I need to tell my story of how I am here and how it has affected me

zimmyslilgirl24

I am struggling, and have been masking for what seems like too long. I am burned out. I need someone to talk to about this, it's been a wild ride. I am in need of a listening ear. My husband has been diagnosed and I am really struggling to cope.

Biggles

This is the place to do just that. This is the place of understanding when you can’t talk to others, when family and friends are unaprochable or have abandoned you, when you feel so alone you don’t know who to turn to, this is it. This is the place where no one judges you when only kind understanding words come forth along with very practical advice if you want it. This site is my lifesaver I was a total mess before I found it, visit often we all become virtual friends on the same very difficult journey. Take care.

Michele P

Welcome. You have come to the right place for help and support. If you are near a Mayo Clinic, ask your husband’s doctor for a referral to The Habit Program. It is an excellent program that helps patients and their caregivers. They offer online and in person support groups after the completion of the program. Call the Alzheimer’s number on this site and ask for help. They will help you find a local support group. Get a copy of the book The 36 Hour Day. It will help you prepare for what is coming. If you need help with what to do now with preparing legal documents or keeping your husband safe, ask here. The members here are extremely knowledgeable and supportive. Come back here for help.

tawnyalynne

hello. You are not alone. Mine was diagnosed 2 months after we got married. I cried hard bc it’s just not fair! Compose yourself and be strong for you and him. All we can do is make the best of each day. I started going to therapy and a psychiatrist. They help you with ways to cope and take care of YOU. I also put him on long term care. You can get paid to care for him. I got papers filled out and signed for medical and financial power of attorney. These are steps everyone caring for someone diagnosed needs to do. I hope some of this helps you. Bless you.

Timmyd

I have had several positive experiences when calling the 24/7 ALZ helpline during my lowest moments. They are good people and they will listen to you for as long as you want to talk: 800.272.3900

CindyBum

Welcome, and so terribly sorry you "get" to join us here.

This is an excellent place to let it all out…and I mean it all. We listen and don't judge, because we know.

Big hugs.

Zechys12

My wife was diagnosed with mild dementia last year (2025) and I have watched her change over time. Then, the sundowning kicked in. It was a real gut punch. In the morning, she was about as normal (whatever that term means) as she could be. Then, around 3:30 p.m. her questions would start about where she was, where was home, or that she wanted to go home. I try to be patient and answer all her questions in the gentlest way possible. Unfortunately, last night I failed to control my emotions, and I believe I did more damage than good. I felt entirely helpless and alone. This is not my first rodeo with this terrible disease. I had to go through the same thing with my parents a few years back, and it tore me up then. Now, it feels more emotionally painful because I am absolutely in love with my wife and have been for 22 years and watching her struggle with dementia is heart breaking. She is on Namenda, Vyvanse (She was diagnosed with ADHD in her late 70's) and Zoloft. I also have her on Chinese herbal medicine that targets the brain, as well as Vitamins B2 and B12, Creatine, and probiotics. She also receives acupuncture treatments every week with red light therapy. We try to walk every day, and I encourage her to write her thoughts down to strengthen the brain and body connection. I am literally throwing whatever I can at this disease, and I cannot tell whether any of it is working. The bottom line is that short of a cure, this disease will keep progressing to the point that she will need professional care. The kids do not want to put their mother in a home, and I agree with them after witnessing my parents' decline in an utterly alien environment. My only advice to those who are going through the same thing is to reach out to people who will listen to you, and create happy opportunities for your loved one with dementia. Life is short and this disease is relentless and merciless. God bless all of you and sorry for being so long-winded.

Dio

Welcome (to the group no one wants to join)! I was just where you are when I first joined. This place has been a pillar of survival. Come here to vent, to learn, to cry, to get camaraderie … we understand what you're going through.

WIGO23

So very sorry you are on this journey with all of us here. My DH is in year four since diagnosis and it certainly brings new challenges as this cruel disease progresses. I try to keep to a daily routine because he does better in a predictable environment.

Our world is getting smaller. Our retirement plans have been upended. I come here for tips and emotional support. I find both. I take one day, hour by hour at a time. I mess up. I forgive myself, breathe deep and try again.

No two of us here are having the same experience but there is comfort in knowing there is a place where others understand the challenge, the sadness, the need to vent.

Victoriaredux

@Zechys12

I wouldn't rule out MC forever . Sure no one wants the disease but MC is set up to manage patients with dementia.

What seems a dull, boring, "alien" world to us actually gives the PWD routines that is comforting for their brains.

The disease progress can take years and is very hard on the resident partner overseeing care 24/7 with maybe some respite . Keeping you healthy gives her the best way to get the most complete care. Who else can look after & love her the best?

Maybe do a Plan B and talk to a lawyer about how to get long term medicaid if needed, scope out local MC s and share the results with your children . If an emergency happens you all will know what to do and no one will have to scramble .

Maru

https://alzconnected.org/discussion/76509/i-need-to-tell-my-story-of-how-i-am-here-and-how-it-has-affected-me

Most of us caretakers have been where you are. It is overwhelming, esp. when you first start out in your caretaker role. I like to plan ahead for all emergencies, so I need to know what stage DH is in and what is likely to happen next. Even so, things come up that you are not prepared for. I have needed handholding all along, questions answered and angst to be shared. This site has been a life-saver for me.

tboard

https://alzconnected.org/discussion/76509/i-need-to-tell-my-story-of-how-i-am-here-and-how-it-has-affected-me

You are not alone. Diseases that cause dementia are cruel. I took care of my DH at home until that became my entire life. Now he is in memory care and recently started hospice care. The only thing that has kept me sane, if I really am sane is knitting. Find something you can do for yourself each day and do it.