Newbie looking for advice

Jeanne C.

My 64 year old husband was formaly diagnosed with FTD a couple of months ago. It seems to be progressing so so fast. He's ambulatory but needs help with some ADLs. We found a great doc. We're working with an elder care attorney to get our ducks in a row. He's starting adult day care in the coming weeks (I work full-time and know I need help).

What am I missing?

This is the hardest thing we've ever done. My heart is breaking every day. I just want to be sure I'm doing everything I can for him.

Ed1937

Hello Jeanne, and welcome to the forums. Working with a CELA early in this disease is one of the best things you could do. Congrats on that. I would suggest that you read all the posts you can get an idea of what caregiving actually is, and how to handle the rough patches. Although FTD may differ from Alz. or other dementias, I'm giving you an excellent link to understanding the dementia experience. It's an excellent read, and should be very helpful for you. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun  

When you can spare the time, it might be a good idea to see what facilities are available in your area, and you might even tour some of them, while asking pertinent questions about how they run things. Many facilities have waiting lists, and it won't hurt to get your name on them instead of waiting for a crisis to happen, then be left out in the cold. I'm sure others will have more input for you. And as always, if you have specific questions, please ask. We have a lot of great people here willing to help.

EDIT: One of the best things you can do for him is to take care of yourself. The better you do that, the easier your job will be, and the better it will be for him. If you have family around, ask for help. Never refuse it.

Pat6177

Jeanne, welcome! When my DH was diagnosed, we were given a booklet and essentially told good luck. The medical professionals don’t seem to know much about dementia. Almost everything I learned about dementia, I learned on this forum. I read it almost every evening. Not every thread applies to me but I still read most of them. I have found it so helpful to read about what others are going through and it has prepared me for some of my DH’s progression. Every PWD is different and yet there are common themes. Reading here has prevented me from being blindsided by some of the new behaviors. Keep reading, keep posting.

Lgw

My DH has Vascular Dementia and I have received so much help on this site. Just be ready to poor your heart out or rant. We have all been there.

Denise1847

Hi Jeanne C,

Try reading "The 36 Hours Day". It is the best book I have read on the subject. It is difficult to read but knowledge is power and this disease can make you feel powerless. God bless.

Jeanne C.

Thanks all. I have been "lurking" on the site for a bit and have already learned some things from you all. I'm learning to ask for and accept help (very hard for me). I struggle. I cry. And I definitely lose my cool. But I also do my best to TRY and remember that he's not giving me a hard time; he's having a hard time.

Bonnietx

Hello and welcome. As you know, FTD brings very unique sets of challenges. And what challenges they are! I am also caring for someone with FTD. In addition to the above resources named, I’d also recommend theaftd.org as well as the FTD support forum they link to on their “support” page.

buoy_over_board

I'm brand new to this site. My DW was diagnosed with VD about 2.5 years ago. Her symptoms and treatment are virtually the same as if she had MS. She is on Tizanidine and that does a good job on the symptoms, but knocks her out. It's not a huge exaggeration to say that her life is confined to the bed and the couch. Her hygiene is declining, as is her conditioning, which contributes to her depression.

I'm a private person, so for me to go to an on-line forum shows my level of desperation. I'm not well suited to be a caregiver, and am having difficulty dealing with this.

I am posting because I would really like to hear how others deal with this, what to expect going forward, how to protect my sanity/well being, etc.

M1

Welcome Buoy, Loveskitties started a new thread for you too--the mechanics of the site take some getting used to. This is a good forum and hopefully will help you. All of us have our limitations as caregivers, no shame in that--and recognizing your limitations is important.

My partner of 29 years has been in memory care for a year, not by my choice, but because care at home became unmanageable (and included not recognizing me and threats of violence). Are you clear on what your options are, personally and financially? those two things influence each other. there may come a point at which putting her in a facility works better for both of you. Or, if you can afford it or find it, some in-home help of some variety such that you get some breaks and time for yourself. A lot of states have in-home care programs, because it's generally more cost-effective to care for folks at home than in a nursing home. A lot of folks use day programs, too, but if she's bed- and couch-confined that may not be your best option.

The more you find out about the options you have, the more in control you will feel. Glad you posted and good luck.

toolbeltexpert

Jeanne welcome to the forum. My dw has Alzheimers so I can't speak to ftd. But you asked what are you missing. First and foremost you still have time with your dh try to find things he can do. Use what he has, focus on that. Next you need to find a way to take care of you. Finding out how to do that early on is best. It's tough being a caregiver all alone. I learned deep breathing helps get rid of the stress. Watch teepa snow or careblazer videos. I found them most helpful in dealing with the different behaviors. You sound like your getting a handle on the legal stuff, I am glad I did.

Keep posting and reading we are all in the same leaky boat.

Stewart