Frontal Lobe Dementia

[canary]

No, you are not alone. Apathy, loss of empathy and emotional blunting are all early symptoms of FTD. My OH likes to spend hours in silence, on his own in a quiet room with his android tablet. He gets stimulus overload and any noise will set off an outburst of rage, so I cant have music on, or TV that he doesnt want to watch, housework and other work in the house is difficult and Im tip-toeing around like theres a sleeping baby in the house!

Yes, I miss the hugs and other shows of affection too. I have recently come to the conclusion that most of the time I am just not in my OHs mind. He is not purposely ignoring me, he simply does not think of me. I used to complain that he treated me like a housekeeper, not a wife (and I too considered divorce), but since his diagnosis I understand why. It is a hard thing to get your head round. I have had to stop thinking about myself as a wife and to think about myself as his carer.

When you are dealing with FTD routine and environment are everything. By routine I mean, of course his routine - its no good trying to impose your routine on him OH has his own rituals and routines that help him get through the day without having to make too many decisions and I have to go along with them. His decision making is very, very poor and he has made some spectacularly bad ones. I can still leave him for a few hours a day (he is still in quite early stages), so I have joined a couple of groups to give me some sanity and when things get too much I go round to the local library. It is becoming increasingly hard to find things for "us" to do, although he will go to a couple of coffee groups. They are not dementia cafes as he is still very aware of his surroundings, but most people there have experience of dementia and are very understanding.

 

[dancer12]

dancer123

Morning/Afternoon/Evening:

I'm in Canada so I'm in a different time zone. Thanks for all the help. It is a lot clearer now. I was so confused, He always says it's not him, he's okay - I'm the problem. He is in early stages too. There are many help groups that I can go to that can help me understand the illness more, what to expect, how to help him & myself to cope but I don't want to leave him alone so many times. Since the kids have grown up, I like to socialize. When he was working it was fine, but he's home now and I don't like to be gone 5 days a week. I guess I've got to set priorities. I can't take him on long trips because he tends to get tired. WHAT A MESS.

Thanx again for helping.

 

[canary]

Yes, it is a mess dancer. My OH says there is nothing wrong with him and that its me too. Its a symptom of dementia called anosognosia which means that he is literally unable to understand that there is something wrong, so in his mind it has got to be me. The trouble is that as he has no short-term memory loss he is very, very good at convincing people that, indeed, there is nothing wrong with him. At first he was diagnosed with depression due to marital problems (!) and the doctors thought I was making everything up. Even now his GP (family doctor) doesnt believe the diagnosis.

 

[dancer12]

dancer123

Hi:

I feel like I'm looking in a mirror. You are so sympathetic & knowledgeable about this illness. You must have done a lot of research on it. It feels like I've met half sisters. It absolutely helps to talk. Thanx.

 

[canary]

Im glad I have helped dancer
My mum has Alzheimers, but this is a very different beast - very, very different in the early stages. Might I suggest a couple of things that I have learned from bitter experience?
1 - get POA. OH paced and fretted, accused me of trying to take him over, but we both had POA organised at a solicitors (he wouldnt have done it otherwise)
2 - Try and protect your finances as far as possible. Not easy to do as although they can make some horrible financial decisions, if they still have capacity they can (and do) object to anything you try and do.
3 - Turn on the parental controls on your wifi and change the password. 'Nuff said
4 - Learn to say no without saying "no". Yes we can go out, but its raining now so lets go tomorrow. Yes you can buy a pocket watch with pictures of naked ladies on it, but I think a plain wristwatch looks more classy. Yes we have no bananas.........

 

[dancer12]

dancer123

Hi:

All advice is very appreciated.

Already have POA & wills written by attorney. Thinking about changing my will with different attorney. He is my POA and he is mine. If I go first then everything goes to him, including house - I'm worried he might sell for a nickel (if he is not declared incompetent) and the kids would end up with nothing. So I'm thinking about getting my primary on POA changed from him to my sons so he can't get total control. Don't understand what you mean by WiFi controls though. I'm learning to say NO nicely but the hurt is still there and will be for awhile.

It's like losing someone twice.

My dad had this illness and I saw what it did to my mother so I'm not new to this. I was married at the time but I still saw enough of what was going on and I could see how frustrated she was getting.

Again all your knowledge & advice is much appreciated. You must be so patient with your husband.

All your help is much appreciated.

 

[ftdseeker]

Hello, my Mum has recently been diagnosed with Frontal Lobe Dementia. She is 61 and her symptoms started last year.

Just wondered if anyone has any experience of this, it seems like one of the less 'common' forms of dementia and I don't know what to expect for the future.

Hayley,
my mother has FTD- she is 61 and coming to the end -

but i am still hopeful

 

[canary]

Hello FTDseeker, Im sorry to hear about your mum.

No, dancer, Im not very patient with my OH - as I said, the lessens have been learned from bitter experience , but I have discovered that not saying "no" has made life a whole lot easier. As you say, the hurt is still there and there is still the worry that everything will suddenly blow up, but it is much better.

Wi-fi is what wireless internet connection is called here in UK. Sorry, I didnt know it had other names in other countries. The internet service providers have parental controls that parents can switch on so that children cannot access "inappropriate material" (by which they mean porn, dating, gambling and drug websites). My OH was always a highly principled and moral man so it never occurred to me that any of this would become a problem..............
It sounds like a good idea to change will/POA. In UK there is the option to leave your share of your property to someone else (usually children) in your will and OH and I have done this. I have also moved a lot of our savings into an account that is in my name only.

 

[Shedrech]

hi dancer12
welcome to TP
canary has been so helpful, I have just one thought
might this thread help in how you approach your husband (it helped me get my mind round how things are for my dad who has mixed dementia)
http://forum.alzheimers.org.uk/showthread.php?30801-Compassionate-Communication-with-the-Memory-Impaired
best wishes

 

[canary]

Hi Shedrech. Thanks for posting the link.
I must say, though that compassionate communication doesnt work so well with FTD until they are pretty advanced. I use it all the time with mum (Alzheimers) and have done right from learning about it, but OH is still very well orientated in time and space. People with FTD often dont lose their short term memory, dont keep repeating themselves, dont get lost, confused about where they are, who people are or what is happening around them until an advanced stage. So OH can usually see right through the "love lies". This is extremely irritating when OH is gripped by his latest delusion or obsession. There will come a time, though, when it probably will work.

 

[dancer12]

dancer123

hi dancer12
welcome to TP
canary has been so helpful, I have just one thought
might this thread help in how you approach your husband (it helped me get my mind round how things are for my dad who has mixed dementia)
http://forum.alzheimers.org.uk/showthread.php?30801-Compassionate-Communication-with-the-Memory-Impaired
best wishes

hi shedrech:

Thanks for your post, I just need more patience, I'm still adjusting. I thought this part of my life was over when our kids grew up. Now I find myself doing it all over again. I haven't got as much patience as when I was younger. All advice is welcome, it's such a terrible illness and I sympathize with anyone who has to go through it either patient or caregiver.

 

[dancer12]

dancer123

Hello FTDseeker, Im sorry to hear about your mum.

No, dancer, Im not very patient with my OH - as I said, the lessens have been learned from bitter experience , but I have discovered that not saying "no" has made life a whole lot easier. As you say, the hurt is still there and there is still the worry that everything will suddenly blow up, but it is much better.

Wi-fi is what wireless internet connection is called here in UK. Sorry, I didnt know it had other names in other countries. The internet service providers have parental controls that parents can switch on so that children cannot access "inappropriate material" (by which they mean porn, dating, gambling and drug websites). My OH was always a highly principled and moral man so it never occurred to me that any of this would become a problem..............
It sounds like a good idea to change will/POA. In UK there is the option to leave your share of your property to someone else (usually children) in your will and OH and I have done this. I have also moved a lot of our savings into an account that is in my name only.

Hi Canary;

This is such a great help. Just knowing that there are others that feel the same way I do. When does it end?

Many thanx again

 

[Hayleymarie]

ftdseeker so sorry to hear about your Mum Sounds like everyone is struggling with losing the person who is closest to them.

My Mum acts completely different to everyone's partners/parents it seems - she goes really hyper and can't stop talking for longer than a few seconds, sometimes I hope they've got it wrong but I'm sure that's just wishful thinking.

 

[canary]

ftdseeker so sorry to hear about your Mum Sounds like everyone is struggling with losing the person who is closest to them.

My Mum acts completely different to everyone's partners/parents it seems - she goes really hyper and can't stop talking for longer than a few seconds, sometimes I hope they've got it wrong but I'm sure that's just wishful thinking.

It sounds like your mum is in the manic phase. My OH doesnt have this, but I have heard of it happening with FTD - some people with FTD get misdiagnosed as having bi-polar when they are at this stage.

 

[Hayleymarie]

Yes Canary that's exactly what happened last year the doctor tried to say it was bipolar but we knew it wasn't. Manic is definitely how I would describe it. Seems you are so knowledgeable through your experiences.

I can't imagine it happening to my partner when we are "older" so to speak. I think I would really struggle to cope and it must require a great deal of strength and patience.

 

[canary]

Are you your mums main carer HayleyMarie?

 

[Hayleymarie]

No it is my Dad Canary. Are you the main carer for your partner?

 

[canary]

Yes, Im my husbands carer.
How is your dad coping with being your mums carer? Its good that you are concerned for your mum as well. All too often the family doesnt want to acknowledge that the problems are due to FTD. Although our (grown up) children know there is a problem, OHs siblings dont believe that there is anything wrong.

 

[Hayleymarie]

My Dad is coping fine as she is in the very early stages. Forgive my ignorance but each time that my Mum gets sectioned they put her onto different drugs and she is okay for a month or two then declines again, might it be that eventually they will run out of drugs to try on her and she will not be able to be 'controlled' as such?

Must be so tough to see your husband in this way, and not at all helpful if his siblings will not accept there is a problem In order to help the best they can surely it is best if they understand his condition fully?

 

[canary]

You would think that they would want to know HayleyMarie, but I think they are in denial and Ive barely seen them since his diagnosis.

Im afraid I dont know much about drugs used, so I cant offer advice. I think it would be best to talk to his doctor/CPN. It must be such a worry if shes been sectioned several times. Does there seem to be a trigger, or does it just come out of the blue?