I’m Sorry

wose

I want to apologize to all of you lovely people here on this site that gave me such good advice,but you absolutely scared the living crap out of me. Each time I would read the remarks I would sink deeper and deeper into uncertainty. I am slowly trying to “put my big girl pants on” and also I’m trying not to be the frog in the boiling water but it is hard as all of you know. Just when you think you’re somewhere, it’s two steps back again. The “driving” is not an issue as I threatened him with all I had. I know not good, but sometimes, you know. Doesn’t even ask anymore. Oh by the way, the Nurse called and told him personally he passed his driving evaluation. I couldn’t reached thru the phone😪I’m sorry I behaved like an infant and deleted everything. I have no one but you and I deeply appreciate this site. It’s like a life line, reading all of your caring messages to each other. My DH MRI results came over on my phone as generalized cerebral volume loss, B12 extremely low. 4 more weeks to see Dr. I can’t for the life of me settle on a stage, one second he’s normal as can be and then jumps to maybe a 4. I’ve read so much material, but it’s impossible for me to figure out. He is definitely grand standing, I see it clearly now. Should I plan that trip to the Grand Canyon, like now? Too bad we as caregivers don’t have defined stages or do we? I still seem to be everywhere all at once, except denial. It’s hard to deny and even harder to accept. Thank You💕 How am I supposed to repay everyone here, I don’t have any advice.

Jeanne C.

I'm sorry we scared you. I get it. It's a lot to learn while you're already managing things at home.

I'll give you one small piece of advice that I hope will help. Compartmentalize. Pick one thing and handle it. Then move onto the next. It's like that old joke: how do you eat an elephant? One bite at a time. Hugs to you.

ButterflyWings

Wose - Glad you are back, and that you are OK. No apologies needed. This is scary stuff. But despite the early shock and awe, I too was happy to find this community of people who weren't guessing at what to tell me, nor minimizing or invalidating my experiences.

The things I learned here early on, did not scare me as much as being blindsided or totally ignorant of what was happening with my DH and what it would mean both short term and long term for both of us without the helpful guidance from this community. The honest sharing of "here is what various forum members have experienced, and how they survived it" was so welcome, especially since our fellow caregivers here were also careful to say that every PWD is unique so I might not experience any of this. But being warned of the possible pitfalls was priceless.

And, honestly, the cautions lit a fire under me to address some things that definitely were literally accidents waiting to happen. I am eternally grateful for the knowledgeable wake-up calls and the hand-holding through the scariest times -- which come and go. We are back immersed in scary times as we speak, after years of treading water in Stage 6, due to recent downturn and new (terrifying) territory of Stage 7.

Just remember that when you get to the end of your rope, tie a knot and hang on. Grand Canyon? I say plan, be flexible, and go for it. We followed the advice to travel and tried to do as much together as possible on our wish list before things deteriorated too far.

Iris L.

I would push the doctor to get that vitamin B12 level to therapeutic level. Low vitamin B12 is a dementia mimic. But that does not explain the cerebral volume loss. He will need vitamin B12 injections, possibly sublingual (under the tongue) but not oral administration because his body is not absorbing B12 via the stomach.

Iris

M1

Glad to hear from you wose and absolutely no apologies needed. Agree completely with Iris that the vitamin B12 needs to be addressed, call his primary care on that one. Standard of care is injections (once weekly until levels are normal then once monthly). Oral replacement will not be absorbed.....

Mint

Wose I’m so glad you are ok. I knew you were overwhelmed and i understand. So glad you are ok.

Joe C.

Wose, No need to apologize! We all understand how difficult it is navigating this journey that none of us want to be on. Your priority at the moment should be taking care of DH’s medical evaluations and seeing a CELA to get your legal/financial house in order. Then if you want to go to the Grand Canyon do it while you can, but go ahead and start planning as time allows as it might be a good distraction.

M1

Just fyi wose, my partner and I took a 25th anniversary trip to the North Rim in 2019 when she was stage 3-4. I did all of the driving. We had a wonderful time and I am so glad we did it. Hope you can make it too.

mrahope

Glad to see you are back. No apologies needed. It's sometimes scary to hear folks talking about things that you have yet to experience. And sometimes things occur in an order that is individual in nature, and often things are skipped in a given person. As folks have said here, "If you've met one person with dementia, you've met one person with dementia."

I have huge respect for all who share their knowledge here. Particularly those who recommended taking care of legal and financial matters sooner rather than later. I'm now needing to use the powers of attorney we created back in 2021.

Hang in there, find the time to do the things you enjoy together while you can. You are making memories for yourself to hold on to. Take care.

Ed1937

Wose, I don't think I responded to your previous thread because I took a break from the site for a while. But rest assured that the members here understand how hard it was to take in everything that you were seeing on the site. As has been said "No apologies needed". We "get it".

I agree that you should get his B12 needs taken care of ASAP, and also see a CELA if you haven't done that yet. Please don't wait for that because if you do, you will surely be sorry. All legal matters need to be addressed before progression gets in the way. Even though it may seem expensive, it's something you do not want to avoid taking care of.

Quilting brings calm

Wose- welcome back. No apologies needed. We are an honest bunch here and it’s scary to hear that there is no magic fix. In his case, however, there’s help available. B12 deficiency mimics dementia amd certainly can make pre-existing dementia appear worse. My step-dad has B12 deficiency and gets the monthly shots. We found out he has it when he woke up from a nap and out of nowhere accused my mom of having an affair. It will take a few months of shots to see the benefit and the shots will continue forever.

Regarding your repaying but no advice comment: advice isn’t the only thing needed here. Every one of us have days where we have no advice, and just need a word of support. You’ve joined team support here and you are needed here just like everyone else.

ghphotog

We are all glad you are ok and possibly we / I should be a bit more tactful sometimes.

I was going to mention having his B12 looked at seriously but that has already been mentioned several times. Our insurance wouldn't let us have and MRI until the B12 was checked. It can have a significant effect on dementia and that is somethiing that can actually be treated.

jfkoc

It is more than fine to get upset here but we are going to worry when we do not hear from you. We like to keep tabs on our "club" members.

Stages? They are really very little help so please do not try to place where your husband is. Concentrate on where he is and live withing the 4 corners of his world. We will, of course, jump in and share what we know about what is going on.

Do try to get that B12 upped asap. It is one of the first things checked when there are dementia symptoms. Take a moment to google the diagnosis process. B12 level is usually part of the lab work done before before undergoing a MRI.

Mimi50

wose, I get feeling scared my husband is still driving too. The more I was reading the more I thought. That I should be doing more. He has appointment tomorrow with the doctor. So I will let you all know how it goes. Just take things one day at time.

Mimi50

https://alzconnected.org/discussion/comment/193956#Comment_193956

My DH like wose DH is still driving. Glad you guys scared me. But I needed it. Now things will change.

BPS

My wife had 2 accidents close together a couple of years ago. They were small and no one got hurt but it scared her and she gave up driving on her own. I thought she was still able to drive but I didn't realize how her depth perception was off and that was the cause of her accidents. So even when she appeared to be able to drive safely she was a real hazard.

midge333

Welcome back Wose! Good thoughts for you and your DH.

JeriLynn66

Wose, glad you came back. Hang in there.

Ed1937

@Mimi50 since you have a doctor appointment soon, I suggest you write a note for him to read before seeing your DH. You could give it to the person at the sign in desk, and ask that the doc read it prior to seeing DH. You can put anything in the note that you would rather not say in front of DH. It sounds as though you feel he should not be driving, so that would be one thing to put in the note, asking the doctor to tell him "no driving". Anytime you can let a doctor or someone else take the blame for some unsettling news, the better it will be for you.

Denise1847

Welcome Back,

We are glad you have returned. Take your trip and enjoy but be flexible. One day you will be giving others advice. It is a difficult journey but you are going to make it through one day at a time. Keep posting and reading.

Bluebird

Welcome back. Like you my husband can seem totally normal for several days in a row and I’l doubt the diagnosis, then he’ll have days where he’s more like stage 4.

When it comes to seeing an CELA, every state has different laws regarding protecting your money and how money and accounts need to be set-up, if in the future your spouse needs nursing home care. This is especially important when you are the spouse. Also things like setting up power of attorney for medical and financial needs to be done now while your husband is still considered to have capacity and can legally sign the papers. CELA specialize in all the above for your state. Don’t go to a regular attorney for this, you need to see a CELA.

As for traveling, travel as much as you want and have fun. If you’re not sure how your spouse will do, take a shorter trip 3-4 days and see how he does. Then take a longer trip.

Nowhere

Wose,

We totally understand. It’s insanity and none of us can deal with it, but we manage it the best we can until we can’t. And then these boards pick us up, dust us off, by providing advice, understanding, and support. My husband’s going on 17 years of what doctors have diagnosed as Alzheimer’s. I’ve joined this site three times during this span and quit twice. I, too, deleted posts that I wrote and found infuriating, but it’s the disease not you, me, or the members here. May grace find you when you need it.

wose

That was so nice of you. Thank You. It warms my heart so much to know there are so many good people out there💙

SSHarkey

Worse, I agree with everyone here! You’re not alone! At first, I became overwhelmed. Still do at times! We’re here for each other!

????

We all are scared. There is not much we can do about this journey we all are on. Go to the Grand Canyon while you can. We found out 2.5 years ago that my wife has Alzheimer's. We decided to travel while we can, go to places that she always wanted to see. We have traveled quite a bit, had to slow down last summer when she had some issues. Puerto Vallarta is her happy place, We are headed there again in a couple of weeks, the second time in the last few months. Traveling with her is hard, but so far we have managed. It will come to the point when we will not be able to travel anymore, but I will be glad that we traveled while we could

Mimi50

https://alzconnected.org/discussion/comment/193957#Comment_193957

I have been away for awhile so very sorry about your DH entering stage 7. The reason I was away was not because of my DH dementia. I put off having my desperately needed dental work. Since he was diagnosed and now I am getting it taken care of. I have three teeth with abcess and few more pulled. Probably either partial denture or top and bottom full set. As caregivers we put our health needs on hold. Along with dealing with the stress of care giving. Hopefully I will be little more active on here soon.

Mimi50

https://alzconnected.org/discussion/comment/193967#Comment_193967

I didn't know that my husband needed to have his B12 levels checked. I will mention it when he goes back to the doctor. Thank you for the information.

Emily 123

Goodness, wose, nothing to apologize for here!

I don't think it would be unreasonable to plan a trip but just have the expectation that removing him from his routine and his usual visual cues may cause him to need a lot of cueing on your part. Honestly, with as easy as airtags are to attach to things it might not hurt to use one if you're going to be traveling where you might get separated. (I had a tracker in my Mom's coat pocket because she was slippery as an eel about sliding out of the house for her daily walk while I was on work calls. As mad as it made her, It took one time of being able to find her three blocks away to remove any qualms about the ethics of it.) You could always buy travel insurance too, to cover anything that needed cancelling at the last minute. Maybe you can do a few overnight roadtrips as the time for your trip approaches to figure out what you need to take and what works best? I know there are quite a few threads on here about what's worked well for people--just search using the magnifying glass at the top right of the page.

Mimi50

https://alzconnected.org/discussion/comment/194037#Comment_194037

Thank you very much ! will follow your advice. Putting it in note and he might not be the only not driving. I had eye doctors appointment about month ago. They want me to see specialist because I might have glaucoma. So I will need medical release from my eye doctor. If I have glaucoma to drive and there will be restrictions. I live in Illinois so it is unlikely that I will be able to drive at night. Once my abcess teeth are removed the eye specialist is next. Only my DH knows I haven't told our DS he is 26. Haven't told my elderly parents either they all have so much too worry about. My son obviously his dad was diagnosed year ago with VD. My parents have my younger brother he is 48 and has heart failure and will need heart transplant. If there is something wrong with me. It is just more stress and worry for them and I don't want that for them. Eventually losing my eye sight is something I can accept and deal with. What it does too the people I love that I can't deal with. I apologize for unloading my health issues on you. Obviously you have enough too deal with.