For the very first time, I told people spouse had dementia!

Palmetto Peg

We recently took a 10-day Carribbean cruise.  Part of me knew it might be one of our last trips, but I think I had deluded myself as to how far along my husband is.  It was a big ship with over 3000 passengers, and my DH stayed pretty close to me - until  he didn't!  We were eating dinner in the buffet  one night (skipping the annoying formal dinner) and my DH announced he wanted ice cream for dessert.  The ice cream was outside of the buffet - but literally only barely outside the door.  I let him go alone, and he didn't return until I started to panic.  I finally got up and went to the ice cream vendor, and didn't find him.  I told him my DH had dementia, and he remembered that he had been there, but couldn't remember anything after that.  He had gone AWAY from the buffet, and I found him wandering down the corridor far away from where we were, completely lost and disoriented.  Then, the next day when we were about to disembark, he insisted on taking the steps to our cabin from breakfast instead of the elevator, and he wasn't there when I got to the room.  I told our cabin steward that I couldn't find my spouse with dementia, and he helped me locate him.

When we got home, my DH insisted that he would go buy milk at the store.  Much later I tried to find him, only to realize that he didn't have his wallet and had my phone, because his was dead.  I called him from our home phone, asked where he was, went there, and he wasn't there.  I went to customer service, almost in tears, and asked to use the their phone and told them I had lost my spouse with dementia - only to find out he was in a store miles away from home.  I drove frantically to that store, only to find him looking terrified and lost - in the wrong store!

What a sad day to finally say it out loud!  I know this is only the beginning, but the acknowledgement is one of the hardest things I have had to do so far.  

M1

Peg, I am so sorry it came to this...but you did the right thing to admit you (and he) needed help.  Rude awakening for you I'm sure.  I'm glad there were no worse consequences than there were.  But:  it sounds like he should no longer be driving or trying to run errands alone.  This crisis can be an opportunity for you to rethink how you are handling things.  Not easy, I know.

But I am glad you got to have your trip.  I hope the memories of it will help sustain you through what's ahead.  

Ed1937

Peg, I'm sorry. It sounds like he should never be by himself again. It's just too dangerous. And you now have no choice but to take the keys. If he were to injure someone, or worse, you could lose everything you have. It just isn't worth it. There are several youtube videos on the subject, and if you go to the top of the page to click on "solutions", you should find some help there as well. I know this is one of the hardest parts of this disease, and I wish you luck.

Palmetto Peg

I definitely agree about his driving.  He has a doctor's appointment April 3, and I will contact her in advance so she can tell him!  I do 99% of the driving anyway, so it shouldn't be a big change for him.  One more step down the slippery slope!

mommyandme (m&m)

I’m really glad you got to go on that cruise and hopefully enjoyed most of it.  The things you learned about your husband there…and yourself…are valuable too.  Sorry for the hard stuff always.

Demi

Things moving quickly for my husband who was diagnosed just prior to Christmas.

He has out all the old legal documents from a 7 year legal case we walked into when we bought our last house.  Moved here 3 years ago to start anew.  Now he wants to sue various of the people involved in old case - our house covered in legal documents. I have to participate or he gets enraged.  I am on a board that meets on Zoom - tonight I could hear him in the kitchen - taking a half cooked pie out of the oven and trying to eat it.  I had to leave the meeting (and probably the board).  Also tonight he was reflecting on times he cheated on me when we were married (oh lord) so he has a clear conscience.   I am having a very hard time tonight.

I have been a kindergarten teacher I think of myself and mostly kind and mostly patient but I know I am going to be so tested by this situation.

I know too that this is horrible for him and mostly I am thinking about that.

harshedbuzz

Palmetto Peg wrote:

I definitely agree about his driving.  He has a doctor's appointment April 3, and I will contact her in advance so she can tell him!  I do 99% of the driving anyway, so it shouldn't be a big change for him.  One more step down the slippery slope!

I hope your doctor steps up on the driving; our did and for that I am grateful as it allowed us to be dad's ally in the lost rather that the bad guy in the scenario. That said, many physicians leave this to family so don't count on it.

Please stop even the 1% of driving done. Have you confirmed with your insurance carrier that your DH would be covered in the event of an accident? Our policy does not cover someone with a dementia diagnosis. Under such circumstances, you could be sued and lose eveything you'll need for his future care to say nothing of the guilt with which you will have to live going forward if he harms or kills someone.

FWIW, my mom had an accident a couple of years ago. She doesn't have dementia and despite some eye issues her doctors cleared her to drive. I asked. She caused an accident and was sued. In the time it took to resolve the case-- from deposition to an eventual out-of-court settlement-- was about 18 months. If she'd had dementia, as my dad did, her disease would have progressed in that time, and she would have looked very different on the stand than she did the day she caused the accident.

HB

Palmetto Peg

Thank you all for your wise words about him driving.  I have decided that between now and his doctor's appointment, I will just "lose" his keys and whenever he wants to go somewhere, I will declare that I want to go, too, and will drive him.  After the doctor sees him we will have to have the painful discussion.  I know our doctor will cooperate with this - she is a very kind and very knowledgeable physician who seems to understand dementia well.  I saw her yesterday and spoke to her about it, and she agreed he shouldn't drive and that she will reinforce that for him.  Little by little this disease takes over...........

Ed1937

Peg, even if the doc tells him he shouldn't drive, be aware that he might still insist on driving at times. You'll need to be ready for that.

Gig Harbor

Hi Peg,

My husband followed the same path. He was driving one day on a very familiar stretch of road and he had no idea of where he was. That was the last day he drove. I explained that he just couldn’t drive anymore because if he got into an accident insurance wouldn’t cover him and we could lose everything. I stressed the things he could still do but held fast to no more driving for him. About a year later he started getting lost on his daily walk (same one he took every day for 10 years). After the second time in three days it was the last time he went out alone. I hired two ladies to cover three days of walking/ keeping him company and I walked the other days. Some days he would fight me about it. I finally said that if he went out alone and the police had to bring him home they would make me place him in a home. It sounds cruel but it worked. A year later when I did have to place him he never remembered those conversations or even his “ladies”. It is a horrible disease. He has been in a memory care for 10 months and only shuffles with assistance, can’t feed himself, rarely talks and sleeps most of the time. Good luck with your husband and stay strong when you know you are right. I kept reinforcing the things my husband could still do to make him feel better. Possibly start looking at bringing a companion in to keep him company when you need to get out by yourself.

Lhuerta

Peg, I am so sorry.  It's really scary when you don't know where he is and realize he could be in serious trouble.

As far as telling people, I printed up some business cards that I carry with me that say, "Mike has Alzheimer's.  Your patience & kindness is appreciated.  Thank you."  (copied from an ALZ site)

I give them to people when we're out and about and Mike's behaviour is not what people expect.  It was extremely helpful when we were flying and he couldn't follow the TSA agent's instructions.  People are very understanding and it gives me some peace of mind.

Hope that helps.

Denise1847

Peg,

I took my husband on a cruise in December 2022 to celebrate our 50th wedding anniversary.  I knew it would be our last.  I put an apple luggage tracker in his wallet just in case I should lose him.  Thank God, I did not.  However, I know the feeling as I really had to stay glued to him to ensure that we didn't get separated.

The process of accepting and acknowledging the devastation of the disease is extremely difficult.  I have informed all of our friends, neighbors and family so that they are more understanding and supportive.  

RCT

I am so happy that you got one big last trip in….absolutely his driving days are over..not only to keep him safe but others too. My husband was  very willing to stop driving when the doctor told him no….I know that is not always the case. My husband did get lost a few times locally and he knew it was the right thing to do.  It is challenging to be the chauffeur at this point but necessary….when we are in a store I always have an eye on him….living this way is a huge adjustment….you have great support and help here!