Needing support from my online "friends" who walk a similar journey.

RetiredTeacher

I'm strong most of the time but feeling very vulnerable tonight. MCI diagnosis after neuro/psych testing many yrs ago. 2 strokes and 2 vascular surgeries later dr says likely VD. DH refuses further testing or medical evaluation. He's done. Don't blame him, its been a lot of tests that ruled out lots of things. He wants no more medical intervention and just wants to be left alone to live whatever life he has left. I get it. From his perspective why endure more stress, testing, evaluation when the end result is the same?

So how as a loving spouse and caregiver do I give up trying to make it better? I KNOW I CANT CHANGE THE ULTIMATE OUTCOME AND I DO NOT WANT TO EXTEND THE TIME HE HAS TO SUFFER FROM THIS DREADED DISEASE?? I figure he's late stage 5 going in to 6. I still struggle with my own inner demons that want a neurologist or geriatric psych evaluation to get additional info on stage of disease. I'm not looking for meds or trying to slow disease. This is TERRIBLE and no caring spouse wants their loved one to have to suffer longer than necessary. I guess I just needed to vent and hear a supportive voice. Anybody out there in a similar situation??? Just rolling along....

CindyBum

Similar situation here. 3 years and 2 MCI diagnosis, then just last March a diagnosis of unspecified dementia in Stage 4 or 5. My DW is currently in Stage 5 now, for sure. She didn't want anymore testing to find out the type of dementia and I agreed with her.

I read Tam Cummings DBAT sometimes obsessively to determine what stage she's in. Have you seen it before? Perhaps that could help you at least understand a bit better.

I can't name one single thing that's good about this disease and have hated every stage, every change, every indignity with the power of 1000 suns. Utterly heartbreaking and manifestly unfair to our LOs.

xoxo

Goodlife2025

Retired Teacher, sending you a big hug and understanding connection as a fellow traveler also care taking for LO at stage 5. I have had to trade the thoughts about medical interventions and nailing down exactly where we are on each determination/staging scale for more thoughts about how to make today the best it can be and what parts of our old life are still possible. There is some relief in letting go of the things not under our control and focusing on the small things we can control. Someone on here once mentioned stage 4 can be the hardest for the PWD and stage 5 the hardest for the caretaker.

RetiredTeacher

Ty Both so very much. I really needed the support today. I am usually so very strong and I really don't think more testing would serve any meaningful purpose. I am trying to capitalize on what I can control and making more memories. Going to take a short RV trip locally for 3 nights before Easter. Hoping for the best but realize it never goes as planned. Expectations are very low. Just want to make more memories.

cdgbdr

Bless you as you move through this. You deserve the venting. Somehow, you have to turn your focus to his comfort and quality of life. Maybe a palliative care consult would be beneficial. This is tough and you are strong! Best of luck with your short trip. I hope it brings you both some joy.

Biggles

Same here my DH with VD doesn’t want any more Dr’s I weep I cry I do. We have other family issues and I wonder how much more can I cope with.

RetiredTeacher

Biggles,

We are all doing the best we can to deal with this horrible disease. If there was a finite end time or anything we could do to change it, it might be easier to cope with. Some days are definitely harder than others. Hang in there and be good to yourself.

SDianeL

so sorry about his diagnosis. We know exactly how you feel. You are correct that more testing won’t change the outcome and it would only add to his anxiety. Doctors don’t like to talk about stages because everyone progresses differently based on many factors and depending on what part of the brain is affected. I searched online for stages of dementia and found many charts. I found one that listed behaviors within each stage. I found it both scary and helpful to know what might come next. Remember that behaviors can overlap stages. I kept a list of my DH’s behaviors in case I needed to communicate with doctors. It also helped to communicate with his daughter who lived out of state. She wanted to be informed. I did not let my DH see the list. It would have upset him and he would have denied the behaviors. Sending hugs. 💜

Carl46

The serenity prayer goes something like this: God grant me the courage to change the things I can, the patience to endure the things I cannot change, and the wisdom to know the difference.

I'm trying to find some serenity. I hope all of you can too.

Jgirl57

Enjoy your RV trip. I no longer rely on the doctors for information about the stages. I just review Tam Cummings DBAT tool . Our primary care doctor and neurologist did say they could add medications if behaviors warrant. I think what we are sometimes looking for is hard proof that there a problem and we are not just imagining it. I spent many useless hours second guessing myself

ImMaggieMae

There are always a lot of questions in these forums about stages of dementia. I think early or mild, moderate and late or severe are a more helpful way of looking at it. If you look at a chart or list of the 7 stages of dementia, there is so much crossover and so many things that never occur for some patients, and then other, atypical symptoms that occur with others that are rare or at least uncommon. To me, the only important thing about stages is the types of treatment that is appropriate at that particular level. And most of the common medications, (which are few) are used across most of the stages. More often drugs that are used are drugs for other illnesses that are used off label. Everyone is different and what works for one may not work for another. Often, it’s trial and error. Tests that wouldn’t make a difference in treatment or possible outcome are a waste of time and stress.

The important thing to me is a doctor and usually a NP that is willling to spend the time working with the caregiver and patient, to find what works and is open to suggestions when something isn’t working. In our case it was first a hospital psychiatrist/pharmacist who treated my husband when things started to get really difficult, and his neurologist when we were finally able to get into one. Each of those doctors spent close to an hour with me on the phone explaining medications and tests. Both used the expression “boots on the ground” to describe caregivers and their input for treatments.

Although my husband is in a later stage, I don’t know that he is suffering other than difficulties with walking and probably similar aches and pains that I have from spending too much time sitting and lack of exercise. I don’t think he feels the indignities of incontinence or needing help with ADL’s because he has me here to help with those things and both he and I accept it as part of our daily routine. I am incredibly sad that our golden years have headed in this direction, but it is what it is. I love him just the same or maybe even more now because of the unfairness of all of this happening to him. I want him to continue living as long as possible and as long as he isn’t in pain that can’t be controlled. We’re all terminal, we’re all going to die. At the point he is at now, somewhere around stage late 6 or early 7, his world has certainly gotten smaller, but I think there is a contentment in his daily routine and his occasional smiles or laughs show that. I guess my world has gotten smaller too, but there is a fulfillment that comes with caregiving, knowing how important your care is to the person you love.

Mint

I enjoy the serenity prayer also .

harshedbuzz

@RetiredTeacher

I am so sorry things are progressing for your DH.

Mine might be an unpopular opinion, but you are the expert regarding which stage your DH is currently in. Doctors can look at paper tests, imagining and interview him in-office where he'll do his best to showtime whereas you live the day to day as his partner on this awful journey.

Any of the charts that describe stages can help you interpret what you're seeing and what might, or might not, be next. I like the Tam Cummings DBAT as well. It's especially good in the middle and early late stages for making safety decisions given the age equivalencies.

The other piece is that doctors use a 3-stage model of dementia— mild, moderate, severe— which provide a framework for medical treatment rather than daily living.

HB

Denise1847

https://alzconnected.org/discussion/72642/needing-support-from-my-online-friends-who-walk-a-similar-journey

Good Morning,

From my experience with loss, it has been my coping strategy to educate myself about the disease and sort of obsesses about it, looking for things to help the situation. Looking back, for me it has been an attempt to fix or control the experience of loss. It is probably part of the denial and bargaining process in the grief cycle. I have been amazing at how accurate the cycle of anticipatory grief is. You think you are moving forward and then you slide back into certain stages.

Be kind and gentle with yourself about this. You are on a long journey and can learn alot about yourself and others by self-examination and observation. You can grow from this.

You are fortunate in that your DH grasps his illness. My DH does not. He is in MC, thinks I just stuck him there and that he can do everything. He is miserable and gets sulks when I come.

trottingalong

https://alzconnected.org/discussion/comment/239433#Comment_239433

I agree with you.

Maru

Retired Teacher. Oh, the guilt! Am I doing enough? Should we try that new medication that MIGHT give DH more "normal" time? The pressure is from every source imaginable: hiss siblings (it's normal), the kids and grands (have you considered trying xxx), from the librarian as I pick up The 36 Hour Day, again, even from my p astor. I think i consider myself lucky in that as soon as DH got the diagnonis of ALZ, he and I discussed every possible scenario where medical intervention might be needed. His executive functioning was borderline normal at that time. He didn't want anything done that would extend his life. Having just gone through Covid together, I am well aware that if it comes to a DNR, that is going to be a tough call.

You are the only one who knows what you should do. If it makes you feel better to try all the various meds, then do it. We did, but he had an allergic reaction to all of them, but at least that is one thing I won't have to feel guilty about. Love your spouse the best way you know how. For me, it is in the caretaking without complaint. I am very sorry that you are here but this is a safe place to "spout" off. The world may not hear you scream, but everyone here does and understands…sadly. Find your peace whre your can. I keep my Bible opened to Psalm 18, which reminds me that I am not alone.