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I need help!(1)

My LO has was diagnosed with Alzheimer’s in 2020.  He has had signs of it since 2017.  He is probably in stage 4 with signs of stage 5. I’m not doing well. We are together 24/7 and he always wants to be with me. It’s hard. He knows he has it but has no idea of how tough it is to be with him all the time. I try to be patient but get frustrated from time to time and cry a lot.  I’m typically not a crier. I am leaning on our daughter way too much for help and support through texting and I can see it’s getting to her.  She is eternally positive but has no false illusions on the state her father is in. I need help.  I am up before him today so I can reach out here. I live in Mexico half of the year and the US the other half. I just feel trapped and very alone with my feelings. I have lots of good friends and our two kids who are supportive so I’m not completely alone… but I feel alone. Maybe it’s me and I have a hard time leaning on anyone. Even in trying to navigate the alzconnected website I can’t find an online support group, I am just frustrated.  I have a therapist but I hate doing online sessions and it’s just too hard for me to deal with this in a 50 minute session.  There are always connection issues and it just gets too frustrating for me. I like to think of myself as smart, can figure things out, know how to take care of myself, but not here.  Not with this disease,  I read about it 24/7 which is probably not a good thing or me, but I’m looking for my place in this.  Not sure if this matters or not, but I am 21 years younger then him; I am 58 years old. 
Thanks for reading this long post and any words or wisdom you can share I’d really appreciate it.  Thank you.

Comments

  • ChicagoGal
    ChicagoGal Member Posts: 28
    Second Anniversary 10 Comments
    Member

    CD5 - I am so sorry that you are dealing with this.  I take care of my 89 year old mom (but do not live with her) and find it overwhelming at times - so I can just imagine what it is like for you.  Can your LO go into day senior care?  Can you hire a caregiver to come in for a few hours every couple of days?  Anything to give you some quiet, alone time.

    I am sure you will get better advice from others that are closer to your situation.  This site is wonderful and the people posting here are very supportive of each other.

  • jfkoc
    jfkoc Member Posts: 3,878
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    Member

    Good morning CDS...

    I assume you are in Mexico right now and that your children are back in the states. That was probably a great choice before illness struck but now may well make things harder for you.
    My husband was 12 years olders than I and we kept two homes. It was a great adventure in the beginning then impossible so we sold our dream

    Regardless of where you are you will find that there can be  great loneliness  and as the disease progresses this can become more and more true. This you are going to need to adjust to and we will do our best to help    you with this.

    We are  here for you as you manage going forward. Some days you will struggle, somedays you will fall but know we understand and are at your side to help you up,

    Eveyone here  understands what you are going through. We are either living with a loved one who is ill or have lived with one. I am 99% certain that there will be more than one poster who will share their same experience you so please do not hesitate to be open.

    Not only will we share out stories with you we will share what did or did not help us with a problem. 

    Additionally we share information about drugs, placement, legal/financial, medical problems, caregiving and the finding of the same....etc.

    We will hear you. We will respond. Now a word of warning, You may not like all of the responses but please do not let that keep you from continuing. Instead keep in mind that while all are made with good intentions some may not sit well with you. It happens.

    So now the being alone and leaning on your children. Coming here will help that because you will learn that you are not alone. We will be the shoulder to lean on...the ear that hears and the ones who will share with  you no matter the problem...

    The aloneness that comes from the insideous slow loss of the presence of your loved is horrible. We  have all known that loss and the grief it brings. We are here to share that too.

    Judith

  • CD5
    CD5 Member Posts: 15
    10 Comments
    Member
    ChicagoGal,
    Thank you so much for your feedback.  I am considering all the things you suggested, I just think when I am back in the states it will be easier.  Just coming in here and venting, along with receiving feedback and support made me feel SO MUCH better.  I appreciate your response. Wishing you the best for you and your mom on this challenging journey. 
  • CD5
    CD5 Member Posts: 15
    10 Comments
    Member
    Judith, thank you so much for your response. You have it right that we are in Mexico and our kids are back in the states.  It is lonelier as my support system there is stronger. I am so sorry that you went down this path and had to sell your dream,  it’s a tough one, isn’t it?  I’m not sure how I will handle the future but I am trying to just take it as it comes for now.  Much easier said then done. Your message made me feel so supported it actually brought tears to my eyes.  I realized that I just needed to vent and be heard by someone,  it helped me tremendously.  I think I will have to learn to lean into this group a little more than I am comfortable with since the support did so much for my mental well- being.  I feel less alone in this so thank you again for your response and reaching out. I truly appreciate it.
  • eaglemom
    eaglemom Member Posts: 551
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    Member

    You can always reach out the the ALZ Assoc Help Line. Someone is always available to speak with. 1-800-272-3900. Ask to speak with a Care Councilor. 

    eagle

  • Ed1937
    Ed1937 Member Posts: 5,090
    Sixth Anniversary 2500 Comments 500 Likes 250 Care Reactions
    Member
    CD, it's time for you to accept any help you can get. You are a human being, and we all need help at some time. If nothing else, just stay active with the forum. People here care, they will listen, and they will offer suggestions when you need them. Just take the suggestions that sound best to you, and leave the rest, at least for the time being. It sometimes helps just to rant, and that's OK too.

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