Transition time is difficult

Posted by 2me @2me, Jul 8 8:41am

Hello,
I am so very thankful I found this group! Sometimes it seems like several people are further along on this horrible journey. Could I get some thoughts/advice on the transition time? We may now be in it. Up until our son was diagnosed with glioblastoma last fall, my husband was just a little forgetful (short-term memory). He has had 2 2-hour cognitive tests, 2 years apart which showed little change, but…I see it! We’ve seen 3 different neurologists, and a neuropsychologist. With my 49-year old son having a lousy prognosis, it feels like I will be doing “The Long Goodbye” with 2 people I love so very much -at the same time. It is so difficult to know what to do, how to help my husband, what to say, how MUCH to take on (bill-paying, dealing with heating and plumbing folks who come for repairs etc). Case in point: this morning the generator repairman came. I should have tagged along, but my husband usually handles these things (he owned a heating business) so out of respect, I stayed indoors. When he came back in, I asked what the issue was with the generator…he could not remember. Yesterday, he wanted steak for supper, and was going in to the store to buy it. I asked him to get potatoes also. I stayed in the car. He likes grocery shopping. He came out with almonds. I didn’t realize that was all that was in the bag until we got home. He doesn’t like it when I try to take over too much. It is like tight-rope walking. How do you handle this period? Still very capable in most ways, but…..and thank you.

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@peggypierce

Your comments and insight reassure me that this journey doesn't have to be so lonely. My husband and I will celebrate 54 years of marriage in August. The past 9 years I have seen him change. He is very kind until he's not. He's more easily agitated and can be very difficult to deal with. I am learning the word "okay" works best during those times otherwise it escalates into a shouting session between us without any resolution. He's been diagnosed with MCI, however I believe he is progressing to dementia. His father, aunt and cousin were all diagnosed with alzheimers. Thank for allowing me to share my story. Bless all the caregivers and patients dealing with this challenging disease.

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Hi @peggypierce, I'm just popping in to say welcome. I'm glad you found the supportive group here. How are you doing today?

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@colleenyoung

Hi @peggypierce, I'm just popping in to say welcome. I'm glad you found the supportive group here. How are you doing today?

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Hi Colleen I'm struggling. Grateful for the kindness, concern and support.
Peggy

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@peggypierce

Hi Colleen I'm struggling. Grateful for the kindness, concern and support.
Peggy

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Peggy, I know that things are always changing when caring for someone with dementia. Adjusting is a challenge. What is a particular struggle for you at the moment?

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