Have any questions about how to use the community? Check out the Help Discussion.

How to move forward?

purplepotatoes
purplepotatoes Member Posts: 2
First Comment
Member
edited February 23 in Caring for a Parent

Hi there.

My mom was formally diagnosed 2 years ago, though we as a family have noticed she has been progressing more quickly than before for the past few months. Unfortunately, her dad, who also has Alzheimer's and lives in a memory home, needed to be set up with hospice care last week. This has caused an even further worsening of her symptoms. I (her daughter) was left to be her sole caregiver for the past 2 weeks and have seen firsthand just how bad it has gotten. Generally, my dad is her caretaker, though he was gone. I've noticed he's also starting to crack under the pressure.

At this point, while mom can get certain tasks done, she really can't do much without having someone next to her the whole time, helping to organize her thoughts and actions. She gets stuck in loops (i.e. reading a page of notes, forgetting what she read, setting it aside, then immediately picking it up again as though it was new. Rinse and repeat). She doesn't recognize that this is happening. Or that we've had conversations about xyz. Or that we already looked at that pile of donations, we can move on.

Setting up hospice for my grandfather proved to have many moving parts that she just could not wrap her head around. Unless I was there to pay attention and document, we would have been lost. She took calls and completely forgot that they had happened (important calls that we were waiting for). She still thinks she's capable. She doesn't want anyone to know about her diagnosis (even though I've had the hospice nurse directly tell me that my mom clearly didn't understand all information). She doesn't want her dad's memory care people to know (even though I'm more than certain they've been able to tell). I did tell the hospice social worker secretly though, because trying to work with her can be jarring with all the repeated questions and no context. Do we continue to secretly alert certain people? Do we try to convince her that they need to know? (When I tried lightly convincing her in the past that people need to know, she gets VERY upset and angry, saying no, people will treat her differently, think she's incapable, etc. She also gets paranoid that xyz could happen, even though it in no way remotely would.)

At this point, I'm lost on what to do. How does one tell her that she's having trouble doing these things, and that my sister or I should be on the primary call list? Do we even tell her? How do we move forward? She's drowning, but she can't tell that she's drowning.

Then, that leads me to my dad. We've suggested he go to support groups, go to therapy, find someone to talk to, but he's refused, saying that he can just vent to my sister and I. He's clearly burning out - he still works full time and is fielding questions interrupting his workflow from my mom full time. What do we tell him? They've always had a strained relationship, so that's not helping either.

My sister and I want to get together with my dad to talk about everything that's happened in the last 2 weeks and what we've been noticing to try and figure out how to move forward, but I want to have ideas and possible solutions to try. Any advice or help that people could offer would be great. We're struggling here. Thank you!! <3

Comments

  • purplepotatoes
    purplepotatoes Member Posts: 2
    First Comment
    Member

    Thank you for your thoughts! One thing that has been making this increasingly difficult in terms of transition to myself or sister, is that for years my mom has been a CPA and was incredibly well-versed in her field. That's been her life, and she hasn't had a life outside of the office, so diverting her energy and attention away from this has been difficult, to say the least. From the way she sees it, without the office, there is no her.

    Do you have any advice on how to address this with her? I'll let all staff and people know about the diagnosis discreetly, but how do I broach the subject with her that I/sis/dad need to be the point person now? Thank you so much for your reply, it's very helpful.

  • H1235
    H1235 Member Posts: 1,980
    1,000 Insightfuls Reactions 500 Likes 1000 Comments 250 Care Reactions
    Member
    edited February 23

    Welcome. It sounds like your mom is actively involved with hospice and care for your grandpa. I can’t even imagine she is capable if she was able to be diagnosed 2 years ago. While she might expect (even demand) control over the situation with her dad, this is not good for her. It’s way more than she can handle and the stress is probably causing her symptoms to worsen. If your dad I’d still working, is she usually home alone all day. This is concerning. People with dementia often have anosognosia. This is the inability to recognize their symptoms or limitations. If she decides to do something she is not capable of while home alone it could get ugly. There is no convincing her she has these symptoms or limitations. It’s best not to bring them up at all ever! The number one rule we talk about here is NEVER try to reason with a person with dementia. Their brain is not capable and it will only lead to an argument and you will always lose! There are a few ways to deal with this depending on the specific situation. First, just do what needs to be done without telling her or getting her input. Another option is to use a therapeutic fib. I know it seems wrong, but if it eases her stress imo it’s worth it. If it doesn’t matter just go along with what she says. Lastly try to distract her with something (treats) or change the subject. Sometimes it take a combination of these and sometimes nothing here will work and she is just going to be mad. My mom lived with my brother for a short time (he works full time). She had nothing to do all day. Some days she didn’t even get dressed and didn’t eat well. Assisted living was good for her. She made friends and participated in some of the activities. Don’t get me wrong, she was so angry at me for sending her there. Eventually we got her on the right medication to help with anger and anxiety. Does someone have a DPOA for your mom? Who is the DPOA for your grandpa? If it is your mom, was an alternate named? It’s time for the alternate to step in. It sounds like your mom needs more care than your dad can realistically give. An in home caregiver could be hired for while your dad is at work. You would need to come up with some explanation/story for why a stranger is there every day. A friend of a friend might work vs hiring a professional caregiver from an agency. But it’s going to be a bit of juggling if they are sick or a no show. Again, convincing her she needs a caregiver won’t work! This route is expensive. Assisted living is another option. This is still expensive, but probably not as bad and your probably going to have to force it, she will never agree. You might be able to find some kind of adult daycare he could take her to every day. You, your dad and your sister need to make this decision. Keep in mind your mom’s safety and your dad’s mental well being is the number one priority. She is probably going to be upset with whatever you choose. I will attach a few links.


  • SDianeL
    SDianeL Member Posts: 3,336
    1,500 Likes 1,000 Insightfuls Reactions 2500 Comments 1,000 Care Reactions
    Member

    H1235 has given excellent advice and resources. One thing I learned here after my husband’s diagnosis was “you can’t reason with someone whose reasoner is broken”. So I repeated that many times to myself throughout each day. Trying to explain things won’t work. Just do what’s best for your Mom. Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Also search online for dementia caregiving videos by Teepa Snow or Tam Cummings. They are very helpful. One more important thing. Your Mom should no longer be left alone for any period of time. She could start a fire, is vulnerable to scammers or may wander off. Come here often for info and support.

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