Living with dementia

Welcome to our online support group, palred. Much of what you describe is very common. I too was ignored for years with serious memory complaints. I suggest a few tactics.

Do not discuss your memory concerns with your family.

Think of how your memory problems affect your daily life. For example, do you have trouble paying bills and handling money? Write this down. Do you have trouble remembering to take medications? Write this down. Whatever else you have trouble with, write down. Take this list to your PCP doctor. Ask for a thorough medical evaluation to search for causes of memory loss. These can include vitamin deficiencies, hormonal problems, or medication side effects. Ask for a referral to a neurologist and to a neuropsychologist. You need a comprehensive neurocognitive evaluation to determine if there are deficits. Keep in mind that depression can mimic early dementia. You have had enough life events to be in depression. You might also consider getting an overnight sleep study at a hospital sleep lab to look for sleep apnea, which is a cause of chronic fatigue and low stamina.

The website alz.org has a section on how to talk to your doctor. You might want to review that section. Do not let your doctor pacify you.

It is VITAL to rule out every possible medical cause of memory loss before making a diagnosis of dementia because these other conditions can be treated, if caught in time. I have discovered medical causes for my memory loss. I do not have Alzheimer's Disease, although I do have significant memory loss.

Please keep us updated. Don't give up! You have support here. Keep posting!

Iris

> @palred said:
> :'( Im 4th generation Alzheimer’s on both sides of my family. My Father had ALS. I took care of him until his last breath. So now it’s my turn. I’m 65 and have been having memory problems about three years. I was pretty certain it was an early stage of dementia. It finally got bad enough to be diagnosed last year. But neurologist said it’s hard to judge what stage I’m in so no treatment. Now I’m to the point I can’t remember what I’m doing 80%of the time. I forget everything. I can barely tell my grandson a story. I’m also having physical problems. Swallowing has become difficult. I’m losing a lot of strength in upper and lower extremities. I’m fatigued constantly and have no stamina. And no one wants to deal with it. My family doesn’t want to talk about it because it upsets them too much. My daughter is in complete denial. So that leaves me to go through this alone. Until I can’t anymore. I’m just struggling with having people I can relate to. I do see a therapist and she’s great. I’m seeing a specialist at Vanderbilt May 31 so hopefully I can get a firm diagnosis and treatment. Although with the physical problems I’m afraid that window has closed.

After researching groups in Mississippi, I have found the same. Support groups are for caregivers , not for persons who have dementia/ Alzheimer’s !

It appears no one has developed support groups for us ! The ones who live with dementia and need support, are interested

in forming support groups in our areas.

I went to church today and for the first time in a long time and I did not panic or have sense that the church walls did not seem like they were closing in on me. I am guessing that the meds that the Dr put me on must really be helping. I am glad because today was our priests last day as of June first he is being transferred to another parish and I was able to stay for Mass and say goodbye .