A Newcomer

Terry1980

Iris L.

Welcome, Terry. How are you doing? Can you tell us something about yourself?

Iris

Terry1980

I was diagnosed with EO last December. Prior to that I’d been seeing a neurologist for three years. I’m 61 years of age. Because of my illness I had to retire from teaching.

Iris L.

Hi, Terry! How are you doing? Are you making plans for yourself? Are you using memory medications?

I have a diagnosis of cognitive impairment not otherwise specified due to a combination of medical factors. Nevertheless, I have been using Exelon patch and memantine. I do not have Alzheimer's Disease, according to my PET scan.

Iris

klucey

So sorry to hear you had to retire from teaching. I struggle with how I’ve changed and what U can longer do. I try to find small things that take my mind off of my dementia, tv, reading the paper, reading long articles (ie the New Yorker, the Atlantic) puzzles, following through on certain tasks (financial, medical etc). What is helping the most is reaching out to people socially, and talking to my kids. This keeps me out of my head which is a relief. I have a therapist and because I have bipolar 2 a psychiatric nurse practitioner for medication mgt. Therapy is very helpful because I can discuss anything. For you, if you did therapy, you could spend your time processing the fact that you had to step down from teacher. . Another thing I do is write down my accomplishments each day (ie I called about new place, I cleaned the kitchen, I had a good conversation with Jane, etc). I hope some of my ideas are helpful to you as you adjust to your new life circumstances. You are not alone.

Terry1980

I look at what’s ahead of me, and I’m just hoping to die. I’m never want to be angry with my wife and to hurt her through words or action. I don’t want to be a financial burden to her either.

Iris L.

Welcome back, Terry. I will address your two points. You can't really tell what is ahead of you. I fell into a deep depression when I was told by the head geriatrician that I had to accept having depression, so I made some decisions. I decided thst if I had dementia, I was not going to be miserable.

I learned quite a lot from people who have been diagnosed with Alzheimer's Disease, also from my own relatives. What I learned is that much of the signs and symptoms are manageable. You do not have to become angry. PWDs do better in an environment that meets their needs. They need stability and consistency. They need little to no stress or anxiety. Often family members unknowingly keep their LO in a state of stress and anxiety by not meeting their needs for stability and consistency.

One goal of the caregiver is to keep her LO calm. Many do not understand that or do not agree with that goal. It is possible to use the early stage to learn about needs and solutions and new communication that will be beneficial to both PWD and caregiver. This may be difficult and require some committment anf effort, but it is doable.

As for financial needs, these too can be achieved. There are many strategies. The challenge is to learn what is best for your family as early as possible. Learn from the other members. There is much more I can tell you. Post back when you can.

Iris

klucey

Hi Terry,

I’m so glad you are reaching out here, sharing how lousy you feel, and being honest.

Keep reaching out. This is too much to bear without help. You sound very depressed with every reason to be. Having to leave your profession and having AZ is huge. I would call your neurologist next week and tell him what you posted here (ie wanting to die). He might prescribe you an antidepressant. You could also ask if he knows a therapist who you and your wife could see together; and/or individual sessions for you, if you’re up to it. Therapy can help you and your wife learn how to talk openly with each about worries, feelings and thoughts.

While you may not feel like it right now, try to do something that you enjoy every day with your wife and by yourself. Doing this will turn the dial down on your worries and depression, and give you and your wife time to enjoy each other.

I think Iris and I already mentioned calling the Alzheimer Association and talk to a counselor about your thoughts. Don’t hesitate to call 988 the suicide hotline. You can talk to a counselor there about what you’re feeling and your situation. If you start to feel like you will hurt yourself, go to the emergency room.

Getting help should improve how you feel, help you live in the present, spending good time with your wife. You’ll still have these thoughts and feelings, but you can learn to schedule a time to deal with them (with your therapist, talking to Az Ass, 988, walking outside, etc ) so they don’t overwhelm you.

I hope this helps. Keep us posted.

Terry1980

Thank you for your reply, klucy. I guess I left the wrong impression. I am not suicidal (way too Catholic for that 🤣). I just have no desire to do anything in the future that would prolong my life. I am depressed, and eventually I will see someone about it. My daily routine is to rise around 6:30 in the morning, get dressed, and go to Mass. After that, i walk my dog and, depending on the heat, shower. The rest of the day varies. Since I just retired in May, it hasn’t set in that I have no job. Because of the way the Teacher Retirement System is in Texas, I won’t actually know what my true retirement income will be until November. I have an approximate idea, but it is only an approximation. There are some other issues in my family concerning my son (who is in the military). I have not told him about my diagnosis yet.

Iris L.

Terry, yes, it is important to do something that you enjoy every day, as Klucey says. Depression is not permanent, it is treatable. Have you had a history of depression, or is this new? You need and deserve treatment!

Iris

Terry1980

I’ve dealt with depression in the past. I know it’s important to get some help.

Iris L.

Terry, if you have UNTREATED depression, it can present as dementia. This is called pseudodementia. I don't know by what processes you were diagnosed, but it is worth it to you to treat your depression aggressively before coming to a conclusion that you have dementia.

You need to be treated with an appropriate antidepressant in a therapeutic dosage. There are different classes of antidepressants. Some resistant depressions might require a combination of antidepressants. All antidepressants do not work immediately, but may take a few weeks, up to four to six weeks, to take effect. Thus, you will have to be patient.

At the same time you should be with a competent psychotherapist for talk therapy. I don't know if you have had blood tests to evaluate for low thyroid or vitamin B12 deficiency, which are also common subtle causes of depression in older adults.

If you are taking medications for other diseases or conditions, even over-the-counter meds, know that many cause memory loss or cognitive changes as side effects. You should work with your doctor to discontinue them and to find safer replacements.

I had a similar history. I had a history of depression, but I had no improvement in my memory or speech while on an antidepressant, but I did have a good response to the memory medications. Of course it is discouraging to receive a dementia diagnosis. But it is vital to rule out all possible treatable causes before coming to a conclusion.

You have some insecurity now because your pension income is unknown. Are you eligible for Social Security? You could look into that. I hope you can make steps to get things going. I know it is hard. Do one thing at a time.

Iris

klucey

Hi Terry,

Im glad you are not feeling suicidal. I was worried. Of course being catholic is a deterrent! When you say you don’t want to extend your life, what does that mean exactly for you? Also, you mention not telling your son yet. I wrestled with that, but recently told my two 20 something children. It helps that I don’t have to hide it anymore. I’m trying to figure out how much to share with them from here on out, and the kind of support they can provide.

Im heading out for a walk now.

Kate

Terry1980

Kate,

Just after i was diagnosed, i found out i had to have stints put in one of my coronary arteries. Had I been in my right mind, I wouldn’t have (that would have saved me a lot of money). I won’t do that again. I guess what I mean is that I will do nothing to extend my life.

We’re going to visit my son (out of state) and share the good news with him.

Iris,

I’ve been seeing a neurologist for over three years, now. In addition to decades of practice, he’s a professor at Rice University Medical School. I’ve been through many tests. Yes, there is depression (about which he knows), but there has also been demonstrable, significant decline in the ability to focus on and process information, short term memory, difficulty in forming and articulating thoughts, to follow conversations, tremors, and, occasionally, walking.

Iris L.

Terry, are you getting any type of treatment? What did you teach? I was a pediatrician.

Iris

Terry1980

I am on medication for depression. I’ll start seeing a counselor soon—after the school year starts. I taught English. For 15 of my years teaching, I taught AP English Language and Composition. I had a good career.

Terry1980

I tend to communicate better in written form than in speech, though those who don’t know me well often can’t tell (aside from the tremors) there’s anything wrong. However, spend a little time with me, and it can become more apparent. I’m at my best in the mornings or after naps. I used to love reading philosophy and classical rhetoric. Now I have to read texts that used to be easy for me over and over to understand/remember them. Fun times.

klucey

Hi Terry,

Im finding the same thing — my written communication is better, although my speech is still pretty good. And, in general people don’t notice much difference. My kids however have noticed I’ve been different for some time. Today I’m feeling pretty bummed out, in part because I don’t have a plan for the future. Financing is a real problem. If that were in place, I’d feel a lot better. Hopefully going to get some financial advice soon.

Kate

Terry1980

I’m thankful my wife and I have dependable retirements. If the cost of living at least levels off and medical bills are kept to a minimum, we’ll be okay. I still worry a lot about money though. Like you, I’ve no direction for the future either (which is disquieting).

Iris L.

Terry and Kate, one of our emeritus members gave me good advice. She said to get our affairs (legal and financial) in order, then go live our lives. I have to admit that I took her advice in reverse order. I lived my life thoroughly, now I am working on getting my legal affairs in order. I delayed because I do not have a natural caregiver to become POA. My finances are pretty set.

Another emeritus member, Mimi S, was the subject of a PBS program about living with Alzheimer's Disease. She encouraged us not to focus on what we no longer can do, but to focus on what we can still do. In the beginning I tried to learn about memory loss by attending whatever classes and lectures that I could find. I read books about Alzheimer's Disease and books written by people with Alzheimer's Disease. Three of our members here have written books about their own experiences.

I attended other classes for seniors, especially computer and technology classes, so that I could keep up with changing technology. I volunteered to tutor reading to adult illiterate people and also tutor ESL to non-English speaking people. I traveled overseas to many countries. I went on an Alzheimer's cruise. I attended a Memory Club. I also spent a lot of time communicating with members on these boards. I also rescued animals. My life has been busy.

I would encourage you, while you are in early stages, to think about what is important in your life now and do it. Do you have a bucket list? Following Best Practices can help you function better and may help prolong the early stages.

Iris