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Mom's New Diagnosis

Kpcma
Kpcma Member Posts: 1 Member

Hello All!

I can't tell you how happy I am to find this discussion board! My mom (76) was diagnosed with dementia a few weeks ago following an episode that involved her wandering the neighborhood at 3am and a horrific fall that landed us in the ER with a head injury. She told me that someone had stolen our furniture and she was trying to get it back. She thought she was on her childhood street. All checked out physically.. but she was super confused and does not remember any of it. Since then, my brother installed alarms on the doors and a couple of cameras inside so I can check on her while I am working, as she is alone during the day. She had been slowly declining over the past couple of years but it started getting worse last year. We already had an appointment with a Neuro/Psychologist prior to the episode, they just confirmed what I already knew. I am a medical assistant and have patients with cognitive decline, so I knew what I was seeing.

Since the appointment, she has not had any major episodes as the one that night in July but her confusion in increasing rapidly . She has trouble with timelines, such as how long she has lived in the house we are in (25 years ) and is convinced that we have another home and asks me if I have paid the bills / mortgage there. She introduced herself to family members at a reunion over the 4th. She thinks I am visiting ( i moved home in 2007) or says when she gets home she will do this or that. But… here is the kicker….She still tutors twice a week and does not miss a beat!!

She taught middle school science for 35 years while raising my brother and me by herself. She got her master's degree in education and then went on to teach reading and math to elementary students. She had an amazing career that included teaching teachers to teach science in ways that kids can understand. She has been tutoring since she retired.

For the past 2 weeks, all she has done is cry. She is still there enough to know what is happening to her brain and I believe she is grieving her mind and body, She is terrified. She is worried about being a burden on us. My family is amazing but we are spread out all over the state. We have a plan to move closer to them within this next year, but there is SO much to do and I'm pretty much by myself right now.

She is very depressed and has even said she does not to be here anymore. It is absolutely heartbreaking. We are very close and to watch her going through this… I feel like I am rambling… I guess what I am asking is if anyone has any suggestions. I have made an appointment with a psychiatrist for medication management for depression and something to slow this damn thing down….

My main goal and purpose is to make her feel as comfortable and safe as possible. I just feel so helpless!!! I have read some of your posts and I know I am not by myself in this,,,however…, I have never felt so alone in my life.

Thank you all for listening…THIS DISEASE SUCKS.

Best,

kpcma

Comments

  • towhee
    towhee Member Posts: 508
    Seventh Anniversary 100 Comments 25 Insightfuls Reactions 25 Likes
    Member

    Welcome to the discussion boards. The appointment for depression medication is a good step. It also might help her mental health if there was a way for her not to be alone all day. Are there any adult day cares in your area? Or would it be possible for you to hire someone for a few hours a day? I am sorry to say that the days of her being able to stay at home alone, even with a camera, are coming to an end. If you look in the Group section of the boards you will find one called New Caregiver Help which contains a staging tool and other useful info, especially a link to an article called "Understanding the Dementia Experience".

  • H1235
    H1235 Member Posts: 1,175
    1000 Comments 250 Care Reactions 250 Insightfuls Reactions 250 Likes
    Member

    Welcome. I am glad you found us. I have attached the staging tool and the article towhee mentioned. They are great resources. In my opinion she is NOT safe to stay home alone. When you see her doctor tell them about recent symptoms and ask their advice. We were advised that it was time for Al when mom was not as far along as your mom. What if she decides to fry some bacon and forgets about is and starts the house on fire? Would she know what the fire alarm is. If she saw the fire would she try to get out of the house or put the fire out. Are there steps she may try to use and possibly fall? I could go on and on. People with dementia often have anosognosia. This is the inability to recognize their own symptoms or limitations. This mean they are likely to put themselves into dangerous situations, because they think they can do things they can’t. My mom was in a similar situation living with my brother. She didn’t eat well because she was on her own for food. She couldn’t go outside for fresh air( my mom is a fall risk rather than a wanderer). She was very lonely! Some days she didn’t even bother getting dressed in the morning. She wanted to use the power washer, mow the lawn, go for walks and weed the garden. She didn’t understand how much danger she would put hers in attempting these things. Keep in Mind that even if you move closer to family she still needs 24 hour supervision. To have family cover that is going to be difficult. She can not wait a year for this additional support that is probably still not going to be enough. Without 24/7 supervision you are putting her life in danger. Paid in home care is very expensive and so is an Al facility. Mc is even more expensive and honestly that may be what she needs since Al may not stop her from wandering off. Facilities can have a waiting list so it’s best to plan ahead. If there is any chance medicaid may be necessary, you may want to see a lawyer. The Medicaid program is complicated and each state is different. Does someone have a DPOA for her? If not this is very important. I hope something here helps.

    https://www.medicaidplanningassistance.org/state-specific-medicaid-eligibility/

  • SDianeL
    SDianeL Member Posts: 2,132
    500 Insightfuls Reactions 500 Likes 1000 Comments 500 Care Reactions
    Member

    Welcome. So sorry about your Mom. Just a couple of things: read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Search online for dementia caregiving videos. Tam Cummings and Teepa Snow have good ones. A Geriatric Psychiatrist is usually the best doctor to manage anxiety and antipsychotic meds for Dementia. I would ask for a referral to one. Sadly there are no drugs that will slow down the progression for someone your Mom’s age. After the diagnosis I found Neurologists not very helpful. One question: how do you know she is tutoring properly? Have you spoken with students and parents? It would be great if she could continue to do that but I would be surprised if she can. One of the first things to go in a PWD is executive function.

  • Anonymousjpl123
    Anonymousjpl123 Member Posts: 829
    250 Likes 250 Care Reactions 500 Comments Second Anniversary
    Member

    I’m so glad you found this site!! It has been a true lifesaver for me.

    First, it sounds like you are doing a lot of the right things: moving closer to family, getting health care, and reaching out for help. As others have said, having someone with durable POA is absolutely key. It’s the thing that needs to not go on the back burner since it will help getting her care as she progresses. It was crucial for me getting my mom care - especially when she didn’t know she needed it.

    Second, please be sure you have a strong support network. Until you’re closer to family, it’s HARD to live with a PWD. I know. Even a few weeks was brutal.

    In a pinch, I’ve called the Alzheimer’s hotline and it’s been a godsend. They have trained staff who can help with practical stuff and emotions. And post here as much as you need to. It does help.

  • psg712
    psg712 Member Posts: 557
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    Member

    Welcome. I agree with the others who said that she is not safe to be alone. The example you gave of her being out alone in the neighborhood and getting injured is a good example of why she needs supervision. You can't predict when she will decide she needs to go find a lost child, shop for some urgently needed item, meet with her attorney … no end of real or imagined situations. She is an easy mark for scams or robbery. If she were to get lost, would she know her address or your phone number? I know this is overwhelming but the family needs to start planning for care options. I'm sorry for the grief that all of you, including your mom, are going through.

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