Accepting That I Am On This Path Alone

Jinx Darling

I have (finally) come to an acceptance that there is no longer any accountability or depth of understanding with my DH, he still has a surface persona, ask questions, tells me he loves me, remembers or obsessive over some things, showboats at the Dr.s or in front of family and friends but the many fractures to his memory are glaring back at me. 

DH has finally accepted he is not getting better. He is admitting for the first time he cannot remembered our lives together (40 years ) or how to do things. (this has been an angry struggle for him) 

For me, it’s almost like the veil has been lifted, the curtain pulled back and it makes giving DH the love, care and patience that DH needs a little bit easier.

Accepting that I am on this path alone, that the hard choices are now in my hands. That I have no partner to discuss and consult with. 

The worries and weights of all decisions fall on my shoulders. I am alone yet living with my DH. 

I am accepting the need for and learning to let go of the guilt that comes with the lies of omission, lies of necessity, of excluding DH from decisions/discussions, and waiting till the last moment to let DH know of a Drs appointment or another activity’s that will stress him out.

Still learning to accept the hard road that is in front of me and the choices that are still to come but I am trying to live in the NOW and deal with what’s in front of me and I will worry about the future when we get there. At least that’s what I keep telling myself. 

Therapy has helped me reach this place, otherwise I would probably be crouched in the fetal piston in my closet crying. I have CRIED a lot in the last year. DEPRESSION is real! Therapy helps! This Forum helps! 

RobertsBrown

Hey Jinx.

Perfectly said, and I am with you 100%

I am really happy to see that you are honestly facing this thing.  That was a huge step for me, and I think the point where sanity started to return.

Every word rings true.

michiganpat

Hi Jinx, You have said it perfectly. I look at my DH and I know it is him but yet he is not the one I married. He has all the signs of FTD. His primary doctor knows and did the mini test in her office which he did pretty well on. Memory is not his problem. Behavior and thinking are. She wanted to test further but he refuses. He showtimes just fine but get him alone and he is another person. Someone, actually several, have said only with acceptance will you get peace. I am happy for you (the acceptance part). I am working on it.

M1

Agree Jinx, this is beautifully written and heartfelt.  thank you.

Jeff86

JD, thanks for your post.  You are on the right road…this is an incredibly hard journey, but less rugged with acceptance.   And with fellow travelers on this forum.

jennieblackburn

“like the veil has been lifted, the curtain pulled back and it makes giving DH the love, care and patience that DH needs a little bit easier.” This just happened for me. I’m awake to the fact that he’s gotten a lot worse & I haven’t seen it.  It was something his neurologist said. I think she was trying to tell me that he has maybe 2 more years at home. I’m kicking myself for having blinders on. 

“Accepting that I am on this path alone, that the hard choices are now in my hands. That I have no partner to discuss and consult with.  The worries and weights of all decisions fall on my shoulders.” This is 109% me. We’re in business together & I should’ve realized I’ve been doing this alone for at least a year. I’m lucky we still have any business at all. 

 He has always been the leader, the boss. He always took care of me/us. Now I have to grow up

I'm being crushed by this. Inside. Mentally, spiritually. 

I am calling all the kids to let them know what’s going on and that I’m going to need help but I don’t know what that’s going to look like. Three down, four to go!

Beachfan

Jinx,

I found your post a refreshing read. I note that you use the word “acceptance” five times. I have long held onto the notion that acceptance is one of the first steps that caregivers for those with Alzheimer’s need to espouse.   Acceptance doesn’t mean surrendering, giving in, giving up, or buckling under. For me it just means facing each situation as it arises, dealing with it, moving on, and not looking to the future for trouble. (Some of the trouble you worry about may never find you.) Hope for the best, prepare for the worst, one day at a time, one foot in front of the other, and rely on the great people on this forum for advice and empathy. Stay strong; you are not alone.  

Just Bill

I had the realization pretty early after my wife's diagnoses that we were both stuck on a tiny boat in a huge ocean. Once that realization set in my brain went into that type of thinking. We are both alone and there are no helicopters, ships or people on shore waiting for us. Some days are calm and following seas. Some days are 100 foot waves and we get beat up. Just day to day existence in the boat. Prepare for the future but handle what is in front of you right now.

Kibbee

Beachfan - your words about acceptance are spot on.  My mother was the Queen of Pragmatic And Not Feeling Sorry for Yourself.  As kids we learned that to complain about being bored, or whine about how life wasn't fair, usually resulted in Mom handing us a mop, broom or dust cloth and telling us to "get busy and you'll stop feeling sorry for yourself".  (You could say that in Mom's world it was mop, not mope!)  At the time it drove us a little nuts, but now I thank my Mom every day for that early training in developing self reliance and a realistic approach to life's challenges.

And Just Bill - I love your analogy to being with your partner on a tiny boat in a huge ocean.  Sums it up perfectly.  Here we are, just the two of us, and the Coast Guard will not be coming along any time soon.  Luckily today the waves are calm!  Guess we better smile as best we can and keep on paddling.

ghphotog

Well said, I'm slowly coming to the place of acceptance. I'm accepting that I'm in this alone, without any help from family. Just my good friends that I'm grateful for who try to help with house cleaning and meals from time to time but mostly provide empathetic ears and prayers.
I've resented my family and my wife's family for offering absolutely no help the last few years. I feel alone and abandoned, save for my friends. Acceptance might help me to forgive and be more understanding towards family.
As I've mentioned before I'm also taking care of my elderly mother as well as my DW who is deep into it now.
When you think about the 5 stages of grief that apply acceptance is the last stage and maybe the last stop. I need to quit feeling sorry for myself, accept where I'm at in life and just get 'er done. I've been doing that though the best I can over the last 4-5 years, except the feeling sorry for myself, getting over that is next. Getting tired though.

What kind of therapist are you seeing if you don't mind me asking as I have needed therapy for a long time in order to help cope? Just not sure I trust therapist with my deep dark secrets but I'm going to also check with my doctor for a recommendation.

My therapy the last few years has been to stay numb but not so much I can't deliver. I've never missed a beat in caring for both of them. At least I feel I haven't but that could be debatable from someone looking in with fresh eyes. 
I've made a lot of mistakes but it's a learn as you go endeavor.
Maybe once I accept "acceptance" I won't be fighting this internally as much. I want to be free again and my dream is to be able to travel and play a lot of golf, have mucho time to myself when this is over but accepting that I may still be a caregiver for a long time is not easy. 

PookieBlue

Hi Jinx,

You are spot on with the “acceptance “. That seems to be a major step in this process. It frees us up to move forward. Your experiences are parallel to many of ours. It has been a long grieving process for me as my medical background exposed me to the hopelessness that comes along with this disease at a very early stage of my DH’s decline and change in personality. It is chronically overwhelming but I still can count on some small daily blessings to help get me by. Thank you for sharing.

saltom

This topic is just what I need today.  I was all set to go grocery shopping and to my book group when I got a call that the care giver couldn't make it.  DH cannot be left alone, and I am feeling extremely sorry for myself.  DH also can't get into and out of the car by himself, let alone walk the grocery store aisles so taking him out is not an option.  Guess the only option is "acceptance" and make it a concrete rather than abstract concept.  He also wants to go to the hospital so the doctor can remove whatever is causing his memory and speech issues.  This I find incredibly hard to deal with emotionally. At times he tries so hard to help and at at times he truly tries my patience.  Again thank you all who give your wisdom and experience to this forum.

Janco

Jinx:

Acceptance is super hard and I am working towards it.  Along with acceptance of the situation, we also have to remember that we are people with needs as well. Try to retain some laughter and activity in your life, as hard as they may be.

Janco

Scooterr

Jinx

 Very well put, acceptance is a hard hill to get over. Like you, I done a lot of crying mixed in  with depression. Once I made it over the hill and accepted the disease for what it is and what it's going to do, things started falling in place. They may not fall where I expect them to, but I'm about to handle the situation with control and reserve. I know my life now with acceptance is a LOT BETTER, and even better my DW quality of life has greatly improved (more good days).

 Wishing you the best Jinx, and I know it takes a lot of work, but your doing good! Stay the course.   

toolbeltexpert

Jd your covering all of the bases that help you stay upright. Wrapping your self in acceptance of all of the changes. That is a major part of taking care of business, for you both. 

And welcome to the forum.

And to all of the new posters it's good to hear from all of you, we all need each other.

Stewart

Jinx Darling

KathyF1

Hi Jinx, I completely understand everything you are feeling. I’m right where you are. The rare times when friends still come around are a lifesaver for me. It’s SO hard being so isolated with a person with Alzheimer’s. My DH is delusional, shadows me all the time, talks almost constantly- behaviors that drive me a little crazy. I struggle with patience all the time. And pray God gives me the strength to complete this journey. Thinking about the future is scary, I try to just take one day at a time. Glad you’re finding this forum helpful! I too am grateful to be connected to others going through the same thing.

Jgirl57

Jinx D, my acceptance came after my HWD had the lumbar

Puncture, cerebral spinal fluid test and the results were: Pathology consistent with 

Alzheimer’s. It was the info I needed to begin to take the lead for everyday living( car

Repairs, paying bills ) and reducing stress and triggers. This forum has helped me to move forward.