New to all this

JandL

My husband was officially diagnosed with alzheimer's 3 weeks ago, in the early stages of this. I have bounced back and forth between denial, anger, tears and fear for what our life will be and for how long. I'm not sure what to do, what the steps are to help him and myself manage this. He has problems finding the words to express what he wants to say, in addition to cognitive issues. It's a struggle and to know that it is only going to get worse is unbearable. I find myself wondering how much time do we have before the next stage of this disease shows itself and what challenges that will bring. I know I need to take one day at a time, but that seems to be a challenge in itself. I want to be prepared as much as possible for not only where we are at now but what's to come. Any suggestions would be greatly appreciated.

Carl46

Sorry you have to be here with us. My wife was diagnosed in 2017 and it has been a slow progression since then. Unfortunately, there is no way to tell how fast your husband's disease will progress. You just have to prepare yourself for a marathon.

A good first step is to see an elder law attorney to be sure you have valid POA for him, both financial and medical, and that someone other than him has valid POA for you. You will have to take control of your finances and management of your household, because his judgment will become progressively more impaired. My wife carries a purse, but it contains no checkbook, credit cards, or ID. I carry her nondriver's license and insurance cards. I manage our medications, appointments, and finances.

charley0419

https://alzconnected.org/discussion/comment/227868#Comment_227868

https://alzconnected.org/discussion/comment/227868#Comment_227868

I do exactly as Carl46 , diagnosed 2 yrs this month with dementia I’m just starting to see more frequent confusion and memory loss on day to day things. It’s sad to watch this as we all get up each morning wondering what today brings, what a way to go into your retirement years. No one said life was easy

Karen711

Hi Jan- welcome to the group and sorry for your reason for having to be here! Everything you are feeling and going through right now is shared by the good people of this group, so just know you are not alone in what you are experiencing. There should be a term for this process which feels like a slowly dawning and recurring nightmare that just won’t go away! Over time you will likely will get to a place of acceptance, though the playing field is ever changing forcing you to develop your adaptation muscles. But you will because you have to.
Carl is right, it’s important to get legal matters straightened out with DPOA for your husband, someone else for yourself, a line of succession. It’s “something” you can do and you’ll feel good about getting it done. Many here recommend The 36 Hour Day, it has lots of information- both practical and sobering.
Let yourself grieve your slow and gradual losses, but also, I try to remind myself - “be here now”, good old Ram Dass, to celebrate and savor the moments my wife is able to show up day to day, moment to moment. I wouldn’t want to miss those moments, even though I have at times when I’m feeling overwhelmed.
Welcome!

Karen

JDancer

Ambiguous loss is what Pauline Boss calls it. They're gone, but not gone. A roller coaster of emotions is to be expected. You're moving through the stages of grief while simultaneously providing 24/7 care. It's the hardest thing I've ever done

Karen711

https://alzconnected.org/discussion/comment/227874#Comment_227874

JDancer, yes, I agree, there is the ambiguous loss to contend and live with. I was referring more to that very dark shadow of a feeling in the beginning when you first suspect something is wrong but can’t and then don’t want to put your finger on it. There’s a heavy frightening feeling to it as you vacillate between denial and reality. Pure dread.

Anna2022

HI, @JandL Welcome to the group no one wants to join.

In my experience, I have found this forum to be more helpful and supportive than anywhere else. Read as many threads as possible. You will find many answers here and the hard-won wisdom of the participants is extraordinary.

There is a lot to take care of in these first few months. Others have told you and it's true - get to a Certified Elder Care Lawyer as soon as possible to discuss legal issues, estate planning and financial long term planning issues. At a minimum, you should look into your estate plan, a durable power of attorney, a power of attorney for healthcare (avoid the springing type) and financial planning for future care (including possibly Medicaid qualification in your state). A good lawyer will help you thru the necessary options and paperwork. Don't delay - You want to get this paperwork in place before your DH can no longer sign documents. If your DH has no insight into his disease (find out about anosognosia) or is unwilling to participate, then at least you can visit with the lawyer on your own and get enough information to make decisions on how best to move forward. My DH and I got this paperwork done early, even tho my DH has/had anosogonsia/absolutely no insight into his condition - IT CAN BE DONE!!

If you have a financial planner, talk to them as well. You will have to take over everything - and your financial life is important!. Get educated as quickly as possible if you have not been participatory in these matters before diagnosis. With a good CELA and a good financial advisor, you will have a lot to do but you will be in good shape once you do it. My financial planner and my lawyer, were helpful in alerting me to issues, answering all my questions and helping me to understand my options.

Please don't forget yourself in all this. Yes, you need to focus on your DH but your well being is of utmost importance. All of us care-givers get overwhelmed by stress and our own health issues at times. Doing what you can to stay healthy and resilient yourself is paramount. Some of the best things I did early on was to find myself a therapist and an exercise routine that I could maintain at home. I found a therapist who sees me online (a super sanity and time-saver) and who has experience working with people who take care of someone with dementia and complex issues of grief. We talk weekly.

Anna2022

Maru

Very sorry that you are here, but this group has helped me so much. DH is still in ES AL but slowly losing our ."shared memories. You feelings of anger, denial etc. are all normal. In our case DH flooded the bathroom floor twice in one week 2 months ago (that made it all too real) and has been fine since…other than forgetting a word here or there and tons of "oh, you know what I mean" kinds of statements.

We were lucky in that we had just finished our Trust and will with POA and everything and had put our funeral plans in place. (We are older than dirt).

You need to assume that whatever needs to be done, you will do it. I have talked to our financial adviser so he knows not to let DH make decisions without checking with me. It is overwhelming, at first, to be in charge of your regular chores and duties and then have to pick up all his as well. If I can do it at age 84 and not in great health, you can do this.

Teepa Snow has some outstanding videos on understanding the what is going on inside the dementia brain and how to interact with that person. You can find them on Youtube.

If you are a religious person, this is a good time to break out the Bible and have it open to your favorite verses of comfort. Mine is open to psalm 18 and I have prayed that with tears flowing down my face. Start a diary of documentation of the small things you see so that you can look back and realize that you are not crazy and that the doctor was not wrong in his/her diagnosis. You can do this, you can do this.

allit

https://alzconnected.org/discussion/comment/227882#Comment_227882

Anna, I've started the process of looking for a therapist. How did you find one "who has experience working with people who take care of someone with dementia"? I would like to choose one who knows what's going on too and not just someone random.

allit

Hi Jan,

Welcome to the community. It takes courage for you to post and be vulnerable in that way. So kudos to you~

My wife was recently diagnosed about 10 months ago when she was 64. So we're kind of new to this too.

This forum is a great resource and I turn to it often. Every reply to your question so far is spot on.

We've also found these podcasts by Anne Fraser that are good. She took care of her parents who had dementia and she has been diagnosed with MCI. She is very proactive and positive.

https://www.youtube.com/%40bringinghopetoalzheimers/videos

Another thing that we found helpful was joining a support group. The one we are in is specific for early onset care partners and the ones they are caring for. We meet online twice a month. Feel free to ask the group if you need help finding one.

Hoping for the best for you and your husband~

Anna2022

https://alzconnected.org/discussion/comment/227886#Comment_227886

Hi, @allit - I found my therapist when talking to my financial planner - he had a client who talked about her therapist and remembered the name. Financial planners and lawyers have all sorts of contacts and can be helpful. Let friends, family, church, etc know you are looking for a therapist - but know that you will need to investigate the names you are given. Also, look on Psychology today and use the search function for geriatric, elders, seniors, grief, life transitions.,.. things like that. Then look at the therapist description. As a former therapist myself - I would recommend that you look at someone who specializes and has interest in a critical few areas (grief, dementia, caregiving, seniors etc) - no one can specialize in all things. Then I would go their website and read to see if their experience and training matches what you need. Don't be afraid to call and chat or book an online first session and see if you like them - and it's OK to say to them at any time that it's not a fit!

Just another thought - maybe don't limit yourself to a therapist in your own town - look statewide. With online sessions as an option, you can see a therapist who is licensed in your state yet lives in another part of the same state. Also, I found that using your insurance to help pay is a good thing! Good luck in your search!!

allit

https://alzconnected.org/discussion/comment/227894#Comment_227894

thanks that's very helpful! i'm also coordinating with my insurance to make sure they are covered. so there's that too. weird thing is when i look at my insurance site for therapists, some category called "behavior analyst" keeps coming up. i wish they had a way to narrow down the category to dementia and caregiving.

Bobbyleft

> @allit said:
> Hi Jan,
> Welcome to the community. It takes courage for you to post and be vulnerable in that way. So kudos to you~
> My wife was recently diagnosed about 10 months ago when she was 64. So we're kind of new to this too.
> This forum is a great resource and I turn to it often. Every reply to your question so far is spot on.
> We've also found these podcasts by Anne Fraser that are good. She took care of her parents who had dementia and she has been diagnosed with MCI. She is very proactive and positive.
>
> Another thing that we found helpful was joining a support group. The one we are in is specific for early onset care partners and the ones they are caring for. We meet online twice a month. Feel free to ask the group if you need help finding one.
> Hoping for the best for you and your husband~

New to this site. My wife is 76 I am 77 and some days I am not her husband. Once she climbed out the bedroom window. Everyday is an adventure. Our daughter is close and occasionally helps out, but I am with her 24 hours a day. Her short term memory is gone. On top of this Our son in Georgia lost his 17 year old son in a car
accident in January. 2024 has been disaster in more ways than one. My daughter and I have visited memory card facilities but trying to keep her at home as long as she or I are not in danger. She does not let me out of her site so it is difficult to talk on phone or be on computer. Sorry for getting off topic but guess had to vent. Take care.

Carl46

My wife "shadows" me as well, to the extent that I have to leave the bathroom door open. I am posting this at 2:10 AM because my sleep comes in fragments and she is asleep, otherwise she would be looking over my shoulder.

APenny4You

https://alzconnected.org/discussion/71136/new-to-all-this

I totally understand about not knowing what is coming. My husband lately has been on a depressed run. He doesn't understand what is going on with him and seeing him like this depresses me even more. I try to explain things, but I know that's a futile effort. I have so many emotions to deal with myself and he was the only one I ever shared things with, now I feel alone and depressed. This website has been such a blessing because now I know I have people to share with and I'm not alone in the emotions I have. My husband is progressing fast right now, but we just take one day at a time. You never know if it's a good day or bad with this disease. Hang in there, you got this!