My mom has undiagnosed cognitive impairment

kseav · July 11

Hello,

I'm new to the discussions. My mom (77) is undiagnosed, but it is obvious she has what we believe is some form of dementia and has for years. She almost never remembers conversations we had, and she is also showing gaps in her long term memory. For instance, she didn't know my husband of 22 years had siblings and was surprised when I told her. My dad told me and my brother that if anything happens to him, she can't live by herself. My dad is not exactly an enabler, but I think they are both scared and therefore have not pursued a neurologist (the doctor told them to). He brings up the subject to my mom, and she freaks out. As of now he is of sound mind for a 78 year old. My aunt (my mom's sister) kindly told me it is really up to me to help my mom since my dad is hesitant. My brother and I want to be involved, but we don't know where to begin. I've already told them I'm going to their Dr appts from now on. I'm going to get a HIPAA authorization from them as well. I need advice, though. What can I do on my end when my dad is basically her caregiver? We are really lost here.

Side note: I am reading The 36 Hour Day.

SusanB-dil · July 11

Hi kseav - welcome to 'here', but sorry for the reason.

It sounds like your dad may be shielding you from her decline. He is scaffolding her, and without him, he probably knows that she probably wouldn't do very well.

Yes - HIPPA accesses and DPOA - from both of them, in keeping on top of that paperwork. A lot of DPOA include a clause for HIPPA.

Maybe bring mom to the doc and tell her she is going 'with you'. If you don't have HIPPA in place, you can still tell the doc, via a note, what symptoms your dad and others are seeing. They just won't be able to get back to you, but can take it all into consideration.

You may want to give dad a break once in a while, as well, for a few hours or even an afternoon or an entire day. Also, in doing that, you may be able to get a handle on how mom is doing. A big indicator is ADL's and iADL's (activities of daily living, and instrumental daily activities) and how she is handling things.

Sorry you are dealing with 'this'.

H1235 · July 11

Attending doctors appointments and hipaa is a good start. Many doctors have an online portal. I would recommend setting that up or getting access to it if it’s available. The most important thing to be done is taking care of legal matters. An elder law attorney is strongly recommended. They will advise, but you will want to make sure things are in place if something were to happen to your dad(or if his decision making skills deteriorate). Durable power of attorney, medical power of attorney and probably a living will. There may be other things that can be done to protect assets. Next I would recommend educating yourself on dementia. There is a lot of great information online. Reading posts here will also give you some insight of what is to come next. It can be very difficult handling a cranky person with dementia. Learning about how to redirect, avoid difficult topics and at times use fiblits is helpful. These things could be shared with your dad. With your dad being older I would recommend keeping an eye on things. He will have a lot on his plate. If he is not the cook in the family it might be nice to make sure he has a handle on that. He may be resistant to help with these things or even in denial about the extent of help she need. As far as diagnosis, they will test to rule out other treatable conditions. I believe there is medicine that may slow progression of some forms of dementia, but don’t get your hopes up. If symptoms get out of control they can be treated. I will attach a staging tool you may find helpful. As problems arise keep this cite in mind. There is a lot of experience here.
https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

M1 · July 11

Welcome to the forum. Honestly, while the medical side is important to rule out any treatable causes, beyond that it may be a wash. Having a practical, concrete plan for how both of your parents are to be taken care of is probably more important, as there is little than can be done medically to help your mother other than manage her behaviors.

I agree that you should probably hold durable power of attorney for healthcare and finances for both of your parents. While your dad may be doing fine at the moment, that could change in a flash. Certified elder law attorneys can help get this important paperwork taken care of. A hard look at their finances is also in order: if one or both required assisted living or memory care, can they afford it? Do they have a home that would need to be sold or put in trust? Do you need to think about getting them qualified for long-term Medicaid? If so, elder law attorneys can also help with this, and regulations vary by state, so usually quite important to have professional input on that. There is usually a five-year lookback at how monies were spent, so it is never too soon to start this planning.

You probably need to have a very frank conversation with your dad about how he's holding up as her primary caregiver. It may easily be too much for him, and he may have a hard time admitting it. You should think about how to relieve him, either with day programs or in-home help, or with residential care for your mom if your dad is truly overwhelmed. Many spouses are reluctant to consider placement, but it can be a relief, and allow him to go back to being her loving husband rather than an overwhelmed caregiver.

kseav · July 11

https://alzconnected.org/discussion/comment/215584#Comment_215584

Thank you so much for your insight. This is so helpful.

kseav · July 11

Thank you so much for all of your advice. Reading that very helpful staging tool was hard but a good dose of reality of what’s to come. And I’ve read many post on this cite so far, and everyone is so supportive and insightful.

kseav · July 11

Thank you for your advice. This is so helpful. I’m making a list of what to talk about with my dad. I want to be there as much as I can for him, too.

My mom has undiagnosed cognitive impairment

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