Just Sharing

Crkddy · February 24

It's been about 4 months since I've been on this forum. With the start of our 9th year since ALZ diagnosis, I just felt like I needed to share. I apologize for rambling. I recognize that everyone's journey is unique, so you may be able to relate or you may not. But I'm sure, as caregivers for your loved ones, you appreciate this forum and the opportunity it provides to reach out and hear from others in similar situations.

My wife is 63 years old now. Her doctor estimates she is stage 7c. Her journey has been a roller coaster…. marked by ups and downs for us both. Her progression was rapid over the first several years, and she has been non-verbal, incontinent, and unable to do anything for herself the past several years. Now she seems to be on an even keel (other than sleep.) Although she can't feed herself, she still has a good appetite. Though she is wobbly, she can walk with assistance. Her sleep pattern is constantly changing. She might go a couple of weeks and sleep mostly all day and night. Then she'll go awhile and not sleep much at all. Despite this, her demeanor is generally pleasant. She does get agitated. I'm used to it and would call it minor now. She has a prescription for Ativan, but I haven't given her any in a year. I just hug her and tell her it is ok. She responds and relaxes most times.

Other than the ALZ, she is in good health. Her only meds are memantine, donepezil, Zoloft, and Keppra (for seizures she suffered about 2 years ago.) I have read and been told that the memantine and donepezil may not be doing much for her any longer, but I've also read that you should continue as long as possible. I tried on two occasions to wean her off, but both times I noticed immediate downward changes in her behavior. So I just stick with it. She can't swallow pills any longer, so I crush them and mix them with apple sauce.

She is still at home with me. I tried her in Memory Care a year ago. We had a horrific experience with that, and I brought her home after a short stay. I have used in-home private pay caregivers on several occasions, and most have been wonderful. But as is the nature of that business, the two good ones we had both moved on to greener pastures. Despite that, they were a blessing.

In June of 2024, my wife had an especially difficult time. She was hospitalized and (I thought) near death. She was not eating, was sleeping all the time, and very frail. Seizures sent her to the ER, and it turned out she had a severe UTI. She did not wake up for four days in the hospital. But her condition improved, I learned from my mistakes, and I vowed to be a better caregiver. Part of that vow was to take care of myself. To make a long story shorter, I met someone on-line, looking for companionship. It developed into much more, and now we are living together, along with my wife. I've shared this story in a previous post and was overwhelmed by the support and non-judgement from this forum. I bring it up again just to say it saved my sanity and made me a much better caregiver for my wife.

I don't know what the future holds, but I know I'm not in control. My wife's journey seems to be far from over. I try to plan but recognize that God just smiles when I do that. I had a very difficult time with my faith after my wife's diagnosis. It is still difficult…..how could this be God's will? But I am thankful for the opportunity given me to care for my wife, and I am thankful for a second chance at a loving relationship.

One thing is for sure. This journey is life altering for the patient and the caregiver. But I'm preaching to the choir. Blessings to you all.

persevere · February 24

Hang in there crkddy. You’re doing everything right.

Gator1976 · February 24

Bless you for your dedication. I am 14 months in, my wife is stage 4, sometimes 5. It depends on the day. I have hired a caregiver for 3 days a week. It’s been a blessing although, I am now a supervisor of another.
thank you for your post.