I'm back, but this time I'm the one with dementia

My new Normal

It's been a long time since I've been on this message board. I was learning about my mother's dementia, and this forum was beneficial. Since that time, my mother has passed along with three of her sisters. All had dementia. Additionally, three of my mother's brothers have dementia too. My genetics testing indicated I was at low risk, but that was off slightly. So here I am.

Over the last few years, I noticed that I was having memory problems. The previous year has been troubling, and I began the long Dx road to today. I'm on a starter course of Aricept. I don't know if it's helping much, but I may need to remember (no pun intended). The side effects haven't been too harmful, but I regularly have muscle cramps in my lower legs. I live an active life and am engaged socially. Post-it notes are my best friend, and my refrigerator looks like a checkerboard.

Helpful suggestions are always great. Welcome to my new normal.

Iris L.

Welcome back, new normal. . You sound like you have things covered. I keep a notebook in order to check things off on my to do list.

Iris

klucey

I’m 60 and have dementia. I also developed what’s known as drooping head syndrome, which means I have trouble keeping my head up. Finally, I have spasms at night that keep me up most of the night. My mom is 87 and has it too. I recently had a car accident and can’t drive and live alone. I have to come up with rides. It’s hard being so dependent. While I’ve been coping with these symptoms for awhile, it’s just in the last few months that they got a lot worse—my dad died, mom went to a memory care facility and we sold my childhood home. I live 4 hours away from my mom, and with transportation and health problems it will be difficult to visit . I talk to her most nights. Mom gets frustrated because she can’t remember ; she’s well aware and says my brain doesn’t work. I talk about our Christmas’s growing up and that lifts her spirits. It’s still hard to talk to her. But Im glad we have the chance now. Ironically, Im not doing too much, so I don’t have much to say either. What Im really grappling with is that Im envious of the busy lives my friends have. Im angry that Im now in this category of illness. Technically it’s disability I guess but I feel illness is a better term. Im working hard to accept myself and let go of negative thoughts, and I distract myself with reading the news. Tv and seeing friends and doing errands. Thank you for letting me share. This board is a great comfort

Iris L.

Klucey, your life can still be fulfilling. Think about what you still can do. Is there senior or disabled transportation in your area? Can you sign up for it? Then you could get out if you wanted to.

Iris

klucey

I just connected with someone who provides rides. I’m going to find a volunteer activity to keep me busy

Iris L.

Great, Klucey! I'm sure there are several volunteer opportunities for you.

Iris

My new Normal

https://alzconnected.org/discussion/comment/176367#Comment_176367

Thank you. I am living it up. I bought a 32-foot motorhome off the assembly line. I'm leaving on a month-long cross county to see family and friends and knock out a few bucket list items.

Iris L.

Normal, what an exciting adventure! Are you going by yourself?

Iris

DIANELYNETTE

My heart goes out to you. Im caring for my mom; ES. I try to keep her busy. Shes big on Crossword puzzles. We listen to books instead of reading. I try to get her out of the house for fresh air and exercise. We try to enjoy the simple things. A funny movie every night helps her have pleasant dreams. Dont be hard on yourself. We all have good and bad days. Dont loose today because you are upset about yesterday. Start fresh each morning. I get my stregnth from the Bible. I like Bret Meador at AtheyCreek.com.

I try to crete small goals so we have something to look forward to.

Mom takes a mild anti-depressant. It truly helps. This site really helps. You are not alone

May I ask what are your interest? What do you like to do for fun?

Amy Joy

I have family history of dementia and I have dementia and can’t live alone anymore and I’m recommended to make plans for nursing home while I still can

Mimi50

https://alzconnected.org/discussion/comment/182366#Comment_182366

My husband is ES VD. He is doing fairly well but the struggle has been in trying to keep him active. A lot of the things you are doing with your mom. Would probably work well with my husband too. Especially A funny movie to watch. Maybe taking A walk too. The caregiver side of the forum has good information. The information on this side for people who have AD and dementia. Helps me to be more empathic to how my husband is feeling. When he is confused and struggling for words. He said to me recently that when he goes to say something. He can see the words and just is not able to reach them.

Mimi50

https://alzconnected.org/discussion/comment/176367#Comment_176367

Hi Iris my husband has been diagnosed year ago with ES VD. So he goes to the doctor next week. We live Illinois and the DVM requires medical form filled out and signed by doctor. So he knows that his driving will be over. I, started to have, pain behind my eyes and difficulty. Seeing the,steps in the dark outside my son's house. Went for routine eye exam and new,glasses. They want me to see specialist. They,think I might have, glaucoma. So there probably will be,restrictions on my driving too. So my husband and I may have to use disabled transportation. Our son does live close by and he can help too. Also my husband can do a lot still he does do small, stuff things around the house. He likes too cook also.

Mimi50

https://alzconnected.org/discussion/comment/184636#Comment_184636

Amy Joy did they give list of places for you to look at?? When my husband's mom couldn't live alone anymore. She was waitlisted for AL based on income. Had place she could afford and liked. They had bus service that would take them shopping and stuff. She stayed there until, she died in 2017. My husband and I need to move he would qualify for AL. But I won't because I don't have dementia and I am not 55 yet either. Trying to figure out away for the both of us to live together. Is not going to be easy.

2Hands

https://alzconnected.org/discussion/65513/im-back-but-this-time-im-the-one-with-dementia

Wow, I too am trying for a diagnosis. I have tags to find my keys, credit card, drivers lic. and use them at least once a day. I ask my phone constantly how to find places.

Her PCP was no help with my mom's Alz. So I hope care for MCI has improved in 25 years. My PCP is beginning to pay attention to my concerns. I had a CT last week. I'm single, live alone, no children. I'm taking Gerontology classes at the local JC in self-defence. Becuase I need to know and plan.

I wish this Ap had a better pell check. I was never good, but now I'm terrible.