC lawyer (lawyer specializes in elder-care). Some of them have at least a consultation for free. It does sound like you have enough on your plate, though. Someone else just posted that they stopped helping with finances and other issues until their mother would sign DPOA. The only problem with that, though, is that in your case it would be hard to stop her from being scammed.
I'm sorry your family members aren't helping. Unfortunately, that isn't unusual at all. And the doc's office - maybe you could write them a note instead of trying virtual. Your mom has anosognosia. This is not denial, but rather, the perception that all is totally well in their world and everybody else is wrong.
You can also call the alz 24/7 number - 1-800-272-3900 and ask for a care specialist.
I would say do NOT give up on your dreams and school. You are doing something good for yourself, which is excellent, and if you leave, it would only lead to resentment.
I'm sorry you are dealing with 'this'.
1 -
You might want to try subterfuge. Mom, I got a call from Medicare + they said you have to go in for a check up ASAP or they are cancelling your Medicare coverage! Make sure your doctor has information by letter or email prior to the appointment so they are aware of the situation and try to assess her for memory/AD etc. This is a suggestion to at least get her to see a Dr for an assessment.
Your own physical + mental well being is being affected by the stress of all this + if you have to have her transported to the ER because of hallucinations, so be it. She would at least be assessed + you could get some support from a physician that she needs help + possibly a facility
2 -
Hi Bohochild,
I’m so sorry you’re going through this! Your story reminds me a lot of what we went through with my grandmother, who was suffering from what I could best guess was vascular dementia.
I think both of the above commenters have the right idea.I would check with your local state and county government and see what programs exist. As well as any offerings from Medicare/ Supplemental Insurance she might have.
Here in NJ (to my understanding) the process of getting POA for a loved one that is not able to care for themselves or legally consent to a standard POA starts with a letter from their primary care doctor. This is needed to start the application process with the county then a second doctor is needed to confirm the findings of the primary care. From there the legal aspect can be handled by county lawyers at no cost to the family. It’s a long process as the lawyers have to verify the claims of both the applicant seeking POA and the individual the POA would cover. Once all arguments and heard the Judge decides whether or not to grant POA. It’s a large undertaking but at least going through the county the cost is not as much of an issue as with private lawyers. I can’t speak to how it works where you live but I would hope that there are similar programs in other states.
I also agree with the Subterfuge comment. The way it worked for us, I just happened to be with my grandparents when Aetna Insurance called to do a home health consultation. My Grandma wanted to hang up but I chatted with them they were offering a little goody bag and a $50 credit. This ended up being our perfect in to get a nurse to the house to do a cognitive evaluation and talk to her about in home services through Aetna.
Best of luck and try to keep your head up there are more services out there than you might think.1 -
Hi thank you for your suggestions. I'd never heard of anosognosia, I will look into this.
Wouldn't writing a note still some how be blocked? When I called the clinic last month, I asked the rep if I could at least leave a message for my mother's doctor to explain the situation, but she said I could not leave anything without consent from my mother which I believed was wrong.
I don't understand why I'm being blocked at every turn.
Thanks again. I will try the phone number as well.
0 -
Hi thank you. I tried something similar to this twice, informing her she would lose her much needed service and she said she didnt care. I also told her that legally she needed to go in for a check up and that I would be in trouble if she didn't go. I suggested a home visit if that would be more comfortable and she still refused.
She seems to have developed some fear about going to the doctor. Before she retired about 7 years ago, going in for an annual physical was a requirement of her job in which she did on her own. I'm not sure what's happening now.
0 -
Thank you for your reply and suggestions. I tried the state programs here in Illinois and they all told me the same thing, unless she is a danger to herself or gravely mentally disabled there's nothing they can do. One of the social workers I spoke to, who was really nice, said I was in a difficult situation with my mother being so rigid and able to independently care for herself. She said they could come by and attempt an assessment but if my mother refuses to let them in, they can't force her.
I will try all of the suggestions posted here. Thank you again.
1 -
Oh wow, so sorry for what you're enduring.
I've never had issues making appointments, etc., for either parent, but once I was primary POA it was of course easier all around.
You've probably tried to contact another doctor's office to see what happens?
This may not be available, or desirable, but there is a psychiatric hospital affiliated with one of the large systems where my parent's live. It has a specific area for seniors. They were very kind when I talked to them. I ultimately got the one who's behavior was waaay off admitted in patient. That's where the dementia diagnosis came from. I went through a litany of emotions and guilt, but it ultimately worked out in this case.
We're in end stage now, but like all of us here there have been these nightmares on the journey.
I sincerely hope you find a solution that gives you some peace. And don't give up your dreams.
1 -
In the group section of this website is a group for new caregivers. It has a lot of great information. The staging tool is very good and the article titled understanding the dementia experience is also very very helpful. These will not really help you specifically, but in my opinion the more you can learn about dementia the better. I had no idea that some of the odd things I had noticed with my mom were actually symptoms. It sounds to me like she is a harm to herself or others. You are caring for her and without you it doesn’t sound like she could care for herself. Her bills would not be paid, she would have no food and if left on her own may easily end up lost. What if you just followed her the next time she leaves her apartment and see what happens. If she gets lost and confused maybe even call and report her needing help. Hopefully they would take her to the hospital. You are in a tough spot.
1 -
Hi Bohochild - another thing (and sorry if this was mentioned in the comments already) that is an option is calling adult protective services. When my mom was in a similar stage and lived in another state, I visited a lot but she too refused care. Luckily (though it didn’t feel that way at the time) others in her building stepped in. Several called me and someone even called adult protective services.
Having APS go by, ask questions, helped me make the case that getting care was essential. It’s a very hard situation. Vent here as much as you need. You’re not alone.1 -
Hi,
We actually did follow her a couple times. She goes to one particular store. I am using tracking app now to help keep track of her.
0 -
Bohochild, you are dealing with a lot! I hope you have a friend support group, too, that you can lean on. Stay strong. Remember you are trying to do what is best for her. It's beyond frustrating that it seems the only way to prove someone is a danger to themselves is when they are taken in a ambulance in critical condition.
HIPPA does not block you from providing info to a doctor, but that office may have their own policy that does.
Stay strong!0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 500 Living With Alzheimer's or Dementia
- 252 I Am Living With Alzheimer's or Other Dementia
- 248 I Am Living With Younger Onset Alzheimer's
- 14.9K Supporting Someone Living with Dementia
- 5.3K I Am a Caregiver (General Topics)
- 7.2K Caring For a Spouse or Partner
- 2.1K Caring for a Parent
- 187 Caring Long Distance
- 116 Supporting Those Who Have Lost Someone
- 14 Discusiones en Español
- 5 Vivir con Alzheimer u Otra Demencia
- 4 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 9 Prestación de Cuidado
- 2 Soy Cuidador (Temas Generales)
- 6 Cuidar de un Padre
- 22 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 6 Account Assistance
- 16 Help