I am new

Bacciammo · February 24

Good morning,

I"m new to everything and struggling. My husband has memory issues and has gone through a personality change. It has been hard the past 2 years and getting harder. Right now I just need a group like this or some sort of support. I love my friends but they don't really understand. He has alienated some of them lately due to how he acts, although I am sure it is just the illness. I've been suffering from burnout, but this a marathon, not a sprint. I'm trying to take better care of myself. Not sure sometimes how to do that sometimes. I truly just need reassurance sometimes that I will be okay. I'm scared and emotional and struggling. Carla from Northern FL.

jgreen · February 24

Hi, Carla. Welcome. So sorry you are here but glad you found this great group!

You are not alone with being scared, emotional and struggling. Add to that exhausted, frustrated, guilt ridden and so so very sad! Even with all that, we do our level best and wake up each day determined to make it through.

There are recommendations our group offered me and to newcomers. The first being to contact an Elder Care Attorney about durable powers of attorney for you and your DH and also healthcare surrogate. Do it now while DH is still able to sign papers. I recommend meeting with the attorney alone to explain your situation and what you hope to accomplish. Then bring husband along when you sign the paperwork. You do not want your husband to be named as your DPOA - rather a family member or trusted friend. You want to protect your assets as best as you can.

Read up and research this terrible disease. “The 36-Hour Day” was recommended to me and I found it quite enlightening and helpful. There are a few health professionals who have websites and do videos that are also helpful - Tam Cummings, Teepa Snow, and Natalie Edmonds to name three.

Do come back and check in with us often. We do care!

Biggles · February 25

Hi this is the hardest, scariest thing I have ever been through and yes I too was a mess before finding this wonderful forum. Everything you have experienced or are currently going through will have been experienced by someone on this site. Just put it out there it helps enormously. One of the worst things is the abandoning of friends and even relations. Most people can’t cope or understand what you are going through, they are confronted by your partners problems and don’t know where to turn so they turn away. We are in sole command and are the protectors, the carers, the friend of our once wonderful partners. Like cancer or other diseases our partners cannot help having Alz or VD and can no longer control or make sense of what is going on around them. But we are not super human either and we need to understand this awful disease be kind to ourselves and reconfigure our lives. Come here often.

Michele P · February 25

https://alzconnected.org/discussion/75442/i-am-new

Welcome. As others have stated, this is a frightening diagnosis that sends your life into a tailspin. Everyone here is supportive and extremely knowledgeable. You need to take care of your legal documents immediately. In Florida, probate is one year if you don’t have a trust. Find an Elder Law attorney and get your legal documents in order while your husband can still sign documents. Get Hippa forms signed that give you access to doctors and medical records. You will have to take over all finances. Get all account numbers, log ins and passwords. Do the same for phone and computer. Put bills on automatic payments. Contact your bank and brokerage firm if you have on. Have them email or text you when any amount of money is deposited or withdrawn from your husband’s account. Put TILE gps trackers on wallet, phone, keys, purse. It tracks the items and the person through the Life 360 app. If there is a Mayo Clinic near you, get a referral for the Habit Program. It is an excellent program for patients and their caregivers. They will train you on the Brain HQ online games that build new neurons in your brain. Get a plan b in place in he event you can not care for your husband. This will involve touring assisted living/memory care facilities and putting him on a waitlist with a refundable deposit. Oasis Senior Services have offices in Florida. We used them. They were extremely helpful finding an agency for in home care as well as a memory care facility. Free service. Contact your local Council on Aging and find out what services are available including adult day care. Read The 36 Hour Day. It will help you prepare for what’s next. Your husband should no longer drive. Call your insurance company and ask if they will cover an accident- most won’t. You can get sued for everything you own because he shouldn’t be driving. As far as friends are concerned, read Bill’s post, The Calvary Isn’t Coming. Unfortunately, your friends will slowly disappear as the disease progresses. Ones that have lived through this might stick around to help. They are the only ones who get this!
Once you get your affairs in order, make a lifetime of memories now. Live your bucket list and travel while he still can.

harshedbuzz · February 25

@Bacciammo

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

So many people think of dementia as memory loss only, but it impacts so many other aspects of who a person is. From early on there are losses in social filter, losses of empathy, losses in higher order thinking skills and logic as well as increased apathy that can shrink their worlds and isolate their caregivers.

You've already gotten some excellent advice. One thing I would add are that while "friends" disappear, it may be possible for you to proactively protect relationships with your own confidants so long as you don't try to include your DH. My mom struggled with this and moved dad 3 different times in a bid to give dad a fresh start socially and recreate their busy country club lifestyle. She failed miserably.

Every stage of dementia has its own set of hideous challenges and each PWD will present in their own unique manner. That said, this early-middle stage was the most difficult emotionally in our family. Dad still had the bandwidth to be ghastly at times and resist redirection. In many ways, the later stages were easier emotionally and day-to-day.

HB

Jgirl57 · February 25

Welcome Bacciammo, lots of advice already given, but we know how you are feeling. In order to tame my own anxiety I did talk with my primary care doctor and she started me on medication to help with the panic overwhelming feeling so I could do what I needed to do. Managing things on the sly became easier once I could focus and face what was ahead. The best thing you can do for yourself is breathe and take things one step at a time. So sorry you had to find us .

Chance Rider · February 25

@Bacciammo

Carla, I’m sorry for the reason you’ve joined this community but so glad you found it. My husband was just diagnosed last August, he’s late stage 4 early 5.

I was so overwhelmed, depressed, anxious, scared… you name it. I couldn’t focus and, like Jgirl57, I asked my PCP for help toning down my emotions. After 1 1/2 months I’m finally feeling more in control of myself.

My stepson has been great with taking his father for 2 long weekends so I had a bit of respite. I recently shared my husband’s diagnosis with a few people, 2 neighbors and the guy who maintains our pool. All 3 have stressed that I should call on them if/when I need anything. Surprisingly to me, just their very act of listening to me, truly seeing and hearing me has helped me feel less alone. These weren’t people we were close to. It can be hard to reach out and share personal situations, but in my case I’m glad I did.

I hope you keep posting here. I’ve learned so much and have more confidence in my ability to deal with this, because of this community.

Keep taking care of yourself when and however you can.

Eve in Northern California

howhale · February 26

Welcome Carla but so sorry you joined our club. You have found the right place for help, both specific suggestions and a safe place to just vent and cry. You will get excellent guidance here from those who live with this disease. Not much for the theoretical here, we offer real, practical, tried, tips. This site was a lifesaver for me and I only wish I had found it even sooner. Come often, any time, day or night, this group will help you walk this path others cannot imagine in their worst nightmare.

SDianeL · February 27

welcome. Sorry about your husband’s diagnosis. This is the place for info, support or to vent. We understand what you are going through. A couple of resources that are helpful: search online for dementia caregiving videos by Tam Cummings or Teepa Snow. Learn all you can so you can help your husband.