Care Givers thread

[pigman]

Does anyone  have any experience with this horrible disease. My wife has been tentatively diagnosed with behavioral type FTD (Frontotemoral  Dementia). BvFTD is a rare type of dementia that usually strikes younger people, but can affect any age person. The person with FTD has no understanding that they are changing. Judy has two wonderful daughters that are doing all they can to help us deal with the situation. 

[beenthere]

Prayers to your family. 

[Magicman]

I have no idea about it but it is distressing to hear about your possible woes.  Our prayers will be with you, Judy, and her daughters during these uncertain times.

[barbender]

Sorry to hear this news, pigman. I've never heard this disease and I'm sorry you learned about it this way.

[customsawyer]

Sorry to hear about this. Sending thoughts and prayers.

[dougtrr2]

My mom had gradual onset Alzheimer's, but I think all of the mental deterioration diseases kind of get kind of blurred together. No matter what you call it, the person is not the same.  My dad tried to take care of my mom and did his best to hide the problem from us for a long time.  He literally wore himself out and drove himself to an early grave.

You have a rough road ahead of you.  Don't be too proud or ashamed to ask for help. People will want to help if you just let them know what to do. We will be sending our thoughts and prayers, but please let the family and friends around you help.

Doug in SW IA

[Roxie]

That’s very good advice, Doug. Bless you for sharing that. 

Bob my heart goes out to you. 

[red]

Google Caregivers Oxygen Mask . . there is lots of good advice on being a Caregiver and the idea of putting your Oxygen Mask on first . . you have to take care of yourself if you are working 24/7 you need a Break . . in 2006 when my Mother had dementia it took one month before the medicine started to help and I can only Hope that the medicine today is better . . Strength , Knowledge and Experience will help you through this difficult time 

[pigman]

Thanks for the prayers and advice. We are doing fine at this time. At present, she is easy to take care of with her only getting fixated on sycamore trees, road traffic and counting the floor tiles from the bedroom to the kitchen, exactly 24. Her daughters  had to take over her finances. She was donating to every charity that called or she saw advertised on TV. When we got married 7 years ago we had a prenup agreement with our finances and assets totally separate. Bad money management is a characteristic of this specific dementia. I plan to take care of her at home for as long as I can. From reading stories of others with FTD, I know there probably will be a time in the future when she will need skilled nursing care.

[red]

For @pigman 

[bluthum]

You are in for some very rough times. I assume a power of attorney agreement is in place?

I've no experience with that type dementia but hopefully it is like Altheimer's which affects the mental processes only rather than like Huntington's which affects both mental and physical processes. In both those types dementia the victim realizes they are impaired by the disease but not even slightly aware how severe the impairment is. Point is you can't expect the victim to do much if any self care, their reasoning is always suspect.

The best thing you can do is educate yourself as much as possible and proceed resolutely and in accordance. By all means try to take advantage of any help you can, both professional and personal. You're fixin' to find out who you and your wife's true friends are.

Best of luck with a very tough situation. 

[Gary_C]

Sorry to hear this Bob and all I can say is buckle up for a journey. My wife is probably entering stage 7 of Alzheimer's and it's no fun. She is in Hospice care and they are very helpful with weekly nurse visits and provide all her prescriptions but I would not advise the Hospice route till later in the progression of the disease. 

My wife had both PET scans as well as an MRI to make the final assessments and you could look into ongoing studies to see if there are any trials but I don't know of any that even mention halting the progressions. If you want to know some of the many factors that go into the progression of the dementia there is a book called "The End of Alzheimer's" by Dale Bredeson that gives some interesting information on the causes but my wife's doctor at Mayo discounts the path forward because they (Mayo) do not believe any of this at the present time is reversable.  

[beenthere]

You are a good man Bob
Sounds like you are doing the best you can. 

[pigman]

I think this topic has become a better fit in the care giver thread.  Will one of our admistators please combine it with the care givers thread.

[trapper]

Joyce and I are sorry to hear this.  Judy always posted a lot on the FF ladies facebook group.

[thecfarm]

I will be thinking of you both during these hard times.

[Ron Scott]

Bob, Prayers are sent from Jan and I. 

[pigman]

Tens of thousands of people have FTD and almost no one, including me until my wife developed it, had ever heard of the condition. Then one movie star, Bruce Willis, has one variant of FTD and quickly millions hear about the disease.

[doctorb]

It’s unfortunate that the term dementia is, to the general public, a catch-all term, probably incorrectly used by many.  While the disease, like many others, is widespread and quite variable, it often takes a public figure to become afflicted for the awareness of such things to increase.  Look at Michael J Fox and Parkinson’s disease.  So I hear your frustration in being so close to the problem, and feeling that very few are cognizant of it, but the publicity of these lesser known disorders often heightens scrutiny, sympathy, social acceptance and even sometimes research into something that needs more dissemination.  Thinking of you and your wife.  All the best.

[Texas Ranger]

Prayers your way, Bob.