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

Caregiver for Brother Mid Stage Alz question

Lynneheygster7
Lynneheygster7 Member Posts: 7
First Anniversary First Comment
Member
in I Am a Caregiver (General Topics)

I am female, and the lone caregiver for my twin brother who lives with me. He is on the downside of mid-stages Alzheimer's and symptoms are speeding up. We are soon to be 70 years old. He cannot drive, can barely write his name and cannot do numbers at all. Moves very slowly and is beginning to have trouble finishing sentences. He is demanding to fly across country to visit a place he used to live and stay for an extending period of time. He is demanding to go alone because, of course, he doens't think the Alz's affects him. And I have no right to hold him prisoner or tell him he can't take a vacation. I do not want to travel across country with his condition, or travel at all currently for many reasons. And its also possible he would not get on the plane to come home. Has anyone else delt with this? I'm running out of excuses. Suggestions?

Comments

  • M1
    M1 Member Posts: 6,788
    1,500 Care Reactions 1,500 Likes 5000 Comments 1,000 Insightfuls Reactions
    Member

    Welcome to the forum. Do you hold his power of attorney for healthcare and finances? You are likely to need it in any event and if you don't have it, your first call tomorrow should be to a certified elder law attorney.

    If he can barely write his name, it doesn't sound like he would have the executive function to make plans for this trip without your assistance. So hard as it is, you just keep putting it off. You couldn't get through to the airline, the phones/Internet is down and you're waiting on a call back, etc. White lies/fiblets are necessary, much as it may be counterintuitive at first. You may be so used to assisting him you may have forgotten that you have the right to say no. You shouldn't let him do this any more than you would let a toddler run in the street.

    Wanting to go back to a fondly remembered place is pretty common- for my partner it's to her childhood home in Texas. If he has a lot of anxiety about this, you may want to talk to his doctors about medication to tamp it down.

  • Lynneheygster7
    Lynneheygster7 Member Posts: 7
    First Anniversary First Comment
    Member

    Thank you for your message. Yes I already have POA in place over everything, and guardianship as well. I love your suggestions. I understand the sadness of missing his "happy place" and wanting to be back there. Thank you

  • SDianeL
    SDianeL Member Posts: 967
    500 Care Reactions 250 Likes 500 Comments 100 Insightfuls Reactions
    Member

    the book “The 36 Hour Day” helped me with my husband. Keep delaying and change the subject. Fib if you must. You can’t reason with him. Cancel his credit cards & get control of his finances.

  • harshedbuzz
    harshedbuzz Member Posts: 4,470
    Seventh Anniversary 1,000 Likes 2500 Comments 500 Insightfuls Reactions
    Member

    @Lynneheygster7

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

    You are well ahead of many already having the necessary paperwork in place to act of you brother's behalf and keep him safe.

    My dad spent a lot of time angling to get back to either his place in MD or ideally to the one in FL. He was diagnosed fairly late and struggled with the sudden loss of autonomy; I think he was trying to get away from what he saw as my control of things. I found validation of his desire to go back and using the discussion as a way to engage him in talking about the why he wanted to go typically calmed things a bit. Sometimes I blamed him "being stuck" here on his doctors and said I could plan his return until they ok'd it. Once he shared his plan to drive to FL with my DH and ended his convoluted travel itinerary by asking DH "Which way to I turn when I get to the street, right or left?"

    Fortunately, this was fairly short-lived, a few months later he came to believe he was in Florida.

    HB

  • Lynneheygster7
    Lynneheygster7 Member Posts: 7
    First Anniversary First Comment
    Member
    https://alzconnected.org/discussion/comment/217334#Comment_217334

    My brother wants to go to Maryland also. We were born and raised there. Currently in Texas. Specifically, he want to go to Chesapeake Beach on the water. His happy place. Good suggestions. Thank you.

  • Lynneheygster7
    Lynneheygster7 Member Posts: 7
    First Anniversary First Comment
    Member
    https://alzconnected.org/discussion/comment/217294#Comment_217294

    That book has been mentioned a few times. I need to get it. thank you.

  • sandwichone123
    sandwichone123 Member Posts: 766
    500 Comments 100 Insightfuls Reactions 100 Likes Third Anniversary
    Member

    My dh lives in memory care and wants me to take him out of there, probably on a vacation. I just keep telling him, "Yes, we should definitely plan something like that."

  • Lynneheygster7
    Lynneheygster7 Member Posts: 7
    First Anniversary First Comment
    Member

    Thank you. I do a lot nodding my head yes. Lately, it has not been enough for him. He is getting angry and loud.

  • harshedbuzz
    harshedbuzz Member Posts: 4,470
    Seventh Anniversary 1,000 Likes 2500 Comments 500 Insightfuls Reactions
    Member

    @Lynneheygster7

    If he’s developing agitation, it may be time for medication to dial back the feelings driving this. If his neurologist won’t prescribe something, a geripsych would be a great next step.

    HB

  • Lynneheygster7
    Lynneheygster7 Member Posts: 7
    First Anniversary First Comment
    Member
    https://alzconnected.org/discussion/comment/217720#Comment_217720

    He is on a low dose of Quetiapine and you may be right; time to increase the dosage.

  • Iris L.
    Iris L. Member Posts: 4,414
    Legacy Membership 2500 Comments 500 Likes 250 Care Reactions
    Member
    edited August 2

    The dosage for psychotropic medications must be titrated for each person, because one dose does not fit all. It can take several adjustments over a period of time to find the right dose.

    Also, familiarize yourself with anosognosia. He unaware that he has dementia. You are not holding him prisoner, you are keeping him safe. Do not try to tell him he can no longer do things. Learn the work-arounds that the members use. Do not mention dementia or Alzheimer's.

    Iris

  • Lynneheygster7
    Lynneheygster7 Member Posts: 7
    First Anniversary First Comment
    Member
    https://alzconnected.org/discussion/comment/217847#Comment_217847

    Where and how do I learn the "work arounds"? That is what I am hoping to find. Thank you

  • Gig Harbor
    Gig Harbor Member Posts: 567
    Eighth Anniversary 500 Comments 25 Insightfuls Reactions 25 Likes
    Member

    watch Teepa Snow videos. She has many good ones dealing with all Alzheimer’s related issues. They are on utube.

  • Iris L.
    Iris L. Member Posts: 4,414
    Legacy Membership 2500 Comments 500 Likes 250 Care Reactions
    Member
    edited August 5

    Lynne, read a lot of threads, and you will pick up the work-arounds. You will learn to validate your brother while keeping him safe and keeping yourself in a good condition. Visit Jeanne's group and read the online reading material. Read The 36 Hour Day book.

    Iris

  • M1
    M1 Member Posts: 6,788
    1,500 Care Reactions 1,500 Likes 5000 Comments 1,000 Insightfuls Reactions
    Member

    Another good source is Dr. Natalie at careblazers.com. plus if you read a lot here you'll pick up things you haven't thought of yet.

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

Community Guidelines


Click here to review the ALZConnected Community Guidelines

Categories