PODCASTS - Helen Hovdesven, family member
Helen Hovdesven's husband Arne was diagnosed with Alzheimer's disease a number of years ago. Before he passed away in the Spring of 2009, Helen generously shared her story in an audio slide show and a series of podcasts. She currently serves as co-chair (with Sylvia Mackey) of the Patient and Family Council of the Johns Hopkins Memory and Alzheimer's Treatment Center.
Long journey begun. Scenes from Helen and Arne's life
0: 24 Became involved because of my husband
1:18 Both had children alone
2:21 Lost his temper uncharacteristically
3:18 Everything was done legally
4:18 Everyone's first inclination is to treat
5:25 Telling friends
6:17 I just can't watch this
7:15 The isolation is so hurtful
8:10 I think you realize they don't get it
9:14 Go visit and stay a friend
Early decisions. Helen describes symptoms her husband had and decisions they made.
0:12 The disease I studied for physiology was Alzheimer's
1:01 He did have Lyme's disease
2:02 Forgot where the key was
3:00 He made all his own decisions and articulated them
4:03 He has a pacemaker and we didn't replace the battery
5:05 A friend said why don't you let Arne do what he wants?
6:04 Didn't have to worry because she understood
7:06 People shy away when you tell them
8:07 I don't think its forgiveness
9:07 Go and visit your friend
Psychological support. Helen talks about receiving psychological support for both she and her husband.
0:16 Referred to Hopkins
1:13 This is a long, long goodbye
2:10 Use their psychiatric support
3:03 When Arne was diagnosed we saw a psychologist together
4:04 I never lied to Arne in my life
5:04 He was comfortable sleeping by himself
6:10 I told him myself he would stay at assisted living
7:09 The reason it looks so familiar
8:08 Asked a friend to meet me
9:04 The psychologist called me
Coming to terms. Helen deals with her husband's inability to communicate clearly.
0:08 Participating in things that would help
1:01 I was a health advocate professionally
2:03 How blessed we are to reach 80 or more and have our body and mind
3:06 Picked up his arm and had taken his watch off
4:05 There's a real I know you way deep down
5:02 To read what the patient isn't saying
6:07 They were so frustrated because he wanted to stop
7:03 Must like yourself first
8:04 You go home alone, you are socially isolated
Focus on caregivers. Helen talks about the multiple roles caregivers fill.
0:05 Arne decided to donate his brain
1:02 You are doing so much for us
2:01 I never cease to be amazed at the men I meet who are caregivers
3:04 Even if it's an obligation it still takes courage
4:02 If you have cancer you have hospice but dementia doesn't
5:03 Who knows what the precipitating event will be?
6:05 Until they focus on caregivers it won't help
7:06 Make sure you have support
8:06 Don't look too hard at what might go wrong
9:05 You need an advocate as a patient