Trying to stay positive

Welcome to the Forum. I am sorry that you have had to join us. Please try not to be so hard on yourself. This is the most difficult experience most of us have ever had. We all lose our patience, get tired, get angry and depressed. You are not alone. You are among friends who understand so lean on us as we journey together.

God bless.

I’m 67 and DH 79. Most days I’m pretty patient. My DH is still mobile, dresses and bathes himself fine. He’s isolating himself more and relies solely on me. He’s very aware of his short term memory problems, he’s clingy. I’ve noticed he’s fixating on things more and more, which usually causes me more stress and work. We live in a remote area with very few to no resources. Like you and everyone else on this journey, I am losing my best friend and confidante more and more as each day passes. Every morning I get up first, make the coffee and read this forum. It just helps me feel less alone.

Welcome to the forum. This is one of the very best places to find real information from those who are ‘living in the trenches’. It’s very difficult caring for a loved one with dementia. Besides having all of our dreams of the future shattered, we are responsible for our loved one and good doctors who actually understand dementia are few and far between. It takes forever to get appointments with specialists, often 8 months or more and sometimes those appointments are painfully short. When something like a UTI comes up, which can seem devastating to a person with dementia, it seems to always happen on a Friday when doctors don’t seem to work anymore and you’re stuck with 3+ hour waits in ER or urgent care.

i think one of the most difficult things is that our loved one looks the same up until maybe the late stages, but they act very differently. It’s easy to think that they’re being uncooperative even when they aren’t really, they’re just very confused. And if we are their primary caregiver, we’re confused too. Everyone with the disease seems to act differently. There are a lot of coping mechanisms out there, but some work for some people and not for others. It’s trial and error and what works one day may not work the next. There are some good medications out there that help with symptoms (not a cure) but what works one month may not work the next. Or it may need to be increased. Or additional medications added. It’s maddening, even with good doctors. And medications don’t work for everyone.

I try to be positive, at least in view of my DH. His emotions definitely seem to mirror mine. I’m lucky that he is mostly cooperative, not aggressive or mean. But when he is agitated he’s in constant motion, standing up, sitting down, moving from one area to another and has to be followed because he is a falling risk. I can’t really teach him anything, nor can anyone else, because his memory span is often minutes. Inside I often feel terrified. He sleeps well with medications, but I usually am up part of the night just worrying about how to keep him content, worrying about how to pay for everything connected with the condition when we’ll need more in-home help. There’s also dealing with the isolation which seems to go along with this disease.

We do the best we can. I love my husband dearly, even the changed man who needs lots of help with everything these days, is mostly incontinent, needs help in the shower and with eating and dressing. He’s still him. I do sometimes lose patience and feel horrible when I do. The only saving grace is that he’s forgotten the things I said 5 minutes later. I wondered a couple years ago how I would make it through this journey. But we’re still here. In some ways it has become easier, some harder. I try to live for today even though It’s difficult. My main job is taking care of this man and doing everything I can to protect him and make him feel safe.