Jim has been a solid stage 4 according to the list that is available to us. Lately though he has been sleeping alot. Will putter in the yard for 10-30 mins then nap, Monday and today he napped all day. His meds have not changed. He has been wanting to sleep with me, and has been ok, although restless. He hardly talks, can't comprehend conversation, so avoids all of us, staying in the downstairs family room. He reads the FTD website, tries to read the newspaper but is finding it more and more difficult. I am so stressed, he seems so far away. Then worrying about my Mom's outcome with this Interstitial Lung Disease and her biopsy next Tuesday, has me concerned because there is a 25% chance of a collapsed lung. My "aquired" daughter Jenn and her 1 & 2 yr old daughters (who Jim adores) will come up on Tuesday am to stay until Wednesday incase Mom has to be kept overnight. That way I can stay with her. The Medical Center is an hour away. Then Dylan is stressed seeing us stressed and losing all of his Papa's attention. We have a meeting here with Dylans therapists today at 3. Friday morning the VA is sending out Home Health to go over what we need. We were approved for 6 hrs a week. I'm just so sad, Jim stares off into space, and I fear he is heading into Stage 5. I have to remind him to change his clothes and lay them out, remind him to shower, etc. He is almost incapable of making a decision. I need to get out of here, but he panics when I'm gone, because he can't remember where I am. I put an erasable board on the counter and leave notes, works when he remembers to read it. Mom tries to remind him of where I am. I anxious, tired and oh so sad. I know there are no answers, and I am still seeing my therapist twice a week, but nothing helps. I know so many of you have it much worse, but I miss my husband so damm much.
Susan, my DW has dementia as the result of a brain stem malignant tumor removed, and then six weeks of radiation, all of which took place 26 years ago. Long story short - five yrs ago she had a seizure that really put her in this final condition of dementia. She sometimes seems to understand minor things, but mainly has no short-term memory and lives in the past (way before we were married), and sometimes thinks her folks (deceased) are out front waiting to pick her up. She can't speak to be understood, and just gives me a blank look if I try to explain something to her like "you have to take your shoes off 'cause it's bedtime now, and you don't go to sleep with your shoes on". If she fusses to much I just leave them on. I miss my bride too, but what can you do? We're all in this together, but it does help to get the cyber-hugs.
Susan, the sleeping is normal, but it sounds like he may really be depressed on top of everything else. If he is ready the FTD site and what he has to look forward to, along with everything else going on, he could be feeling overwhelmed and hopeless. I know I would be.
Susan-I know it won't make you feel any better-but I think with your multigeneraltional (like that word) problems you have more on your plate than most.
I'm not sure what stage Tom is in but it's FTD. His problems begain with the shuffling gait about 10 years ago and has now progressed to where he can hardly get around even with the walker. I bought a small "transfer" wheel chair the other day to see if I can learn (build up the muscles) to push him in it. I cannot lift a regular chair in and out of our auto. He's fairly aware in the mornings but as the day wears on he gets foggier and foggier. He wants me home all the time. When I'm gone he'll call me repeatedly. He does not start conversation and has a difficult time following one. Some days he will sleep for 10-18 hours at a time. Most days he is up and down. His only joy in life is eating or smoking. We went through several years of awful behavior but he's now usually rather cordial. He's still driving -- to the corner store for smokes or to the bank or to a small local restaurant where they know him well. I know, I know -- I'm going to tackle the driving issue soon. Yesterday while I was at my counseling appointment and then visiting a care agency to arrange for an out of town respite for me, he must have gone for smokes because later in the evening he told me he had fallen at the store. Said some nice guys helped him up. I said maybe you shouldn't go to the store alone anymore whereupon he went into a rage. Today while he was sleeping I went and stocked up on smokes and cash for him so the driving issue shouldn't come up for awhile. Ten days from now will be the first time I've left him in someone else's hands. I pray that it goes well.
Susan, you have so much to worry about, sending cyber hugs. DH is 59 now, on seroquel, somewhere around stage 6 and it depends on the day how much he sleeps. Some days like yesterday he's up at 8:00 am (early for him), eats breakfast and wants to know when/where are we going today. An no naps. More usually he gets up, eats breakfast and goes back to bed around 11:00 for a 1-2 hours nap. Conversation is getting less and less; I'm not sure he knows how to log onto the compute anymore, and I know for certain he wouldn't be reading about FTD since he's in total denial that anything is wrong with him. Tries reading the sports page but I doubt he can truly comprehend what he's reading. Hasn't driven for a year, thank God, I just took the car and put it away in a garage so he can't see it anymore. He doesn't ask to drive my car, so we've seemed to conquer that battle. I do all the reminders - clothing, shaving, showering and the latest is policing toileting so he's clean (white underwear don't lie!) and he requires 24/7 supervision. Take a deep breath and know we all are here for you when you need us.
Weejun, I don't remember where it is, but google moving someone from wheelchair to bed, etc. There are videos that show exactly how to use it. Oh, I know, it was when they were showing how to use a transfer belt. Get one of those!! you grab it, instead of HIM.
If you are going out of town, can you get the car away from the house so whoever's tending him doesn't have to deal with him wanting to drive?
Nancy B...Check with your car dealer..you can get a key made without the "computer chip", and it will unlock the car but not allow it to be driven..Also, you can get a regular key made at walMart or any place that makes keys...that key also will not allow the car to be driven. I think this only applies to later model cars. It is an easy solution, and on some cars, you can start it up, but the minute you put it into drive or reverse, the car will stop. Hope this helps.
Our aide starts on Tuesday! She will come for 2 hours 3 days a week! Jim has accepted it well, knowing that he cannot be left alone for fear of falling. He now needs someone in the bathroom when he showers as his balance is getting much worse, he is now using a cane. She will vacuum and do other light house work, go out with him to the garden etc. This gives my Mom and me time to get out and have coffee, breakfast and shop. Guilt vs relief is a bit of a problem, but Jim is very much in favor of me getting respite. God how I love him. It's so hard with FTD, he knows how he is failing. Wish me luck on Tuesday, Mom has her biopsy, please pray that she does not have a lung collapse (25% chance) Hugs to all. PS: I've hidden the car keys :0) Oh he finally broke down and asked "our" daughter and future son-in-law, if they could take over the gardening and yard work, he said he just doesn't have the strength for it anymore. So said, he loves to garden. Believe me though, he will be out in his chair supervising, lol. Of course they said yes, and Courtney commented that Carmen being a city boy needs to learn to do these country chores!