A New Chapter

DiBush

My DH was just recently diagnosed with Alzheimer's.  Though we have known for a number of years that he was cognitively challenged we carried hope that the diagnosis would be different.  DH is doing well with the diagnosis because he doesn't comprehend all of what was said in the diagnosis and doesn't carry details long in his memory.  I have been overwhelmed and feeling little confidence in knowing what to do.  I have done some reading and have found many articles that are interesting and informative.  At this point I am the sole caregiver and am unable to leave him alone.  I truly do not know how to navigate the first steps in the process of acceptance and ability to care for him.  Any suggestions on how anyone handled this first part of the process will be most appreciate.

Ed1937

Hello Di. Welcome to the forum, but sorry you need it. The members here will walk you through the rough spots. Here is a link to an excellent write up about dementia that you should bookmark. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

I joined this site before we had a diagnosis, as many others have. I read just about everything I could read for some time here. I knew just about nothing about dementia, and like so many others, I learned much more on this site than from any doctor.

Yes it was hard to accept what was in the future, but I told myself that all of our lives will end, and I would have to embrace the illness the best that I could to help my wife. I accepted it very soon after joining.

So read all you can to learn what you can to make things just a little easier in your caregiving journey. Feel free to ask any questions you might have, including how to best handle any situation. You will get several replies, then you pick the one(s) you think sound best for your situation. But whatever you do, don't run away from the site because of how much some of the posts might scare you. We're here to help.

Ernie123

DiBush: As previous said you are in the right place to share and get advice on this forum. I personally have learned much from the advice shared here. My DW was diagnosed in 2012 and is now in advanced stages in a Memory Care facility. Every problem and issue I have dealt with over the years has been addressed in this forum. You will find eventually you can offer support as well as ask for it when needed.

My suggestion to you would be to reach out to your local Alzheimer’s Society if you have a branch nearby. They should have counseling for you and your individual situation. Also join a support group if you can. Over the years for me the monthly Alzheimer’s support group I meet with has been my greatest help as a caregiver. Friends and family often don’t understand the stresses and challenges you face but sit down with a dozen other spouses giving care at home and you will quickly find you are with a group that can offer practical advice, emotional support and new friendships.

Sligo177

DiBush,

Welcome to this forum, I'm sorry you need to be here but you will find lots of practical and caring people.  My thought is, do you have anyone you can lean on for help, company, support?  I know that when we first got my DH's diagnosis, I was somewhat hesitant to share it with others - I didn't know what to do either, really.  But I gradually set up a system where I had someone come in for a few hours here and there, and you might consider that if you have not done so.  Being the sole caregiver is tough. 

ElCy

So sorry you have to join us…

The most important thing you need to do immediately is to find a Certified Elder Care Lawyer. This is a crucial step. The CELA will help create the paper you need to be your husband’s legal representative. This has to be done while your husband is competent enough to sign paperwork allowing you to be his DPOA (durable power of attorney). You will also need health care paperwork. The CELA will also help preserve your assets as you go through this very expensive journey.

M1

Welcome too.  Absolutely agree with Elcy that a very important part of the early process is getting your legal and financial affairs in order, if they are not already.  Part of this--a sad part--if that if he is named as your executor and.or power of attorney in your will, you have to change that too.  He can no longer function in that capacity for you, so your own papers have to be changed/updated.   Having ongoing relationships with people at your bank/s and financial institutions can help, too; the sooner they know about this situation, the better.  Also letting neighbors and family members know--they can really help you nevaigate the process.  My partner (now in memory care) was always very sensitive about whether anyone "knew" about her problems, but after a while it didn't matter because they were obvious to all.  

If he is already at the stage that you don't feel safe leaving him alone, you definitely need to think about how to find help for yourself, so that you can even grocery shop or go to your own appointments.  Church and family supports may be able to fill in here for a while, but you many need to consider a day program (depending on your location) or hiring help at home.  Definitely check with your local Council on Aging--there may be resources available to assist with this that you haven't thought of or known to be in existence. 

The sooner you get your resources lined up the better you'll feel, I promise.  This forum has been a huge, huge part of it for me.  More practical help here than from any "professional" source. 

LJCHR

I recently joined the discussion board (March 23) and it has been wonderful for me.  This is a place you can feel safe sharing your thoughts, concerns, etc.  I feel that I am among people who speak from experience and are living it.  I know that I am not alone in this journey and the responses I have received have helped me tremendously.

I'm so sorry for you and your husband - we are in our 2nd year after diagnosis.  My first reaction was one of disbelief, and then the feeling of deceiving my DH for going "behind his back" on certain things (now I know it has to be done).  It is a long adjustment period transitioning from a wife to caretaker.  I also second guess myself a lot - is he really as far along as he is? is it my imagination? But our daughter confirms my observations and then it gets real...

My best to you.

Denise1847

Dear DiBush,

Welcome!  I am sorry you need to be here.  I will just add a couple of suggestions to what the group has already stated.  If your husband can use a simple phone, there is a RAZ phone for dementia patients which can be set up with just faces on it.  I purchased one a couple of years ago and it has allowed me to leave the house for an hour or so to get groceries etc.   Just google "dementia phones" or if you would like, I can try to send you the link.   I also purchased an Apple luggage tag and put it in my husband's wallet.  I can track him on my phone in case he should wander.  Also, read "the 36 hour day".   It is the most comprehensive book I have come across.   I hope these help.  Most importantly, take care of yourself, do whatever you need to do to protect your inner peace.  I have gotten very close to God and it has helped.   I feel His presence and it helps me get through.

RCT

Offering a warm welcome …this is a wonderful forum to vent and get sound advice….I agree that getting the legal and financial aspects taken care of right away is important. That will give you peace of mind and let you focus on becoming a caregiver..it takes time to learn how to navigate as it requires constant change as your husband changes. I recently took an Alzheimer caregiver course that was most helpful. There are many resources to help you. I agree that if he cant be left alone having help come in is essential so you can stay healthy.  One day at a time!

Another Day

DiBush - Welcome to the family. Sorry for the reason you're here, however the people here are unbelievably open and super helpful. I only joined in January, and already through the advice from here my life is changing for the better. We've got  rocky road ahead no matter....

My DH is still undiagnosed, with the help of the people here guiding my steps, we're getting there. It's just one day at a time. There's already great advice for you here, so I will only add a little. Calming, peaceful music is currently working for us, be careful his diet, my DH is affected by what he consumes. Also be careful of what influences his moods. Here things like the evening news, phone calls or visits from certain people can alter an otherwise good day. I've had to back the evening meal to an earlier time, dealing with sundown. I have no idea how long it lasts. The most important thing though is to keep your relationship with God front and center. If you and your husband prayed together before, keep doing it. You may have to initiate the prayer, but he'll join in as he can. 

 I'm a solo caregiver also, find your outs and your support where you can. I can still leave my DH for short periods of time, but I see that coming to an end in the not so distant future.

I don't mean to scare you, but the next part is for real. He may become aggressive. My DH has injured me, it was a physical attack and it took me months to heal. Be on guard for this. This happened to me before I joined this group, and it affected me not only physically but emotionally as well. It's not that uncommon, others here have faced the same thing.

You found the right place.