I' m sorry but you may think your account is accurate but being a friend a your step daughter i feel i have to defend her place in her fathers life. I've known Laura since we were teenagers and love her like a sister and your inaccurate account of what happened and why she HAD to return Charles back you makes me furious. Laura loves her dad more than anything and the fact that you took him so far away from her doesn't seem to ever come up in your blogs. Knowing the difficulties of caring for someone with this affliction one would think you would be a bit less judgemental on your husbands daughter. As you know finding real support to back you in his care is not easy. Lauras support base is very limited and although she would have loved nothing better than keeping her dad close to her, she needed to do what was best for dad at this time. So unfortunately that meant bringing him home. I'm sure his care takes alot, so why cant you get in home assistance for a few hours each day so you can have a break?

Great article! I wish that more people could remember that Alzheimer’s patients are still parents and people. It is such an unfortunate thing to happen to any family. My mother has Alzheimer’s and is living in an assisted care facility named Prestige Care. I feel that the ones that deal with the most pain are the immediate family members of the affected patients. Sometimes it’s difficult when our loved ones won’t recognize us.

I love it and I want to know more about Charlie. My husband is maybe way past Charlie in this awful dementia, I need all the help I can get and what to expect from real people, not books that don't tell real stories. The doctors don't seem to have any idea what happens. help!

College, read my comment. I included the link for their website. Contact them directly, they will be able to get your help while the paperwork is being processed. They get reimbursed after that by the VA. Good luck!

How do I apply for Home Based Care Plan. Do I just call VA, my husband is getting worse and I need help!

Hello all, I too have been following your stories, Marlis you are amazing and Freqflyer very informative.
I fought to bring my dad back to his home and I would temporarily move in with him to be sole carer. His non live in companion said she would help and my sister too. My dad has bowel, liver and lymph node cancer, a triple A, huge incisional hernia , a stoma and is 90 yrs.My sister has been here for one hour a fortnight and his girl friend who's 84 comes for 2/3 hours 4 days away, she doesn't lift a finger to help and to rub salt in my wounds is paid large sums of money whilst I'm living on my own personal savings. I've taken a career break from the ambulance service, the hospital where he had an emergency op to remove some of the tumours in his colon said he would only have a few weeks to go, it's now 6 months later, I'm at the end of my tether. Dad seems ok one day and very I'll the next but he and his g/f are insisting I return to my own home. Please offer suggestions what I should do?

Marlis, I wondered how long his daughter would be able to care for Charlie. At least she offered to give it a try. And you had a few weeks respite. And bless her, she now has a new found appreciation for what you do! I wish more family members would do this, then more of them would understand! Hoping you get the services you and he have in place quickly. Have you looked at facilities at all to find one that will best meet your needs? Undoubtably, the time will come.

God Bless you, I know how difficult it is. I was sole caregiver for my husband as he progressed trough Front temporal Dementia (FTD) He also suffered from hallucinations and Sundowners. Basically he became a naughty 6 foot 2 little boy who would be into mischief constantly. I went from 125 pounds to less than 100 pounds in just a few months. The hardest part was not getting any sleep! One of the bad things about FTD is they can become easily agitated and dangerous. I found out too late that he was spitting out his pills. One morning he became agitated and came after me saying he was going to kill me. I was able to escape and call for help. I had been told if that ever happened I would have to put in in a lock down nursing home. He was placed in such a facility and soon couldn't or wouldn't eat. I went there each day and tried to get him to eat. He either couldn't or wouldn't swallow. He had a DNR and no artificial procedures in place, and was being given palliative care. .He was once again loving when I visited daily and loved it when I would wheel him out into the nursing home garden and play music for him. Within 2 weeks he went into a rapid decline and died just 19 days after going into the nursing home. My best advice to you now, is get help when you need it if you can, wish I had .

Marlis: great update. I too have an empty dance card when it comes to another human handy for the nocturnal dance to the bathroom every hour. Mom (92) been my roomie since 2010; the bladder on warp speed seems to have started in hospital in June with an ER visit with congestive heart failure. The new $398. Vesicle script does not seem to work. I was horrified at the price of 90 days of this medicine since I run the entire house on a bit over $700 a month. ( Interesting comparison:-that $398 would have gotten me 16 hours of in home care, or two nights.) God is the only reason I'm still standing. I'm normally a positive person, and a tough cookie. Very concerned that I'm not doing well. Mom has $4k in the bank, and she and POA out of town sister are not working to reduce that amount- are not interested in Medicare and the managed care option. I'm beyond burned out. Was a commuter/caregiver for thirteen years prior, as Mom and Dad lived 45 miles away. At least I had an income then, and could go home ! I'm 58, and have paid off the house, kids are grown, I've divorced 14 years ago. Older brother and younger sister just seem to look the other way, so I know I have to go this alone. I find hope in numbers: I think there are 63 million of us. Time to pester the 'government' that's in business just for itself.

Marlis, when you wrote the time before I was wondering how long Charlie's daughter would be taking care of him before realizing how much work is involved.

I am laughing at the white-out, oh my. Now a days the younger generation doesn't even know what that is :) And how clever using grape juice inplace of wine.... grape idea !! Reminds me of an episode of the Honeymooner's when Alice secretly put grape juice in a wine bottle and Ralph and his buddy Ed were drinking it and started to get drunk :P

Hope you get the in-home help you need ASAP. Or will you still be looking into a continuing care facility?

Oh Marlis, how nice to get this update on you and Charlie . I have wondered how you get along with no help. Hopefully you will soon get the help you need. My husband of 52 years has been gone over 4 months now, and the loneliness is almost unbearable at times. I would just encourage everyone to treasure each and every day with those they care for. God's blessings to you, dear friend, and to all who read your most interesting writings. 🔆