It has become severe in the last few months. Frontaltemporal lobe dementia. She is in the late stages and he said she would progressively worsen rapidly. She is able to feed herself and ambulate with assistance. Does anyone have experience with this? I don’t know how long my Mom may have left.
There don't seem to be any meds she can take. Two were tried this year and she had a bad skin reaction to them. She is getting slightly worse each week. She still eats, bathes and , walks good. Dressing can be confusing. She may put on a second blouse instead of slacks. She seems to have sundowner and gets anxious in the evenings. She sleeps a lot.
Has spurts of anger when told to do somethings.
She has a few other health issues. Currently it is higher than normally controlled blood pressure and her kidneys are not at full capacity. We are trying to get the blood pressure under control without harming her kidneys more.
As expected, I worry constantly, which is raising my own BP. I have been told that she is in the final stages by our PCP. If that is true I feel it is the very early stage of the final stage.
I guess only time will tell when this will end.
Just realized I didn't give my husbands age. He is 64 now.
You will also find good info at the FTD Association website and the UCSF website. There are a couple of books, too: "What if it's not Alzheimer's" and "The Banana Lady".
FTD is a highly variable disease as far as presentation and progression go. There are several variants (behavioral, semantic, primary progressive aphasia, etc). Some patients progress rapidly, some very slowly. When you've seen one case of FTD, you've seen one case, as the saying goes.
My Dad has the behavioral variant and his progression has been slow. That said, in the latest stages, patients tend to progress more rapidly -- but not always. Every case is different. If your mother is still ambulatory and able to feed herself, she is not yet in the final stage and may have some years left.
You can learn about what to expect on the FTD support forum. When you read about symptoms, keep in mind that all patients do not have every symptom or go through all the phases. My Dad went through an irritable phase, but never the aggression and anger phase seen in many patients.
You will also learn lots of effective coping strategies and tips and tricks. Pay special attention to the list of medications NOT recommended for FTD patients. Some of the drugs that are helpful in other forms of dementia can make FTD patients worse. Again, I am so sorry about your mother and wish you all the best in your difficult journey ahead.
There are medications for your mom that will help with her anger and moods. The geri-psych ward was a wonderful answer for my friend.
alz.org/documents/centralcoast/Dementia_Care_48_-_Understanding_Frontotemporal_Dementia.pdf
This give a nice overview, and the Alzheimer's Association has a lot of good information for caregivers of loved ones with all types of dementia, not just Alzheimer's disease.
She still has the ability to dress herself, although she sometimes puts her clothes on in the wrong order. She still showers but will forget to clean herself after a bowel movement. She does not remember to use soap when she bathes. Does not like to take her meds.
As to how long will she live. No one knows for sure. These diseases progress at their own pace. It could be a short s six months to twenty years, regardless of age at onset.
She will get testy at times when told to do something. I don't let her get away with it. I usually , in a stern voice, to knock it off or we will go home.
She is 74 and has had this for about two years or longer. This site is the only connection I have with the outside world, meaning no friends or relatives for support.
Well only two people in this area seem to give a damn and have visited her. Her sister is 12k miles away and is no real help.
There is nothing I can do to improve her condition, so I just contend with it.
I have filed for and gotten appointed as her guardian and am responsible for her estate and health. I filed IRS form 56 so I can sign her spot/line on our taxes. And it worked. I carry a copy in the van so I can have it available should the need arise. Next I need to contact all of the credit agencies to freeze or close her accounts to prevent Id theft. The banks have been taken care of as far as her money is concerned.
If she has a tendency to wander I would suggest trying a wheel chair to keep track of her if you decide to go shopping. It sure helps me. I just don't know what to look at or for in the ladies dept.
She might be able to get a job in the stores since she wants to stop and straighten the shelves(and she is good at it).
I wish you the best of luck and the blessings of God in this journey.
My mother was diagnosed with the same form of dementia about a year and a half ago. She is 92 and in pretty good health, probably better health than I am. Her dementia has taken a toll on me and my family. She is getting progressively worse and now she is verbally and physically abusive to me. I don't want to put her in a nursing home because she has everything here that makes her happy, when she is happy and not negative and nasty. We did not qualify for nursing home care when we applied but hopefully this is changing. I know this will be a death sentence for her but she is now lying to her aids that I am doing exactly what she is doing to me. She has good days and is very lucid and other days very angry and abusive. The doctor told us that she was in the late stages as well. I don't know what to do but if your decision on what to do is based on how long you think your mother will live I would suggest you keep her home as long as the dementia does not affect your health, however, even at 92, I don't believe my mother is close to her last days and I don't think I am capable of handling this much longer. I am 72. Not sure this helps or that I am just venting. Good luck on your decision. Mchugh5