So scared

teresa123

New here. DH diagnosis of dementia possibly Alzheimer’s. I’m 62 he is 67. My mind is all over with worry. Grief and anger. I know it’s not his fault but I’m so sad I feel every emotion and am having a hard time getting thru the day without crying. I have to work because now I carry our insurance. I hate leaving him and I dread going home. I don’t know what is wrong with me or how to feel better

sandwichone123

Good evening Teresa, There is another post on this board fairly recently recommending that we make friends with grief. This is our lives--losses on losses. If you have recently received the diagnosis, grief and anger are normal. It sounds like you are not really angry with him, which is good, but just angry, which is ok.

This board is a place where all the emotions are ok, because we've either all been there, or we're heading in that direction--or both. It's a welcoming community, because while we wish no one had to be here, this is where we are and where we get the support we need to go on. Everyone's spouse is in a different place, and that is great support--most of us can both offer and receive help coping both emotionally and in more concrete ways. Welcome!

toolbeltexpert

Teresa I am so sorry your Carrying the whole burden that this disease brings on the caregiver. I understand your tears, I have loose more than once when I least expected it. I also can understand your dreading going home to whatever may be happening. Behaviors may be worse later in the afternoon, it's called sundowning and many caregivers dread that part of the day.

You sound like you need to talk maybe counseling would be of help. For me this forum was my life saver.I vented many a time here to very a understanding forum family. Making time for you is something that caregivers need to do. Others will chime in with lots of ideas, your not alone in this.

Jeanne C.

Teresa, I remember feeling just like you do not all that long ago. You're going to get great advice from this forum. The people here are amazing and have been a lifeline for me.

There are a lot of logistical items to handle. Everyone will suggest seeing an elder law attorney (CELA). Do it. The sooner the better. They are experts in getting your estate, POA, and even longterm care in order. I cannot express the relief of getting that handled.

The medical stuff can be overwhelming. Learn what you can (knowledge is power). It helps if you have a doctor for your husband who sees a lot of dementia patients or even specializes in memory care.

Another friend on the forum and I were talking about this yesterday. One thing that can help you get through this is compartmentalizing. Scream, cry, be angry. Then you can focus on one thing at a time. Small chunks makes it a little more manageable.

And, it's more than ok to seek help. Talk to your doctor. Get a therapist. Confide in someone you trust. Vent here.

We're here for you.

M1

Welcome teresa. Those last few years before Medicare can be so difficult, three years for you must loom large. When you talk with an Attorney or financial planner, i wonder if it would make sense to discuss the insurance as part of the equation. You are obviously not working from home, and I take it he is still okay to be left alone? You need to have a plan B for what you might do when that changes. Research day care programs in your area, for instance. But remember also to factor in FMLA time and Cobra costs for your insurance if you leave your job-but you would also be eligible for insurance through healthcare.gov (Affordable Care Act). I'm rambling a bit, but these would all be things to think about/discuss. I wish you well.

Ed1937

Teresa, everything you are feeling is typical. This is life changing, but if you stay with the forum, people here will make it a little less challenging.

Here is a good link for you to get started. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun  

SDianeL

teresa123 : So sorry you are going through this. Dementia/ALZ is terrifying & heartbreaking. You are in the shock stage. Ditto on the Elder Care Attorney and DPOA. My husband was diagnosed 2 yrs ago. My brother-in-law recommended the DPOA right away and I am so glad I did. Within a few months I had to sell a vehicle, rent an apartment & buy a new car and he could no longer read & understand documents or sign his name. This is not meant to scare you. Each person progresses differently and the doctors won't be able to tell you. So take him to the attorney and get the DPOA done now. Also get the book "The 36 Hour Day" that helped me so much. That's all for now. We all understand how you feel and are here for you. There is an ALZ hotline number on this site that you can call for help.

Howaboutnow

Agree with others. Please, while it is early, get all the legal/financial stuff in order ASAP. You will sleep somewhat better knowing things you can control are indeed under control.

Unfortunately, I understand not wanting to go home. Work is an escape. Keep it as long as you can. When you have to hire someone to stay home with your DH while you work, even if it costs more than you make, I’d say the health insurance and mental reprieve is worth it.

Welcome to the gang. We all care about you. 😊 🙏

jfkoc

Another hello.....we are here for you!

cavenson

Teresa, When a couple gets the diagnosis of dementia, it's not unusual to through the 5 stages of grief: denial, anger, bargaining, depression, and acceptance. Try to stay in the moment and think about what you can do rather than what you can't do. For each person, the progression of dementia is an individual journey, but it is usually a gradual one. In addition to all the good advice from members of this forum--particularly in regard to being prepared, there are things that you and your spouse can do together that may help you and him. You can make lifestyle changes like increasing physical exercise, eating a Mediterranean diet, researching and adding some recommended OTC minerals and vitamins, maintaining social engagement, and seeking out mental stimulation. My DH was diagnosed with MCI almost 6 years ago, and he is still in ES, and many days seem almost normal. However, we've gradually made some adjustments. For example, as a memory booster, I have a large dry erase calendar next to the breakfast table that has all scheduled activities on it. Hopefully, you will soon get to the stage where you accept the diagnosis and learn as much as you can about dementia. But don't let it control your life. I wish you well on this journey.

annie51

Teresa, we all understand the fear, the anger, all of it. This forum has been so valuable for validating my feelings and getting wonderful advice from those who REALLY understand what we're going through. Someone who has not been through this with a close loved one cannot imagine the day to day, minute to minute challenges, but at the same time, none of us can imagine what it's like to be the PWD. I have to keep telling myself that when I begin to get irritated or angry at DH. Take it one day at a time and remember to find and embrace the moments of joy each day.

H.V.

Since you say "DH diagnosis of dementia possibly Alzheimer’s" it might be very helpful to have a Neuropsych Evaluation done, to know what form of dementia you're dealing with. Knowledge is power, and it's true that "All Alzheimer's is dementia, but not all dementia is Alzheimer's." He's probably had an MRI done, but if a Volumetric Study wasn't done at that time, you might want to ask if that can be done now, from the MRI you already have. And if they won't do the Study now, make a note to ask for it, when and if a new MRI is done in the future. (We're in the midst of all this right now.)

Rocky2

Teresa, I'm glad you joined the group, but sorry for the circumstances that bring you here. I too want to validate your feelings. You are in good company here. We truly can relate.

I find that understanding more about the disease from the viewpoint of the PWD, caregiver and medical professionals to be helpful. When you are ready, I recommend watching YouTube videos by both Teepa Snow and Dr. Tam Cummings. They explain a lot in an easy to understand approach.

Please post as often as you can and read the posts from other members. There is much wisdom and true empathy to be found here. Again, welcome to the family.

Tom

Leesee

Teresa: I'm 62 & DH is 68. It seems you and I are at the same stage in life. My DH is retired and I planned to work 3 more years, then it would be my turn to retire and we'd travel and live life to the fullest.

We've spent the entire spring/summer going through testing: EEG, MRI, Speech Evaluation, Neuro Psych evaluation and Neuro-Ophthalmology evaluation.

We see the Neurologist on Sept. 7th for the final diagnosis (type of Dementia). His symptom's lead me to believe he has Alzheimer's and I've been scouring this website for helpful information.

My grief in losing the life we planned is overwhelming and compounded with concerns over money and caregiving.

Work has become my solace, but it's interrupted by worry over leaving him home alone. I downloaded a tracking app (Life360) on his phone so I know when he leaves the house. I also set up the 'do not disturb' function so his phone only allows calls from his contact list (he's been scammed for $2,000).

I've already taken great advice from this group and found an Elder Law attorney. I may meet with the attorney privately before taking my husband.

I may not be as helpful as others who are further along on this journey, but I'll walk with you and will share any information I find helpful and you can do the same. Or we can just vent!

No one in my life has a spouse with dementia. They understand from the perspective of the child or grandchild of someone with dementia. I've also cared for a parent with dementia, it was emotional, heart breaking and exhausting. This is life-changing and tragic!