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CindyBum

Sadly, I find myself needing a place for support. My partner was diagnosed with MCI 3 years ago. This last year, she suddenly was struggling to find words. Seriously struggling. We thought she might have had a stroke, it was such a sudden, drastic change. But, the diagnosis came back again with MCI + extreme anxiety from caregiver stress. She'd spent the last 15 years caring for her father with dementia, then her mother and now they've both passed. We made a move to a more rural, quiet place to live to help with the stress, but she has progressed in her state of confusion. It's clear to us both that she's on a path neither of us ever wanted to walk. Who does? I do not know how I can possibly bear all of this. She's still in the early stages, but I'm already a crying mess. How in the world have you folks managed to not cry all the time? My heart feels like it breaks several times a day.

M1

Welcome to the forum Cindy. You will cry, frequently, and there is heartbreak every single day. Yet somehow when the person you love needs you, you will find a way to do what has to be done. You learn the hard way to take a day at a time. Read a lot of threads here, and you will get a sense of what to anticipate.

You have come to a good place to get part of the support you need. Advice early in the process is generally to get your legal and financial ducks in a row, while you can, and while she can still consent. It will makes things easier later one. See a certified elder law attorney if you haven't already done that.

CindyBum

Thank you M1. We have an appointment with an attorney...after reading a bunch of threads.

I am grateful for all of you already and so terribly sorry we all find ourselves here.

Ed1937

Cindy, welcome. Since you've read several threads already, and you have an appointment, this shows that you are doing the right things. You will make it because you're stronger than you ever thought was possible. We'll help you along the way, so whenever you need suggestions, please start a new discussion. You will find a lot of understanding from caring people here.

GG06

Hi Cindy,

I too was a crying mess when I began to put the pieces together of my husband's behavioral and cognitive problems. Anger, denial, grief, fear, loneliness, were constant emotions. I couldn't sleep and could hardly look at my husband without crying. It was awful. It still is awful, but I've learned to cope better. For me, educating myself about dementia through this incredible forum, books, videos and research studies and getting our legal and financial affairs in order has helped me feel more in control of the situation. I wish I had something magical to say to help take away your sadness. Hopefully, you will be somewhat comforted knowing you are not alone in this horrible journey.

SDianeL

Welcome to the forum. So sorry about what brought you here. My DH was diagnosed 2 years ago. People ask me how it's going and I say "heartbreaking & terrifying" and we just take things minute by minute (no longer day by day). If you haven't already, get the book "The 36 Hour Day" which helped me so much. It was recommended by a nurse whose Mom had dementia. And as others have mentioned, get a DPOA & legal affairs in order. In a short 18 months my DH can no longer read & understand documents nor sign his name. I used the DPOA to do several things that normally would have required his signature. We're here for you. This forum is helping me so much.

Sailor girl

Hi Cindy,

Looking back at the beginning, it was hard to not cry all the time, just the act of swallowing the tears and finding solutions, helped forge the path forward. I never found any books that helped me, so I wrote my own to help others in the early stages. I have tried to honor my DH by passing forward our unique story of finding care in Fiji.

What may sound vastly ambitious and crazy to those who have never had to watch their loved one struggle with the simplest of words or tasks, moving across the world to an island full of beautifully caring people was the best decision I ever made.

I write this to you because you mentioned you moved locations to be in a calm setting to help her with stress. That was a beautiful decision of yours.

I found that crying in the shower was my secret release where no one could hear me, and I came out stronger.

I hope my words bring you some respite. Hopefully some words from my book will help: "I'm the Captain Now, A Sailor's Journey of Care and Compassion in Fiji"

At some point you will realize you need to be the Captain/Chief/CFO/Head Chef and most of all best friend.

ButterflyWings

(((CindyB))) - hugs to you. Ditto to all that has been said. I think you mentioned a sudden change? If so, please have your LO tested for a silent UTI. It causes all kinds of sudden havoc with no traditional symptoms.

I just wanted to encourage you to feel your feelings and then put on your big girl pants as we say here sometimes. Both are necessary for this long walk. Our dire situation surfaced without much warning. I did not know the signs and once we put 2 & 2 together, it was quickly sink or swim. One thing I realized was that I had no tears. Don't get me wrong, I had all the wide range of big emotions, most of all sheer terror and shock at the magnitude of what was happening, and what was to come. Deep sadness, fear, anger, loss, shock and deep compassion for my poor DH, who is losing everything. And initially, he knew it. I can't even imagine that.

I think it was two years honestly, before a single tear fell, and that was unexpectedly while watching a joyous performance virtually. Nothing sad, just touched something or it was just time, and the floodgates opened. I was glad, because it worried me that I was so numb otherwise. I was always a crybaby in a good way, at movies, songs, cute kids, etc. But facing dementia shut all that down for a long time.

I don't know if my thoughts and emotions will reconnect at some point in real time, but I can say I still am fairly numb - 5 years after diagnosis and 6+ since something started seeming "off" at home. So, there is no one right way to manage though this maze. But we are all in this together and wishing you well.

The Alz Assoc. 24/7 800# is also a good option for trained care counselors to connect for support and solutions if you need to talk with someone live at any time. Just to vent, or to ask for help identifying resources or recommendations. They were helpful to me early on, and as you have found - this forum is a priceless lifeline. Someone will post the actual number here soon. I'm not sure where it is located in our new forum format.

Hugs to you.

CindyBum

Hi all,

I can't thank you all enough for the welcome and your willingness to share. It has brought me such relief to know I can say things to a group of such caring people who are dealing with similar issues.

Hugs,

Cindy

Ed1937

"(((CindyB))) - hugs to you. Ditto to all that has been said. I think you mentioned a sudden change? If so, please have your LO tested for a silent UTI. It causes all kinds of sudden havoc with no traditional symptoms." This is something we should all be aware of. Sudden changes should always mean a UTI check is a good idea. There is too much to be gained, and little to lose (time) to have it checked, and ask for the sample to be sent to a lab for best results.

Ed1937

Alzheimer's help line.  1-800-272-3900