Small mercies

GTPremium

I'm grateful -- really grateful for the small mercies that are features of the stage we're at now.

It sounds absolutely terrible to express it this way -- to say it out loud -- but I'm grateful that being with my wife, diagnosed with dementia and moderate Alz early this year, is not the daily, hourly horror it was even a few months ago. And it's not yet the awful struggle it will be as she slips, inevitably, toward being unable to handle the conventional activities of daily living. To calibrate: my guess is that she's somewhere around stage 5 to stage 6 on this scale: https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

Here's what I'm thankful for right now:

= That her devastating belligerence and caustic behavior (toward other family members and some friends, not just me) now seem to be largely behind us.

= That she's not demanding to drive -- or even asking where the car keys have gone.

= That she seems to be sleeping more.

= That she's relatively easy to distract.

= That I have a wide range of other interests and other pursuits (including running the business that my wife and I founded and she was a large part of until a couple of years ago) to engage me and give me purpose outside of caregiving.

= That I've gotten over my guilt and concern about "therapeutic fibbing." Mostly!

= That we (my wife and I) have many friends and family who have truly rallied round and stepped up with outstanding levels of help.

= That the Alzheimer's Association is such an incredible resource -- 10 miles wide and 5 miles deep.

= That I'm now getting help from a care management agency who are taking such a burden off of my shoulders.

There's much more to be thankful for, but you get the idea. Gratitude can give us some of the strength we caregivers will most certainly need to deal with the next stages of the disease.

Joe C.

I have always tried to find something to be grateful for on this journey as a way to keep my sanity. DW is in early Stage 7 and living in MC.

My gratitude list these days include:

• DW is well cared for and safe
• DW is still mobile, still likes music and can still dance
• It is relatively easy to get her to laugh
• The support/relationship I have from family members especially my stepdaughter

Ed1937

"It sounds absolutely terrible to express it this way -- to say it out loud " It might sound bad to those who don't know what caregivers really go through. But on this forum and some other very special places, it doesn't sound terrible at all. There are times when progression becomes your friend, even though none of us look forward to that.

I lost my wife almost 14 months ago, and I have always been grateful that she did not have to see this disease to the end. Even in my most depressed times, I still felt that way even though tears were running down my cheeks.

Joydean

It’s not horrible or terrible to not want our loved ones to go through more pain. We are in late stage 6 and going into 7 and every day I pray if it’s God’s will to take him before he gets worse. It’s the hardest thing I have ever done, but it’s because I love him so much.

GTPremium

I wish I could still say that my care for my wife is borne of love, but my true confession is that I feel I had all the love squeezed out of me years ago by the vitriol and caustic comments and arguments that went far, far beyond "toilet seat up or toilet seat down" kinds of petty marital stuff.

Yes, I now realize -- as do others in the family -- that the early, unseen years of Alzheimer's are to blame for much of her belligerence and attack-dog behavior. But I've come to realize that's been only part of it. The truth is, my wife has carried all sorts of emotional baggage that should have been sorted with therapy decades ago. Her sister recently told me that before I came along (40 years married now!) others in the family -- including my wife's mother and her sister -- were frequent targets of her razor-sharp tongue and her anger and sarcasm. Although my wife had many friends, she also had many -- particularly those close to her -- who gave her some space.

Don't get me wrong: we did marry for all the right reasons, and we have had two absolutely wonderful sons, now in their 30s, and I believe I did truly love my wife for decades for all of the reasons that led me to propose all those years ago. But things change; people change. Weirdly, at age 69, I'm really enjoying all aspects of my life outside of marriage -- the volunteering, the business my wife and I founded 21 years ago, and much more.

So... what exactly is love? It's the romantic ideal of love, certainly, and it can persist long beyond the fluttery, jumpy honeymoon years. It did with me. But those days are long gone. Today, for me, love is simply duty -- my obligation to my wedding vows, to doing the right thing, to caring for a poor soul in such evident distress, as much as I can, with the support of the wonderful agencies I've hired.

Denise1847

Hi GTPremium,

That is a tough place to be in but I do understand. We have been married for 50 years and grew apart awhile ago, but still have had a "good enough" relationship to stay together. I think love is compassion, forgiveness and caring for another when there is no reciprocal caring possible. For me, it is commitment.

I cannot imagine being the brunt of verbal attacks all those years and then having to care for the person who has hurt you. I hope somehow you will find peace in this situation.

When we first learned my DH's diagnosis, I was very angry at him. I thought it was his fault because he is very stubborn and didn't take care of himself, including not using a CPAP for apnea. It took me awhile to realize that I was projecting my anger of the situation on to him and that had he known what would happen, he would have done anything to change it.

ButterflyWings

GTP - small mercies is a real understatement. The things you've listed sound HUGE from here. Good for you.

I try to exist in a space of gratitude which is my nature but also very necessary to survive this hand that we've been dealt. So, I am grateful for that habit. But am not as good at stopping to intentionally focus on the specifics. And as Joe C said, that action of counting your blessings, naming them one by one is powerful. Thank you both for sharing your gratitude lists today.

Beautiful reminder that dementia (or other isms or illnesses) does not have to take both people down with it.

ThisLife

Hi GTPremium,

I am in the same situation for different reasons. Married 47 yrs. H was just someone who did not want to participate in the difficult work of marriage and parenting 12 yrs. into marriage. Tried counseling for the next five years. Promises but no follow through. I continued on with family life and career. There wasn't any reason to divorce as we each had our own lives. Ten yrs. ago H was diagnosed with AD. In my case it is duty and a gift to my living son. (I cared for three Grandparents over the years.) I had the foresight to obtain LTC for my H as his dad had dementia. I will place my H in MC next month as he cannot be left alone. I will not be sentenced to the house walking on eggshells with an angry, agitated person with anosognosia. At 69 I hope to begin rebuilding my life.

GTPremium

Congrats for your positive, forward-looking attitude, @ThisLife. I'm loving this bold, brave, affirming statement: "I will not be sentenced to the house walking on eggshells with an angry, agitated person with anosognosia. At 69 I hope to begin rebuilding my life."

Go for it. You have dealt with more -- way more -- than enough.

cewt

Duty and obligation sum it up for me. While I never had to experience destructive behaviors, there is no relationship left in which to share love. So, out of the love we did share I continue out of duty and obligation. I too pray that when the time comes my dh goes easily.