New to the Group

rcataldo

Where to begin……… I have so many questions/concerns. My aunt of 68 years young has been forgetting things on a regular basis for the last year. It has gotten progressively worse the last few months. She has owned her own business for the last 40 years and has been a independent single women her entire life, she doesn't know how to "take a back seat." With that being said I am struggling with how to navigate this disease. She struggles with giving up control which is no shock to me, but it is very concerning to me. How/when do you tell your loved one that they can no longer live alone or drive or be responsible for themselves anymore. The push back that I get is unbelievable which I'm sure is very normal. I try to think of how I would feel or respond if I was in her shoes and I cant blame her for not wanting to give up any control. She also does not want anyone in the family to know what is going on, even though they all can see there is an issue. This now all falls on my shoulders and I am trying to navigate the best I can but boy is it a struggle. I love her with all my heart and will do anything and everything that I can to make her "new life" the best it can be. Thanks for letting me vent, feels good to get some of it off my chest!!

H1235

People with dementia often have anosognosia. This is the inability to recognize their own symptoms or limitations. It makes things so difficult. The number one rule with dementia you will see mentioned often here is, there is no reasoning with someone whose brain is broken. Trying to reason and explain usually ends badly for everyone. Has she been diagnosed? Will she allow you to go to the doctor with her? A note to the doctor explaining her symptoms before the appointment might be helpful, but if she goes alone she will probably not go through with a followup appointment at a neurologist. Do you have a DPOA? This is very important. If not I would recommend she see a lawyer(hopefully she will let you go with her). I recommend you not mention memory problems as the reason for a lawyer visit. I would suggest that it’s just one of those things that should be taken care of now that she is getting older. Trying to convince her of an urgent need because of her memory loss will not go well. As far as driving and living alone, she might take that better coming from a doctor. The thing is you need to be there to hear it and remind her. She might never tell you otherwise or forget. My moms neurologist told her at diagnosis no driving and no more living alone. Her pcp was oblivious to these problems, so it just depends on the doctor. I have read that insurance may not cover her if she is driving after being diagnosed with dementia. There is so much to do. I have attended a couple of resources that might be helpful.

DBAT.pdf

understanding-the-dementia-experience.pdf

rcataldo

https://alzconnected.org/discussion/comment/251507#Comment_251507

Thank you for all the info!!!! Yes I have POA and I go to every doctors appointment, she has several of the markers for AD, we go on Thursday for the PET Scan to confirm diagnosis and then will discuss treatment. Never thought I would be in this position, just doesn't seem fair to work your butt off your entire life only to retire with AD. I am just so frustrated and realize that it is out of my control, but I just feel so badly for her!!! Thank again!!

harshedbuzz

@rcataldo

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

It's great that your aunt has already protected herself by naming a POA. Clearly, she has chosen well by naming someone who is empathetic and truly has her best interests at heart. Have you read the actual paperwork and become familiar with the kind of POA it is (you'll need a durable POA that survives her incapacity and if it's springing, you may need medical signatures to activate it) as well as what it allows you to do.

One way I have approached some of the "taking over" of IADLs like financials, is to ask to be included so I can be prepared to step in should she be unable because of an illness or something. That has allowed me to become familiar with available funds and typical spending.

Deciding around living alone or driving is quite nuanced. A diagnosis shouldn't automatically take that away, but you may need to check with her insurance carrier. Dad was no longer covered as soon as the diagnosis was recorded in his medical record.

There are often signs a person shouldn't live alone. Look for out-of-date foods in the pantry and fridge. A failure to keep up with housekeeping. Burned kitchen towels or pans might indicate she's not safe to cook. Staying with my dad for a week while mom was hospitalized told me all I needed to know about him living alone.

HB

SDianeL

welcome. Sorry about your Aunt’s diagnosis. Good advice above. The less you tell her the better. She’s not being stubborn. She can no longer reason. Regarding treatment, there really is none unless the person qualifies for a clinical trial. The most the trials do so far is prolong progression by a few months. Ask for a referral to a Geriatric Psychiatrist to manage anti-psychotic medications should she need them. Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. At some point soon you will have to make decisions for her safety without discussing them with her. She will need 24/7 care. If you are unable to provide that in your home, she will need to be placed in a memory care facility.