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Comments from the community :

Laurel, I think you should do whatever travelling etc you can. As you say you need to build up some happy memories and also to fulfill those plans you had for retirement. Retirement is not a date it is a state of mind. So consider this "early retirement" and make the most of it.

For a few years after Ray had his major strokes in we were able to do coach trips as holidays. We went on a couple of trips a year varying from five to fifteen days in length. I found after a couple of years that over twelve days was too much. So ten days was long enough for me to unwind and not long enough for Ray to get anxious to get home.

We traveled with a lot of seniors, who travel slower than the more active "over 50's". I took a wheelchair for Ray as he had stroke deficits and on the whole we managed fine. BUT I never got morning tea as he needed an escort to the toilet and after dinner he wanted his room so no friendly after dinner chat.

To travel with a person with dementia requires time spent in researching ahead of time what to see, where to go, what to do etc. Allow for it all to take twice as long as you expect. People with dementia need routine so Ray always wanted to know where we would stay that night, what time we would arrive at our motel etc. He needed constant reassurance that we were on the right road etc. which is why I chose coach travel rather than going on our own, though for the first few years I did some of those short breaks too where we just went somewhere and stayed a few days.

Anger over our "loss of a future" would take a lot more to explain than I can attempt here. The arguments seem to come from the confusion and insecurity which are a feature of dementia and in Ray at least a kind of fighting for some control. If you always thought you were right, with dementia you still do, and so you defend your position at every turn regardless of the crazy logic that can come with confused thinking. I try to minimise arguments by disengaging.

Ray also has that lack of emotional response, as if his ability to express emotion is now switched off. He rarely laughs or cries, just mostly is deadpan or with a slight smile. I think the expression of emotion is process thinking and he can no longer do that.

Hope some of this helps.

Written by  suew, Sunday, 25 January 2009 17:06

Suew's recommendations and insights are spot on. There are many emotions you'll wrestle with in this journey Laure....and one thing I have learned is the more knowledge I have, the more control I have over my emotions. I am able to 'respond vs. react' when I tap into what I know vs. the frustration I would feel if I simply 'reacted'.

There is a great site I found when I Googled Fronto Temporal Dementia and it's based in the UK. I have also found another site somewhere along my research which also discusses medications and how some used in Tx of Alzheimer's used in the early and mid stages of FTD. It has allowed me to speak knowledgeably with the doctors who are treating him who know little about FTD.

I was able to take the first two years with Bruce and travel and employing all the recommendations made by Suew. As the disease progressed, it became more and more challenging to travel and it also made more and more people who were our friends uncomfortable with his markedly changed behaviors.

If your husband continues to be stubborn, another facet of the disease, you may have to make separate appointment with his doctor and provide him more medical data. If your husband won't comply in protecting you with legal documents you'll need,, you may need to enlist the support of your healthcare providers in having him deemed incompetent. These are all sad realities we have to deal with individually....and my heart goes out to you.

Regarding arguments, if it's not life-threatening to him, damaging to something or someone or won't threaten your finances, employ 'affirmation therapy'. This is simply to agree even when you know what is being said is wrong. Refrain from 'correcting' your husband and you'll find this will diminish the arguments you have with one another.

It gets more and more challenging, so arming yourself with information will allow you to have greater control over your emotions.

We are now at the phase in advanced stages with Bruce where he has only momentary glimmers of recognition and then the dementia masks comes over his face and he disappears. There are also moments of high cognitive functioning where he'll be silly, funny or make a joke...and we hang onto those precious moments as they keep us going.

Please feel free to email me personally if you'd like to talk offline as I know too well what you're going through....adn where I live, the only neurologist and geriatric-psychiatrist both left our region. I am finding I have to education all medical staff now on this disease and how vastly different it is.

Also, start to keep a diary of when and how you see differing behavioral/ability changes. You may later begin to see a pattern develop which will be extremely helpful in your conversations with the neurologist.

Praying for everyone in this community....this truly is a journey of love and commitment.

~Glo

Written by  GloriaCSEP, Thursday, 12 February 2009 16:46