I sit and read all the posts at about 6am as wife not up.Diagnosed 1yr ago mild Alzheimer I never really read a happy post , yes short term going and confused alittle my question is is it normal to feel that maybe she’ll stay just like this??
It’s totally normal charley to wish for stability, that things remain as they are. Particularly early stage.
Of course, reality is the AD is a progressive and ultimately fatal disease. But there are stretched of time, sometimes long stretches of time, where progression stalls or advances almost imperceptibly. My DW remained in late stage 6 for at least a couple of years, before progressing again to stage 7.
I hope for you and your DW that she hangs in at this stage for a long time.
Your post resonated with me. I think DH’s functioning may not get worse which makes planning more difficult. My DH with ALZ has MCI but functions very well most of the time. But then he will say or do something that is “off the wall” and I feel shocked. I then wonder if that demonstrates decline or just a momentary glitch in his memory or reasoning? My research indicates that not everyone with ALZ goes through all the stages. It is so confusing when most of what I read on support forums is just the opposite!
Just hard to get my head around this girl I know over 54 yrs ran business for years now asks me “what you think” with most decisions on anything from what to have to drink to what should I wear at times. but do notice when out to dinner will order what her friend will order, ordered a beer other nite 54 yrs married never saw her drink a beer. Some illness !!
I think there are a number of factors at play here.
Firstly, it is the nature of most support groups whether online or IRL to be populated by individuals who need support whether that means venting, seeking solutions or just being validated by others who understand. When things are going well, they tend not visit the site. There are likely people out there who have a parent or spouse with dementia who are so well supported by friends or family they don't need to be here.
I have a friend whose widowed mom is in the early stages in a senior apartment with the 5 local siblings overseeing the day-to-day and emergencies as they arise. Each brings strengths-- my friend is a paralegal who found a great CELA years ago, sister is a nurse practitioner in internal medicine who understands the medical stuff, another owns a restaurant and has food delivered, etc. It's working well now, but I have a sense my friend doesn't fully appreciate the gravity of the situation because her mom is in her early 90s. Another friend, again with a mom in her 90s, had a team of family and friends who provided emotional support and enough money to throw at caregivers to carve out a piece of normalcy to allow her to work part-time and have a regular date with her DH when he was in town on weekends.
I feel like the other piece to this is that dementia is such a dire diagnosis that it can be hard to wrap one's mind around your future while in the earlier stages when life seems pretty much as it always did. Some people would consider this denial but I feel like it's more nuanced than that. For spouses and adult children who see a PWD daily, the changes can be so gradual as to be imperceptible. Think of the frog in the pot of warm water set to boil who doesn't realize he's about to be cooked alive. That was my mother.
It took me the better part of a decade and a full-on psychotic episode to get her to agree to have dad evaluated. I saw my dad about 2-4 times a year in the early and early middle stages of dementia before he was diagnosed, and I saw all manner of mood and behavior changes followed a few years later by obvious memory loss and confabulation that mom ascribed to the aging process.
If you wife and your life together is stable and happy that's wonderful. I think everyone here would join me in hoping this remains your reality for a long time. My aunt never lost her sweet and engaging personality. Even her delusions and hallucinations were lovely. When she went into MC, she thought she was living in the married student housing at Rutgers just after the war when her husband was in grad school.
HB
It's long and slow. To be honest when my wife was in the early stages I actually liked her more. She was jovial, happy go lucky and nice to be around. She was always so serious about everything, never laughed at my sense of humor and frowned most times if I had a a beer or two. She needed me and trusted me with everything. I knew in the back of my mind though what it was all about but thought she easy to care for and this might not be as hard as I thought it would be. She still retains a lot of that, still thinks I'm funny but now there is so much more going on with this disease and it's difficult but I still love her.
Stage 3 MCI ( mild cognitive decline) lasts an average of two to seven years. Stage 4( mild dementia) lasts an average of two years. Average means that some people progress quicker and some progress slower. My mom started having issues of confusion and anxiety in 2018. They were out of state so all I noticed was that on phone calls. In Sept 2019 she had Urosepsis and seemed to need a nursing home. Once treated, she eventually got back to what the doctor diagnosed as an MCI level. Seems more like mild dementia to me.She sounds a lot like your wife She’s been at that level now for 4 years. Some days a little worse, but firmly in our reality.
So, yes, your wife could stay like she is for quite some time yet. No one knows. This is still a good place for you here. Lots of us have loved ones still at the early stage. We still need to vent because this stage can be frustrating.
I'm in exactly the same place. My DW is doing very well but I fear what I cannot predict. I pray that our loves stay where they are for as long as can be. It seems like a monster in the closet and I'm having a difficult time focusing on the good we have right now because of my fear of what is in the future. I love her so much I cannot yet come to grips with her fading from me. I am personally seeking out some counsel to help me, I am hopeful the counseling will help me center. I'm sorry that I am no help to you but I'm guessing that there are several of us with the same prayers and questions.
If it's Alzheimer's, then the decline is more gradual, so enjoy every moment you have while you can! Plan for the future, but take things one day at a time.
My DH stayed pretty much ok for 6 great years. It’s mostly been the past 6-8 months that it’s noticeable to both of us his short term memory is fading and his comprehension skills. Most days we still laugh and he has a quick wit. He gets more depressed than he used to and focuses on negative things too much. I watched his mother go through this. I’m hoping once again that he doesn’t progress quickly through this stage either. I will cross whatever bridge comes my way when we get there.
JScott,
Your comment, “I fear what I cannot predict” struck a chord with me. One of the struggles posted as my first post here was about moving to be near our daughter now while my DH is high functioning. I fear being away from family because I fear I cannot care for him alone, if things worsen. I fear moving because I fear we both may not adjust to leaving the only city we have ever lived in. Fear has become my very unwelcomed visitor since his diagnosis in April.
This is the time to do your bucket list. Do the things you have talked about doing. No one can predict the future of anything so as song says “live like you are dying “ . Enjoy every minute you both have, tomorrow will be here before you know it. Sending prayers for each of you.
Charley0419 It's normal for you to wish she would stay that way as it's your brain trying to cope with the diagnosis and is a form of denial as protection for you. Hope that makes sense. I felt the same way 2 years ago when my DH was diagnosed with Dementia-probably vascular. Recently they changed it to Alzheimer's-Posterior Cortical Atrophy a rare form. They can't do an MRI so they didn't know for sure until I sent them a list of his behaviors. 2 years later he's Stage 5. Everyone progresses differently. Once I talked to the doctors and reality hit, I decided I would learn everything I could about the disease and about how I could best care for him and help him. I try to focus on today. That's not always easy. Each day is different. Some days he's easy going and other days he's very agitated. It's an emotional roller coaster. Read the book "The 36 Hour Day" if you haven't. It helped me a lot understand the disease and tips on how to care for him. As he progressed, I started keeping a list of his behaviors and I send them to his doctors once a month or so. They spend so little time with him they can't know what Stage he's in. The list helps me communicate with them.
Charley, All the suggestions are good ones. Each case is different but the important part is to get your finances in order now and see a CELA lawyer re: your investments etc. If you are able to, do whatever is on your bucket lists as you really don't know her rate of progression with this disease. Be sure to get your wills updated and do not have her as your power of attorney. Knowledge is power and read as much as you can re: this disease and of course come to this site as it is a real comfort and can give you alot of support and info.
My wife in denial, no driving anymore short term and confused a lot but everything else fine
I think it's totally normal. And, so is all of our sadness. That said, my DW is in Stage 4 and we still have a lot of laughs, love, and good times together. I try to live in those moments while they happen and to not get too down when I see the other side, which is her progression. Tough, tough balance to maintain.
Charley. It is likely that your wife is not in denial but has anosognosia like most PWD. Her broken brain is UNABLE to recognize the changes she has undergone due to the disease. This is why most PWD insist they are fine and will fight assistance with everything they have.
My dh has been stabilized by meds for a long time now and the changes/declines have been generally subtle. It's been very slow progression for him after the first several tumultuous years it took to get to diagnosis. Once I got accustomed to the "new normal" (took me a long time to get over the shock and to adapt to our new and strange life), things have "settled" out, controlled by meds, and his decline is subtle and slow.
Due to the above and to my ability to adapt, it's easy to "pretend" he's sort of okay. A skilled counselor familiar with dementias and the effects on family dynamics has been very helpful for me over the past year. She has been a reality check I didn't realize I needed. It feels like I'm just beginning to finally get an inkling of true acceptance that ... I am a caregiver. I think my brain goes into a sort of conscious denial just to cope with the enormity of the impact of dementia on our lives together.
This was my long answer to your question just to say, Yes, it's normal to feel what you expressed. You captured it well in just a few words. Thank you for raising the topic.
I’m getting much better dealing with her as I don’t correct things she says we have done or places we’ve been. Hard at first but understand not same person
Thank you for explaining the time it takes to come to grips with reality and see yourself as a caregiver. Some parts of our day feel normal, like having a cup of coffee in the morning or walking with our dogs, and dementia can temporarily seem like it is not real. My brain does that conscious denial thing for a minute until I remember and shift back to our current reality. There is such a roller coaster of emotions for me; my DH of 45 years was diagnosed last November - a year ago - and though there was relief in knowing what was causing the behaviors, that shift from partner to caregiver is seismic.
So many great comments here. Early on when DH was still very functional and the memory issues weren't as paralyzing, we took some nice trips and made some new memories. Looking back I wish we had done more of that before the decline I've really noticed in the last year or so. Now I hesitate and stress out about any traveling, but still trying to do it. Take advantage of those early years like there's no tomorrow! You'll be glad you did, even if your LO may not remember it later. One day at a time, find some joy in the little moments.
