I feel lost: We don’t have a diagnosis yet

Dear Anotherday:

Breathe my virtual friend! Many days, that’s where I have to start when feeling stressed. I breathe in for a count of six, hold for two and breathe out for 8. I do that as soon as I can to start my morning, at the end of the day, and then throughout the day as needed.
It's completely natural to feel uncertain and frustrated when dealing with undiagnosed dementia. Here are a few suggestions to consider while waiting for an official diagnosis:

1. Keep Communicating: Maintain open and honest communication with your spouse about your concerns and observations. This can help foster a supportive environment and reduce any confusion or frustration he may be experiencing.

2. Continue Lifestyle Efforts: Nice job at controlling what you can! Your focus on diet, supplements, exercise, and Vitamin D is important. These efforts can still contribute to overall well-being and might positively impact his cognitive health even without a formal diagnosis.

3. Document Changes: Keep a journal of your spouse's behaviors, symptoms, and any changes you notice. This information could be valuable when discussing his condition with a medical professional.

4. Seek Medical Advice: Consult a healthcare provider to discuss your spouse's symptoms and concerns. They can provide guidance on potential next steps, diagnostic tests, and strategies to manage his symptoms.

5. Support Groups: I am impressed you are already reaching out to a support group. Well done! We are here for you. Consider joining local support groups for caregivers dealing with undiagnosed dementia. Face to face connection with others who are facing similar challenges can provide valuable insights and emotional support.

6. Plan for the Future: Begin thinking about what steps you might need to take if a diagnosis of dementia is confirmed. This could involve legal and financial planning, as well as setting up a support network.

7. Self-Care: Taking care of yourself is crucial during this time. Make sure to prioritize your own well-being and seek assistance when needed.

Remember, you're doing your best in a challenging situation. Getting a diagnosis and managing dementia can be complex, but seeking professional advice, gathering information, and reaching out for support can make a significant difference.

Sending you a big virtual hug of support and compassion.

My best,
Kim

Hi @anotherday, I noticed something was wrong with my husband about two years before he was diagnosed with Alzheimer's. As @mrjohnwebb suggested, keep a record of his behaviors and give them to the doctor when he goes for an exam. I told my husband I wanted to do that and he was agreeable. The doctor said it was very helpful. My husband still functions well, even with breaking his hip a year ago.
He still does some chores around the house, he gave up driving and managing our finances. Also, sometimes I can get him to do a puzzle with me or play Scrabble. It has to be non-competitive and supportive. I try to function as his guide. Some times I lose patience, with him, but not often, as he's sweet. He's appreciative and not prone to angry outbursts. His memory is pretty bad, but he's still capable of remembering some things. I was giving him a number of vitamins, but notice he's much brighter since I've been giving him a highly potent multivitamin. I cut back on some of the others so he wouldn't be overdosing on the vitamins in the multi.
I put a white board on the fridge and he writes the day of the week every morning. Also, if something's coming up, like a dentist appointment, I write it down so he can get used to the idea. The dentist has had to make adjustments, shorter, more frequent visits and no cleaning with the water device.
When I'm out, I write down where I am and when I'll be back. He's gotten into the habit of consulting the whiteboard.
Teepa Snow has a lot of videos on YouTube for managing various behaviors in dementia and the Alzheimer's Association has a helpline that operates 24/7 - 1 -800- 272-3900. I haven't had to use it yet, but have heard that it's helpful.
I wish you the best, this is a long road for so many of us. Some of us have it easier than others, but we all want what's best for our loved ones and do all we can to make that happen.

@anotherday You ask what you should do until a diagnosis—just do what you are doing. You’ll drive yourself even crazier if you keep looking to the future and what might be. I love the suggestions you’ve gotten from @mrjohnwebb and @tsc. They are very helpful. Just take it a day at a time.
This is also a good time to talk with friends and family about what’s going on and how they can help. Build your support system. Look for resources in your area, maybe find caregiver aides (for future help).
I’m glad you have reached out to Mayo Clinic Connect and everyone will help as much as they are able.
Are you doing OK today?

Ive had tinnitis for years - now tv commercials say its a pre- cursor 2 dementia & im under a huge amount of stress right now & am experiencing more forgetfulness..... but now im worried the tinnitus is shrinking my brain cells 2. Is there any truth 2 the correlation between dementia & tinnitis???? Marcy lomprez

Marcy:
I'm not a doctor, but I can provide some general information but first I have a question. Are you also experiencing hearing loss? If so, consult an audiologist because there can be a connection between hearing loss and dementia.

While tinnitus and dementia are separate conditions, some studies suggest there might be a connection between them. However, having tinnitus doesn't necessarily mean you'll develop dementia. Stress can impact memory and cognitive function, so managing stress might help. If you're concerned, consulting a medical professional would be the best way to get accurate information and advice tailored to your situation.
My best,
Kim

Feeling lost is normal. Don't beat yourself up. Start learning as much as you can about dementia. The free online courses at https://training.alz.org/Caregiving is a good place to start. Also, the 800 number on that site will connect you with a trained counselor. Above all, be kind and compassionate with yourself -- and breathe. I was in the same place as you are until my wife was diagnosed. Then I started educating myself about the disease and how to care for someone with dementia. The more I learn, the stronger and more confident I get about my ability to take care of my wife and myself. You are not alone on this journey

Ok this is the 3rd reply - i keep loosing them but i want 2 thank u for making me feel like im not loosing my mind. Audiologist & optometrist appt r in the works!!!! Marcy.

I took care of my husband with Parkinson's dementia for 5 years before he died.It was extremely difficult. Then shortly afterwards I developed breast cancer. I had a lumpectomy, radiation and chemo. I was very sick. I'm still left with peripheral neuropathy from the chemo and I can't drive. I'm now almost 82.
Several days ago, I started feeling myself getting anxious while I was trying order something on Amazon. Everything was going wrong.
Then I happened to read that rubbing one's earlobes acts like accupucture and is calming. I tried it, It worked and I felt better. Maybe it will work for you. I wish I'd had known about it when I was taking care of my jusband who was so unhappy and raging around!

Kim Webb, Terri, Becky, tgeno - Your suggestions are solid. I noticed the changes beginning years ago and started researching, trying to figure out just what was going on. He's withdrawn from any social experience with the occasional phone conversation that he's willing to be a part of. We used to travel in the motorhome quite a bit, that came to a halt in 2014. We attempted a car trip in 2016 but when we reached our destination he refused to leave the hotel except for the event we went to attend and then to come home. With this said, this has been going on a long time.
I have noticed that certain supplements really do make a difference. Are we allowed to talk about those here? They may help someone else who's also in my situation. Diet is extremely important as to his behaviors and moods. Seafood for the omega 3's a couple times a week makes a noticeable difference. I've also noticed that what he watches on television or listens to via podcast or whatever I set up for him on the computer has an influence. I just went back up through your list and saw about the open communication with spouse...I've tried. He is in complete denial that there is anything wrong. I've had to quit leaving him here by himself, he gets wayyy out of sorts when I leave for any time. With that said, I have made it an unwritten, so to speak, rule that he has to go with me each Wednesday so that we can take care of whatever business and shopping needs to be done. He gave up driving on his own several years ago, but every now and then thinks he should be driving again. You're right - I need to be keeping a journal of his changes. I feel like the frog in the pot of water coming to a boil. I've been adjusting to these changes over time and have become used to them. I've reached out to family and friends, so far not a one has stepped forward to offer any help other than I can text them for a call when I sense that my husband is going violent again. They will call and talk to him long enough that it diffuses whatever situation and before they get off of the phone he's settled down or forgotten what he was so upset about. I guess that's something I should be really thankful for. I alerted our doctor when he began threatening to kill me. I've also made a believer out of my hubby that if he physically attacks me ever again he will leave here in handcuffs. I say made a believer because the last time he attacked me it was severe enough that it took months for me to heal. I moved out of our bedroom to the upstairs and have set up an almost apartment for myself complete with doors that lock. Sidenote on the door locks, our house shifts from season to season. They don't always latch. I found a lock that perfect for this situation and it can't be kicked in. At least not readily. I'll gladly share the lock name and where you can get it if anyone needs that information. It's been well over a year and he still wants me to come back to our bedroom. He's never attempted an apology, says he doesn't have anything to apologize for. As far as his functioning - that's somewhat difficult to gauge. Most days he gets up between 9:30 and 10:00, puts the bird feeders out, (we have bear) spends the day in front of the television until around 4:00 or 5:00 then wanders outside to water his little garden, pots of vegetables, and feed the deer. Otherwise, he's constantly calling out for my attention. Every few minutes, sometimes seconds, it's Hey (insert name here) , and wants me to see something or hear something he's seeing on television. If I'm in sight of him watching television and he loses interest in whatever show, he then takes it upon himself to shadow me, wants to tell me how to do every step of every project I may be trying to accomplish. Very annoying. Maybe one of you can explain the hyper talking thing. He gets to talking and just doesn't seem to be able to stop and gets furious if I even try to insert anything. I've put all of this in writing and handed it to our doctor. Our doctor and I have tried to convince hubby that he needs further testing, hubby absolutely refuses. Hubby is sure if he gets anywhere close to a hospital they will kill him. Yep, paranoia to the nth degree. Everyone, including me is out to get him and take all of his $$$. Hospitals became a done deal with him through the covid thing, he won't go anywhere close. So where we are now is that he will not allow himself to be diagnosed and I live in hell a lot of the time. Don't get me wrong, we do still have times where things are a little less stressful, but the absolute personality changes have been hard, to say the least, to handle. I've been all over everything I can access to do with brain changes, Alzheimer's, dementia, schizophrenia, etc. Our doctor is leaning towards dementia. I haven't been anywhere without him since last Winter, have had zero breaks, he refuses anyone coming in so that I can leave for a couple hours even to go get my hair done. Suggestions are welcome and thank all of you for your most valuable input. Wow, I think the dam just burst, I just reread what all I wrote and am sitting here bawling like a baby.

Another day:
Reading your post made me what to rush to your home and hug and cry with you and crawl down into that hole you are in and hold your hands while you weep.
Your husband may have lewy body dementia. That is what my husband has been diagnosed with. That can be more violent than other types of dementia. Do you have a neurologist for your husband? If not, can you talk to his primary care doctor about LBD?

Have you read the book “Contented Dementia”? If not, I’d recommend getting yourself a copy ASAP. “The 36-hour day” is also a classic and has so many important tips.
How are you today? Please keep reaching out. We can be here for you even when others aren’t able to join you in your journey.
My best,
Kim