Support and Help

adsMukWA

Good Morning!

First time poster here, who is looking for some support.

DH was diagnosed with Mild Cogitive Impairment at the age of 39. He is now 43. He has a neurologist, regular therapist, and neuropsychologist who provide support for him.

At this time, he is still able to work and the condition doesn't seem to have a detrimental impact on HIS day to day life.

However, I am struggling. We have two young children (7 and 10) and because of his lack of short term memory, much of the mental load falls to me. We have tried a shared "to do" list, physical lists in various places in the house, etc. If he has a consistent task or chore that he does, then it is usually completed (example: he does the dishes nightly and cleans up the kitchen). If it is something I ask him to do, he will often say, "I'll take care of that," and it doesn't get done without many reminders.

This has taken a toll on me. I work full time, though I am lucky to have a relatively flexible schedule. I have noticed that he checks out a lot (goes into the zone, doesn't listen, etc) and that affects productivity as well.

We are really lucky that we have open communication and we have a good relationship. I feel like I can talk to him about my frustrations, but at the end of the day, it doesn't change the fact that sometimes his condition makes it impossible for things to improve.

As I mentioned, he has a lot of support and is proactively seeking ways to work on his memory problems.

I am here because I need to know that I am not alone and to find some support for myself. This experience is very isolating and overwhelming at times.

We are located in Western WA. Do you know of any support groups (virtual or in person) that deal with early onset?

I appreciate you reading this and am looking forward to connecting with some of you!

mrahope

Welcome to the group. I'm sure you will get many wiser replies than mine, but I just wanted you to know that it's OK to vent here, and nothing is particularly off limits in terms of subject matter. I am so sorry you are having to deal with memory issues in a person so young, and with young children as well.

SSHarkey

Hello, and welcome to this forum. Stick with us and you will find a lot of great information as well as support! We all totally understand the frustration of working full time and having a spouse who doesn’t do what was promised. Unfortunately, in all of our situations, the primary reason isn’t lack of interest or avoidance. They honestly just don’t remember. That part of the brain is broken. So if we continue with the same patterns of communication and behaviors, we will continue to get no results. This terrible disease has thrown a huge wrench in our lives and our relationships. To avoid feeling like he is ignoring you or doesn’t care, use single task requests for the current moment. For example, “R, can you come help me for a second?” Or “will you please take —- to the garage?”
I’ve discovered my DH simply can’t hold onto more than one task request at a time. He needs one direction at a time. Multiple step requests are from another lifetime. And even then he will forget. So I kindly ask him again as if I hadn’t done it before. The more he helps me, the more empowered he feels, no matter how small the task.

MelissaNH

Welcome and hugs to you. I'm so glad you have support and that your husband is able to communicate and try to work on the deficits he is experiencing. My husband (56) has anosognosia (FTD/Pick's) so he flew under the radar during those years and still does not believe anything is wrong. We also have two children, but they are now young adults. Going undiagnosed for this long has created a lot of mental trauma and financial ruin. It has been extremely isolating and overwhelming. You are not alone and I'm so glad you found this group. I just joined last week and everyone has been so supportive and helpful. I hope you will find the same and if you ever want a friend to talk to, please feel free to send me a DM. Our husband's diagnosis and symptoms may be different, but that loneliness and overwhelm is very much shared. As far as local support groups, what I did was reach out to our neuropsych and social worker in the practice and asked them for resources. Just yesterday, in fact! They gave me several to look into and now I have groups to check out going forward. I'm sorry we are all here, but I'm so glad you found us.

sandwichone123

Particularly with his young age, I suggest you get a durable power of attorney that is not "springing." That is, some DPOAs require that professionals certify that your dh meets capacity requirements before you can use the DPOA. I've seen many cases of professionals refusing to do that because of age bias. If you get a DPOA with no such requirement, life can be much smoother. Always remember, too, that using a POA is not shameful, and that celebrities and business people use them all the time to allow others to take care of their interests while they're busy. We can also take care of our loved ones' interests without shame or embarrassment.

housefinch

Does he have a medical diagnosis as a cause for his MCI? I would consider looking for a support organization, too, that exists specifically for that diagnosis, if one has been found. MCI at 39 is uncommon.

adsMukWA

https://alzconnected.org/discussion/comment/207792#Comment_207792

Thank you so much for your sweet words. It helps to know that I'm not alone.

adsMukWA

https://alzconnected.org/discussion/comment/208129#Comment_208129

He's been assessed by a few people and they don't have a specific diagnosis but think that it is due to CTE. Unfortunately that can't be confirmed unless he is desceased. His situation is very uncommon and he has seen quite a few doctors who are trying to figure out the cause of all this. I will look for a support organization for MCI. Thank you.

adsMukWA

https://alzconnected.org/discussion/comment/208122#Comment_208122

I definitely will do this. DH is an attorney, so we have been talking about this. Thank you for your support!

adsMukWA

https://alzconnected.org/discussion/comment/208081#Comment_208081

I will definitely reach out to his neuro and neropsych! Good idea. We just moved to this area so still trying to figure out best resources. I'd love to connect as well. I'll send you a DM.

adsMukWA

https://alzconnected.org/discussion/comment/208073#Comment_208073

This is great advice. I'm discovering that it really is a re-framing of the situation to try to be understanding of what he is going through. Ultimately, it helps with our relationship and lessens the amount of frustration and resentment on my part.