Feeling So Lost

jomarie1951 · October 3

Hello everyone,

I’m thrilled to have found this site. I have been feeling so lost, confused, sad, and hopeless.

my husband of 54 years was diagnosed with Alzheimer’s over year ago. He is progressing rapidly and as I continue to just try with all my strength to make it through another day, I’m thankful to have found this community and hopefully to not feel so lonely. Most days I feel like I’m swimming in molasses when trying to get to just know who I am. I never thought this could happen, he ha lays been my best friend and soul mate - Since high school in 1968. Now, he doesn’t know who I am, we sleep in separate rooms, and don’t speak. I m hoping to find a virtual support group in Florida.

This would disease is weakening me and I’m beginning to see how very much I am also affected and going steadily downhill with my own health. I can’t sleep or eat, I weighed 135 pounds before my husband wa diagnosed ND NOW WEIGH 76 pounds.

I look forward to getting to know all of you and will certainly add this community to my prayers.

CindyBum · October 3

Hi JoMarie. Welcome, though I'm so sorry you have had to join our group.

I'm so sorry to hear about your dear husband and your own suffering.

We are here for you and understand the molasses and the heartbreak of the loss.

Hang in there. I would be so lost without this group of generous, kind caregivers.

tonyac2 · October 3

Hello Jomarie, I’m so sorry that you had to find us, that life has brought you to this place. But I’m so glad you’re here. I don’t know anyone face to face that gets what I go through on a daily basis like this group does. The people here have been a godsend for me as I care for my DH. You’re in the right place and you’ll get advice/feedback from people that far more experience than I do. I’m a better caregiver today because of this site. Welcome.

annevd1974 · October 3

Hi, my name is Anne and my husband is 72 and also suffering with Alzheimer’s. We’ve been married 51 years and I feel your pain. I often wonder who I am and I am worried about you! Please get some help. Get a therapist (mine is virtual so that I don’t have to leave the house). It’s very helpful to talk to someone who can help you think through these challenges. Your health is extremely important so please take care of your own health, including your mental health. I am reading the new book by Bruce Willis’ wife (book’s title is “The Unexpected Journey”). It is extremely helpful and there is much emphasis on taking care of yourself, the caregiver. It’s a proven fact that if we, caregivers, take care of ourselves, we are better able to care for our loved ones. I hope and pray that you get some help, even practical help from family or friends to take a a bit of the burden off of you.

SDianeL · October 3

Welcome. Sorry about your husband’s diagnosis. I recommend the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Also search online for dementia caregiving videos by Tam Cummings and Teepa Snow. Come here often for info & support or to vent. We understand how you feel and what you’re going through. 💜

trottingalong · October 3

Welcome to this amazing group of people. All of us are on a road with more curves than we could imagine. Your priority also has to be you. It’s easier said than done, I know. You are grieving the loss of all you have known for so many years. I hope you find help soon and learn to take care of yourself. That much weight loss is not healthy for anyone. When my first husband died unexpectedly when I was 32 with two young children, I couldn’t eat. I’m a small person like you that dropped weight quickly. My mom would sit and tell me that food would make me feel better and help ease my sorrow. It wasn’t easy, but I forced myself to eat high calorie foods and I did begin to feel like I still had fight left in me. The grief was there, but I was better able to navigate life again. Please keep us posted, we are all in this together.

Sunfish47 · October 3

Oh my gosh, I am very worried about YOU, not DH !!! You must try to help your own self at this point.
However much you yearn for your former life with your long time sweetheart, it’s different now, this has happened, and your husband can’t help it.
His journey will progress at a pace you can only watch from the sidelines, and try to take care of him as best you are able. Get help from family members and friends if they are willing, but please realize you cannot control this sad situation and DH can’t help it, and so you must accept it.
The only thing that is now within your control is your own health, and with so much weight loss it appears to be going down hill.
Please try to accept the reality of this horrible disease and take the steps to get your own health back.
You can’t deal with DH alz and make good decisions for him if you’re not in good health yourself. You must do it for yourself and also for him.

Michele P · October 3

Welcome to our group. All of us feel your pain and sadness. I am reiterating what others have said as far as advise. The priority right now is YOU. You have to find a therapist and/or a support group to help you through this. I have a therapist who I see virtually with an in person option. Along with this supportive group, it has put my head in a better place to handle each day as it comes. I can’t look at what will come next. That thinking was detrimental to my health. Take one day at a time with a lot of self care. Come back here for help. ♥️

jgreen · October 3

Hi, Jomarie. I too recently joined the discussion boards. So sorry you have to be here, but you’ve made a good choice.
Read and take heed of all the words of wisdom from those who have already responded. YOU need to concentrate on yourself first and foremost. Then you can support your DH.

After you get your self-care started, I recommend locating an Elder Care attorney. These people can help you navigate all the intricacies of wills, power of attorney, trusts, and institutional care if any of these are needed. And they can assist with keeping your income and assets intact as any type of in-home or institutional care is terribly expensive.

We are all on our own journeys with this terrible disease. There is much understanding, empathy, and love for you! Take care of yourself.

Chris20cm · October 3

https://alzconnected.org/discussion/74274/feeling-so-lost

https://alzconnected.org/discussion/comment/255198#Comment_255198

Welcome to this encouraging club, where I assure you that you will find insights and ideas for coping with the challenges we face in caregiving.
I am reading a book by Pauline Boss called "Loving Someone Who has Dementia." It's loaded with tips to reframe our difficult situations and learn strategies for self care.
Reaching out to others is a critical part of getting through one day at a time, so I am glad you are here. The people here understand and appreciate all you are doing.

There is hope, despite the ambiguous loss of our soulmates. We have to learn new ways to live and make sure we don't get isolated.

"Travelers to Unimaginable Lands" by Dasha Kiper has some very helpful ideas.

Thank you for reaching out.

Chris20cm · October 3

cavenson · October 3

Jomarie, You are in our prayers. We are worried about you. Please see a doctor immediately to address your dramatic weight loss and feelings of hopelessness. You need respite care. Contact the Alzheimer’s Association Helpline at 800-272-3900. They can direct you to local resources. Is there an Area Agency on Aging in your area? They can also provide help. Please take care of yourself.

lhoots · October 3

I’m new to this site and my DH is 57 next Friday. He was diagnosed 3 years ago with EO FTD, posterior cortical atrophy and mild Parkinson’s. He has significantly declined in the last few months and I’m no longer comfortable leaving him home alone. His main issues now all have to do with toilets and showers. He showers 2-3 times a day because he’s worried he will be smelly. He doesn’t always remember how to go to the bathroom. He requires help with nearly everything. We have been married 31 years and 3 kids have all moved out, ages 21-28. The closest one is 21 and lives 20 minutes away and he moved out earlier this year. My sister in law and her older son with autism live with us and she is the only other person my DH is comfortable with. Her and I work opposite shifts but it’s exhausting for both of us. This year has been the most difficult as my 83 year old father passed away (my kids were amazingly supportive), my chocolate lab passed away at 11 years old, I had a breast lumpectomy right before my dad passed and I became an empty nester. I decided to get 2 puppies (sisters) which I now realize was bad timing but they bring me tons of joy.

trottingalong · October 3

https://alzconnected.org/discussion/comment/255227#Comment_255227

I’m so sorry. I believe having a spouse with early onset has more to navigate during the progression. You have had more than your share of grief this year. We have an old dog and I was asked by a friend to take her 2.5 year old dog. She had been diagnosed with Alzheimer’s. I thought it was bad timing for me, but couldn’t say no. That dog has brought me so much joy and has helped me to walk more and work on training her. Everyone told me I didn’t need the additional burden. Now I feel so lucky. Enjoy those puppies.

BrainFog · October 4

https://alzconnected.org/discussion/74274/feeling-so-lost

hello Feeling!

Welcome. I am new to this site and already find just the simple act of putting my thoughts out there, and having people understand has been very cathartic.

Please keep writing and reading and reaching out. It is so easy to become isolated during this difficult journey.

I lost my father to this awful disease less than two years ago, and it destroyed my mother, despite our best efforts to support her. It’s really hard to take care of yourself or prioritize yourself in any way during this challenge, but it’s something that needs to be done.

Please make sure you ask for help when needed! Even though my father could no longer recognize me near the end, he always knew his wife. His last words were ‘that’s my wife’ when someone pointed to my mom and asked him who it was. She was well beyond wanting to try to have a conversation with him because it was so emotionally difficult for her, so we remind her that those were his last words, and she was truly his guiding light until the end, even though he couldn’t articulate it, he still felt it 💕💕

Denise1847 · October 4

https://alzconnected.org/discussion/74274/feeling-so-lost

I am so sorry you are going through this awful journey. I am very worried about your weight loss. Please see a doctor and also get a therapist. A good therapist will help you through. If you don't already have a power of attorney for your husband, please see an elder care attorney about it. Also, please getting help so you can get out to help change your environment for at least a little while. My DH was diagnosed in 2018 and I took care of him till 2024 when he contracted covid. I thought I would lose my mind for the last 2 years. It really takes a toll on your physical and mental health. I had to place him in memory care where he has been for one year. It is still painful, but I can some semblance of life and can be a wife again.

Thirty percent of caregivers die from this experience. If you can, get help and consider either respite care for him or memory care in the future. God bless you and take care.

Feeling So Lost

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