Rob's Dementia Journey with FTD

After disappearing for 5 hours one week - a week later, he did tell me he was going for a walk, but again was gone for hours, he wanted to ride the bus with his friend Tim, but got off at the wrong stop. I am not sure how long he was "lost", but he eventually found his friend and rode the bus with him.

We had a ton of logs and kindling piled up over the years that Rob had cut up, from fallen branches and dead trees. I decided to offer it for free on a FB Free Stuff site and told Rob that my son and I had moved the logs and kindling out to the driveaway to make it easier for people to pick up. It took 4 people with cars, and another with a pickup truck to haul it all away! Rob was convinced someone was going to walk up our driveway with a match and set it all on fire.

  You asked me to let you know what you need to watch for with Rob. I really do not like to talk about him, when he is listening. He gets upset, and then I have to deal with his anger. I prefer to keep him happy as much as possible, That can be a full-time job in itself. Since he will be in a familiar place, he will probably be just fine. Changes in his routine can get him agitated, but most of the time he is pretty good. Most of the time he is quite jolly, can be the "life of the party", which is not who he used to be! LOL If he does get agitated, he might simply refuse to talk to anyone. I have learned to ignore him when he gets like that, and he usually gets over it. Other times, he has suddenly stormed out of the house and taken off. Fortunately I have a Life360 app on my phone, that I can track him, and know where he is. I usually just let him come home when he is ready. Sometimes, if he gets frustrated about being unable to figure out how to do something he used to be a...

He has been confusing days lately, saying it's Monday when it's Friday, and saying that he just went to the memory clinic yesterday, when it was days ago. While taking a MOCA test for an Alzheimer's Music Study, Rob was asked what month it was. First, he said May, then he corrected himself, and said June (which it was). But then he corrected himself again and said confidently - no, it is July. He scratched up his glasses while working in the garden, but I told him he had coverage in his work benefits to get a new pair of glasses. But he insisted that no one knows how much coverage he has except Sunlife Insurance, and they aren't telling. I told him it was in his benefit's book, and on their website, we could just look it up, but he got really agitated so I gave up. We finally sold his car. When the people came to look at it, he was removing his license plate, and it wasn't coming off easily. He completely ignored them, and their questions and offers to hel...

We went grocery shopping yesterday, and first we went to Shoppers Drug Mart to buy pop on sale. We picked up a few more items on sale. We had brought in a cloth shopping bag, so he put our purchases in there. Then we went to the Superstore for the rest of our groceries, and he carried in the plastic bins we use when grocery shopping, and put them into the shopping cart. When I went to put something into the bin while we shopped, I realized he had moved some of the Shopper's purchases (bacon, hotdogs, eggs) into the bins, and brought them in with us! No idea why?? So I am feeling a bit panicky, thinking how will I get them out of the store without having to pay for them again!? I tried to explain the problem to him, so he grabs them and starts heading for the door, saying he will take them back to the car. No! You can't just walk out with them! Visions of him being arrested for shoplifting! So he gives them back to me and takes off to look for the receipt in the car. Back...

  I think Rob was having a bad week when he was acting out. He is back to his old self now, no more outbursts. When we talked to the cognitive neurologist, she told us to watch out for ALS symptoms. So that is why I was reporting his muscle cramping, slurring words, and difficulty with saliva and swallowing. The saliva symptoms have progressed. He has been slurring his words more frequently lately and started slurping back his saliva often. We had fried chicken the other night for dinner, and I looked up to discover water was pouring off of Rob's chicken.  My son noticed that Rob's hands were wet.  I was so confused, wondering where this water was coming from?? Turns out it was saliva, there were two streams of it coming off the chicken at his mouth, his hands were soaked, and he didn't see anything wrong with that.  He was confused when I asked him about it, as if he didn't know what I was talking about.  I feel like this is suddenly happeni...

Tip #4: Keep a “To Go” kit ready and easy to grab Your To Go kit should include two main groups of things. Photo courtesy of Pexels. One group will include paperwork, such as: Advance health-care directives such as a Living Will and copies of the medical order forms Common medical orders forms such as the DNR (Do-Not-Resuscitate) and POLST (Physician Orders for Life Sustaining Treatment) A medication list A copy of your medical power of attorney form It’s never a bad idea to have a copy of their ID card and insurance card as well The other main group of things to put inside of your To Go bag are items that will make the ER visit less boring for you and for your person — things that might make you both more comfortable. For you, items like a phone charger, book, snacks and water — maybe a small travel blanket or neck pillow. Also pack a pen or pencil and pad of paper to take notes and document important things. For your person, take something that makes them comfortable or reminds t...

A funny, not funny moment. When we came back from the meeting on Wednesday, Rob asked me why his pants were so tight? I said, let me check the size - he was wearing my son's jeans! My son wears size 29, when Rob was working, he wore size 34. I knew he had lost weight, but it's scary to think that he could even put on these jeans, but even do them up, and they were not all that tight on him, just snugger than he was used to.

I've given Rob an assignment. I hope that he can manage this before it's too late. Lately he has gone back to practicing his guitar, taking it with him when he goes to his day program. So, he was listening to the chords on a video of the song we danced to the first day we met. ( Keeper of the Stars ) and I realized what a wonderful memory it would be if I had a video of him playing that song. So, I told him if he would practice our song, when he feels confident, I will videotape him playing, as a keepsake. Then I had another thought. His family is very musical, his sister plays in public at many professional settings. So I was thinking, if I could play this video at his funeral, and his sister could play along, their last time together. Sorry, kind of morbid, but we all know it's coming. Of course, I will be a ball of tears, already listening to this song makes me tear up.

  I've been up all night in pain and throwing up, and he took my basin away when I finally fell asleep on the couch! I was cleaning the basin out each time so that's not his excuse. So, I woke up so nauseous, discovered it was gone and called out to him. He was just in the next room, but no response. My throat is sore and raspy, but I keep calling. Finally, after about the 10th time, he answers me, and I ask him to bring back my basin. No idea what I am talking about. Argh, I am so nauseous, my throat is so sore, but I try to explain what I need. I pat the couch next to me, explaining the basin I had right here, that you took away. Blank look... Oh, he says finally, you want a cloth. No, the basin! Before I throw up all over the couch! It's hard enough being sick and having to take care of yourself, and the dogs. He is supposed to only be in early stages

  We were at the dr for tests today. Just testing his heart to make sure he is ok to take the meds Rob was talking suicide on Sunday, so I contacted the memory clinic, they got him in right away and talked him into taking some meds. I was surprised they could get him in so quickly. I was also surprised that he admitted to the dr how low he was feeling. The dr was so firm with him. He told Rob this med may make the difference between being able to stay at home until his death, or spending most of the rest of his life in LTC facility. Normally Rob won't take any meds, but he has agreed. We have gotten so much support from the memory clinic and the Alz. Society, but I still feel so lost and overwhelmed

  Rob got up early this morning, about 6 am, when he usually sleeps till 11 am. I thought he was on the computer. But when I came down hours later with the dogs, he was simply sitting on the couch, in the dark, contemplating if anyone would miss him if he was gone. I told him about all the people who love him, who would miss him, and that it would break my heart. That I would be alone for the rest of my life. I reminded him of how much he helps me, that he can still do all the heavy lifting, and getting down on his knees to do the things I cannot. I know he is feeling so lost and useless without his job, no longer seeing his friends every day. His family was all here before Christmas, and we went out to dinner. His best friend was here before Christmas. But he feels abandoned and lonely, though he will not go out to visit anyone. He has done so well up to this point, but now I am worried. I decided not to beat around the bush, and told him that if he committed suicide, I would not...

When my husband was diagnosed with FTD, the dr offered meds for memory and for behavioral. My husband declined, and I agreed. We rarely take meds for anything. The memory clinic recently asked for a 6 month update, and I sent them a list of how he has been acting. Most of the time he is fine, cooperative, and reasonable. But he has moments, like yesterday, I didn't turn the corner quick enough for him while driving, so he yelled at me and then refused to talk to me for the rest of the day or do anything for himself. Another time I wouldn't change lanes when he wanted me to, so he didn't speak to me for the rest of the day, and took off as soon as we got home. Fortunately he only went to McDonalds, and I could track him with the Life360 on my phone. Or the time I wanted out of the store when it was packed with Christmas shoppers on a Sunday, figuring I could come back during the week when it was less crowded, he didn't speak to me for 2 days, refused to eat and went to ...

  Apparently "somebody" went into my husband's phone and deleted "all" of his contacts. He is absolutely furious! He is convinced someone stole his phone and deleted all his contacts. I looked thru his phone and only one contact is missing, but he is ranting about how he now has to find and add all of his contacts back. I got him to look up the missing contact (the local tire store) on Google and add it back. A simple thing...

  Funny how it seemed he was doing pretty good till I had to write an update for the memory clinic. I got an email from the memory clinic the other day, and they said it had been 6 months since his diagnosis, and to send an update on how he is doing. I started out... "I think we are doing well, considering. He has started going to the Adult Day program at the Alzheimer's Society once a week. He is able to take care of himself, dressing, bathing, cooking simple meals, etc." Then I started writing out some of the moments... when he was difficult... when he was confused... when he struggled... When it all adds up like that, while yes, we are coping OK, I can see that he is progressing. I was thinking he was maybe stage 3, but after writing all that out, I think he may be in stage 4 or 5. I think we are doing well, considering. He has started going to the Adult Day program at the Alzheimer's Society once a week. He seems to be enjoying it. However, in the week prior to s...

 Rob has mentioned that he is having trouble sleeping.  I haven't noticed this, he seems to be asleep whenever I wake up in the night, and I wake up often.  And he goes to bed about 11-11:30 PM, and he sleeps till about 10-10:30 AM. But he says he often lies awake at night, staring at the ceiling. So last night we started him on Melatonin, 5mg, to see if that helps.

He is angry with me. I am sick today, slept till noon after being awake all night, and feeling wretched. But he needed to go shopping, so I took him. He wanted to go to the Canadian Tire store for new wipers for my truck, as well as groceries.    So I pulled into Canadian Tire first, and he asked why. I said, "I thought you wanted to go here first?" OK whatever, he doesn't care, he says. But I walk in, and the store is packed with Christmas shoppers and the checkout lines are crazy! I feel like I am going to pass out, so I head for the exit, I can't deal with this! He says we don't have to go thru those lines, so I turn back, willing to try his way. But now he is furious and goes storming out! Ok, on to the grocery store. So, he is grumping all through the grocery store, keeping out of my line of vision, so I have to keep turning and look for him. It wore me out even more, and it was a relief to get out of the store. But as soon as we got home, he walked out, sayi...

I should have known that something was wrong years ago, when I told him I had skin cancer, and he said nothing. I had to make him hold me. When I fell down the stairs and broke my leg in 3 places years ago, he didn't come to the hospital because "I was dead anyhow". But since he has had to stop working due to FTD and losing his license, I have seen moments of empathy. Putting his hand on my shoulder when I cried one day. Asking if I slept well. Just moments, but still...

We checked the online hospital wait times app, and it said there was only a 1 hour wait, so we decided to go in because his rash was spreading and getting redder. When we got there, there were not very many people there, only 3 before us for triage, and the waiting room looked fairly empty. But it was 4 hours from when we got thru triage till when we got called back to see a doctor! Rob kept wanting me to go home and come back when he was done. But last time I took him in, they would not let me come in with him due to Covid rules, and he didn't give them all the information. There was no way I was leaving him to deal with this alone. When the triage nurse, and the doctor asked about his prostate cancer, he told them he was NC - took me a minute to figure out what he meant. He is at stage 1C. The triage nurse immediately said the rash was shingles when she saw it, but when the doctor saw it, she immediately said it was infected. So, they did blood tests for infection and heart att...

 When Rob was at his day program, another member talked about using a ladder and his wife's concern that he would fall, and that she should do it. His reply was "what would he do if something happened to her??" Rob told me that gave him pause, and a lot to think about. Who would take care of him, if not me??