Living with dementia

palred

:'( 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.

David1946

https://alzconnected.org/discussion/69228/living-with-dementia

I'm 78 and was diagnosed last November and I'm experiencing lot of what you're experiencing. I forget a lot can't remember crap.l have horrible nightmares. The meds I'm on help quite a bit with my dreams so they are not quite so bad

palred

David I know it’s a rough time. I think everyone is just in denial. Can’t deal it.

David1946

You are right its a difficult time and I was i denial but I think that I am learning to live with-it most of the time at times it is difficult to live with it especially after I have one of my nightmares. Last night I had another one (i think the reason I am supposed to take my meds around 2 hours before bed time which means around 8 p.m.) last night we went out and got home around 10 and did not take my meds until 10:30 so I am guessing taking meds at a specific time makes a difference. I started to panic and just wanted to get the f k out of the house and started shaking like crazy and crying and yelling and it felt as if the room started closing in on me. All this woke my wife up and as usual she calmed me down by saying take some big breaths and I did and I finally went to sleep. Then around 4 a.m. I woke up thinking it was time to get up and started to shower and get dressed when I realized it was only 4a.m. not 6a.m.This not the first time that this has happened this scared the crap out of. I am just lucky that I have yet to set off the alarms my wife installed to let her know that I might be wondering which has happened once before I actually wondered and I was out the front door before I knew where I was .

Iris L.

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

https://alzconnected.org/discussion/comment/209359#Comment_209359

My therapist has been amazing in her support and knowledge about Alzheimer’s. It’s great to talk with someone that understands what I am going through.

palred

That you for your support Iris. Hopefully I will get a complete diagnosis this month. It sounds like really tough and scary times you went through. I’m glad to hear you were able to be accurately diagnosed and successfully treated. It gives me hope.

Iris L.

Palred, in addition to your therapist, please feel free to look to peer support. Your peers know what you are dealing with, too!

Iris

Rebecca L. Oxford

> @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.

Rebecca L. Oxford

Dear Palred, I am third generation Alzheimer's and am on Leqembi. My main problem is that my relatives, all except my brother who lives 2,000 miles away, are in complete denial. My husband is willing to take me to my Leqembi infusions but does not understand that understand that I might need to move into assisted living. Like you, I feel I am going through this alone. I want to help my relatives give up their denial and start helping me consider the future. Let me know what strategies you can begin to use in order to help relatives get on board with your diagnosis.
I can't seem to find Alzheimer's patient support groups here in northern Alabama. All support groups -- and there are plenty of them here -- are all for caregivers. I am seeking support for myself and people like me. Perhaps you or someone else who read this will know how to find online support groups for Alzheimer's patients.

dlubritz

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.

Iris L.

Welcome newcomers! This message board has served as an online support group for many of us. Feel free to post and to support each other.

There used to be a CHAT feature for real-time support but it was removed at the last update of the software program. 😕

Some local chapters may offer a Memory Club for early stage PWDs. You might call the Helpline at 1-800-272-3900 and ask to speak with a Care Consultant or an Early Stage Coordinator. Ask if there is a local Zoom or in-person support group.

Or you might start your own Memory Club if you have one or two more PWDs.

Please keep posting here and keep supporting each other!

Iris

David1946

https://alzconnected.org/discussion/comment/209314#Comment_209314

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 .