Frontal lobe dementia

[Countryboy]

Hi@yorkie46

My wife was diagnosed with FTD almost 5 years ago. Her speech, self awareness and cognitive abilities were affected even in these early stages, so she has long lost the capability of interacting with our 3 grandchildren. This was particularly upsetting with the birth of our only granddaughter, as my wife had longed for a girl in the family, us having 2 sons.

The problem is that no 2 people with FTD are the same, so I can only relate how my wife has progressed. From the early frustrated, angry and argumentative stages, she quickly retreated into her own happy little world (thankfully). The downside to that is that she is now reliant on me to do everything for her (like many on here I know). On the plus side, if I sit her on the loo, she stays there until I check on her - the downside is that if I get distracted and forget she's there, she'd be there forever!

At least with her being so happy and "compliant", she willingly goes to a dementia activity morning each week and attends a day centre once a week also. I hope I'm not tempting fate but we are also able to join our great bunch of friends in out local pub each weekend.

I hope things improve for you both too.

Best wishes
Phil

Hi Phil just been reading your comments and No 2 people with FTD are the same I will go along with that that true I was diagnosed with FTD In 2003 having been previously diagnosed with Alzheimer’s in 1999 so in total almost 20 years like your wife my Verbal conversations were effected and still are but my brain function is good so I overcome the speech problem by emails and text after my denoises I continued working for 8 years until my retirement age 65 and I’m still fairly active for a 76 year old although I cant use cash points or car parking self pay machines ect the does frustrate me somewhat but that not the end of the world Phil you didn’t give your wife’s age with majority of Illness age is a major factor in recovery including Dementia


Cheers Countryboy

 

[yorkie46]

Hi Philbo, Spamar and Countryboy

Thank you all for your messages. It's definitely becoming clearer that nothing is clear and that everyone's experience with ftd and mixed dementia is different. Just thought I'd mention that my husband is now 83. I've been actively trying to get a diagnosis for four years but started noticing some problems following major heart surgery in 2010. His recovery from that was very slow because of difficulties with oxygen levels and low blood pressure post op. That reasons reason I had always questioned whether there was vascular involvement in his dementia. The doctors say it's primarily ftd mixed with some vascular aetiology. From what I've read ftd is often diagnosed in younger people so I suppose he's rather on the old side for that to be primary diagnosis therefore I don't know if that will have any bearing on the rate of progression. Don't know if any of that makes sense of if I'll ever know what to expect or how quickly things will deteriorate. He's definitely worse some days than others and more with some things than others.

 

[Philbo]

Hi Phil just been reading your comments and No 2 people with FTD are the same I will go along with that that true I was diagnosed with FTD In 2003 having been previously diagnosed with Alzheimer’s in 1999 so in total almost 20 years like your wife my Verbal conversations were effected and still are but my brain function is good so I overcome the speech problem by emails and text after my denoises I continued working for 8 years until my retirement age 65 and I’m still fairly active for a 76 year old although I cant use cash points or car parking self pay machines ect the does frustrate me somewhat but that not the end of the world Phil you didn’t give your wife’s age with majority of Illness age is a major factor in recovery including Dementia


Cheers Countryboy

My wife will be 68 in January and was diagnosed in Jan 2014. First signs, if I'm honest, were around a couple of years before that.

Apart from the tendency to repeat herself, one of the first signs was that she found it difficult to write her signature. She tended to write it in block capitals and couldn't understand why that was wrong?

The next "milestone" was she became reluctant to go out on her own and particularly, drive her car (didn't concern me at the time because we'd just changed it and she always took a while to get confident again). Our son happened to come across her near his house, where she'd stalled it going round a mini roundabout, so he had to take over and drive her home! She didn't drive after that and once diagnosed, the consultant advised us to surrender her licence.

I'm glad to hear that you've done so well coping with your FTD and long may you do so.

Best wishes
Phil

 

[yorkie46]

Well, some success this week. We went to Dementia drop in on Monday afternoon and my husband enjoyed chatting with a volunteer and my contact from Alzheimer's society. We were given some very useful information, he has actually looked at some of it today even though I always leave these things easily accessible to both of us. He read some things about FTD but clearly doesn't recognise the traits in himself. He said he hopes he doesn't become lacking in empathy, apathetic or behave in a socially unacceptable manner. He is/does all three! The OT phoned today and spoke to him, he passed her on to me to arrange a visit. Afterwards I told him she said she would be here about an hour, big mistake. He doesn't see why she has to come at all and why it will take so long, he doesn't need any help. I explained that he may not need help now but it was good to make sure his name is in the system so that if he does need help it will be easier. He's accepted that today!

I'm just trying to take things one step at a time.

 

[canary]

He doesn't see why she has to come at all and why it will take so long, he doesn't need any help. I explained that he may not need help now but it was good to make sure his name is in the system so that if he does need help it will be easier. He's accepted that today!

I think that was a very good response and well done for the quick thinking

 

[yorkie46]

Thanks canary

I'm learning! Trying to be one step ahead is very difficult and quite wearing at times. I'm sure others have found the same thing. I guess strategies are pretty individual but I think the more we share what works for us we may be able to build up a store for future use.

 

[PJ]

Hi @yorkie46 & @Philbo i was just reading through this thread & was wondering how both of your partners are doing? I hope you don’t mind me asking.
I have FTD & am interested in how others cope.
Thank you

 

[Philbo]

Hi @yorkie46 & @Philbo i was just reading through this thread & was wondering how both of your partners are doing? I hope you don’t mind me asking.
I have FTD & am interested in how others cope.
Thank you

Hi PJ

My wife is doing okay, all things considered. I have already mentioned some of the main aspects of how her FTD has affected her, but I guess the more recent decline has been in her mobility.

She has a tendency to stoop forward, which I think is partly due to the dementia's progression, but also possibly due to a very long-standing degenerative disc problem? So she will tend to lean forward even when sitting and her walking has become more of a shuffle.

Going up and down stairs has also become more difficult and again, I think that some of this is physical but she also seems to have difficulty working out what her feet should be doing. She certainly cant manage it without my assistance. To think that even a year or so ago, she'd be scooting up and down stairs quicker than I could ever do.

I hope things are going okay for you too?
Phil

 

[PJ]

Hi PJ

My wife is doing okay, all things considered. I have already mentioned some of the main aspects of how her FTD has affected her, but I guess the more recent decline has been in her mobility.

She has a tendency to stoop forward, which I think is partly due to the dementia's progression, but also possibly due to a very long-standing degenerative disc problem? So she will tend to lean forward even when sitting and her walking has become more of a shuffle.

Going up and down stairs has also become more difficult and again, I think that some of this is physical but she also seems to have difficulty working out what her feet should be doing. She certainly cant manage it without my assistance. To think that even a year or so ago, she'd be scooting up and down stairs quicker than I could ever do.

I hope things are going okay for you too?
Phil

Hi @Philbo
Sorry to hear your wife’s mobility has got worse. I am finding my mobility is a problem some days are worse than others. I’ve also had a disc problem for many years so I was putting it down to that but it feels like it’s my legs now? Thank you for taking the time to reply I appreciate it