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Hi laurel

Thank goodness for sites like this where we can find some information that might help us cope. Because once dementia is diagnosed it is all about coping.

I go to a local dementia support group where our mentor helps us with lot of good management skills, it really helps me to get by. A lot of hospitals can give you information on where to find a similar group.

My mum lived with me for two years with Frontal Temporal Dementia although originally it was called Alzheimer's. Her biggest problem was that she would run away so in the end I had no choice but to find her a dementia lodge. It is a heart-breaking decision to make though.

My husband has vascular dementia and is clingy like your husband. I have some care for him (5 hours a week) and he goes to Daycare once a week. Some Daycares will give you more than one day if you work so look into that. The bus picks Ray up so it is five hours door-to-door.

Try to get Power of Attorney so you can take over the bill paying etc, you don't want financial problems to add to your present woes.

Sue.

Written by  suew, Saturday, 17 January 2009 12:09

Hi Laurel, I am new to this community and live in the US. My husband exhibited symptoms in December 2004, was formally diagnosed and deemed disabled in April 2005and I cared for him at home until the end of May 2008.

We are all in this caregiving together, whether my husband's here or not, I still feel 'on call' 24/7 and always feel as though I am on tender hooks.

You pose some excellent questions. I am no therapist, but it sounds like Lawrie is in denial. The mere fact you aren't allowed into the doctor's office with him to get important facts and information is an indication he's still likely trying to keep some semblance of control in his life.

I found myself trusting my husband with all the finances and when I finally took over bill paying, I found out all bad news. Sounds like Lawrie is also a 'strong willed' person, which may be one of the attributes exhibited by the disease.

I cannot stress how important it is to get to an attorney and be proactive in getting everything 'in order'. Having gone and invested in living wills, power of attorney and power of health care has helped immensely in advocating for the best medical treatment for my husband, Bruce.

While each patient is different, what I have learned in talking to other families with members of FTD is the much more rapid decline in FTD in deference to ALZ. A support group will help to role play and assist you in the best approaches.

My husband and I talked about the disease openly. We also made a 'pact' from a packet provided to us by the neurologist's social worker in her office about ceasing driving when it was no longer safe. That was one of the saddest days for me in care giving.

Since Bruce's diagnosis, he has become increasingly violent with each drop in abilities. He's now being treated in a geri-psych unit after having aggressive behaviors....this is his 6th facility in eight months.

My heart goes out to you and please feel free to email me directly if needed.

~Glo

Written by  GloriaCSEP, Thursday, 12 February 2009 16:30