Do Caregivers End up with PTSD?

Bill_2001

I was just looking at our (my) Christmas tree and realized that this will be my eighth Christmas caring for my wife with dementia. It has been over seven years since she has given me a Christmas card (or gift). It seems longer when stated in terms of “number of Christmases.”

I sometimes wonder if I will have some sort of disorder after (or if) this period comes to an end. There are so many things that I no longer identify with and have no desire for anymore. It seems that caregiving for seven-plus years, with no break, is re-wiring my own brain.

For instance, I notice other women and wonder if I would marry again (no). When people offer their thoughts and prayers for me now (rather than coming over to help), it takes a major effort to hold back an eye roll.

I have slowly been purging things around the house, (a) for the purpose of simplifying my life as a caregiver, (b) for her safety, (c) to be more prepared for “after caregiving,” and (d) for grieving purposes, as it is too painful to keep some items that she will never use again. I have found lots and lots of things and items that seem like someone else’s past now, rather than ours. The pain accumulates, but really has nowhere to go. I cannot envision myself accumulating things again with any purpose; it feels like the “discovery and excitement” part of my life is gone forever. It is very difficult to put this into words.

For example, I have gradually been giving away/purging/dumping her quilting supplies. She will never quilt again, as she cannot count to five, and I would never let her near scissors. Considering the future, I would never buy a single quilting item, no matter who I am with or what I am doing. This is Done, forever.

We have “his and her” Trek bicycles. I rode mine once this summer, alone, while she was in daycare. I brought it home and parked it next to her bike, which is covered with dust and has two flat tires. Her bike has not been used for seven years. I washed it and filled the tires, and took it for a short ride. I parked it next to mine, and grieved a little.

It seems to be that nothing will ever be the same again, as my dear wife touched every part of my life. Assuming PTSD may be somewhat drastic, but what do you call it when every part of your life hurts now? And for so long?

And yet, my dear wife, somewhere in Stage 6, sits here beside me, safe and warm, prolonging my suffering. She is blissfully unaware of it. 

ghphotog

Bill, I'm sure there will some sort of "recovery" time if you will. Call it PTSD or just burnout but it will take some time to recover and find yourself again.
I've been deep into it about 3 years but wife started showing problems about 5-6 years ago.
I can't imagine having another five years to go. I would probably have some sort PTSD I'm sure. I've thought about therapy for myself but not sure who to go to.
It's all I can do now to keep going day in and day out. That's a long time to do to be a caregiver in that capacity!
If I ever met another woman I don't think I would ever, ever marry again just because this disease you just can't predict and I could not go through this a second time or put someone through it.

Just Bill

It has profoundly effected my thought process too. People will ask what are going to do for fillintheblank holiday ? I just say I don't think about anything that far out. I get to the end of the day and celebrate that. Then I get up in the morning and celebrate that. Lather, rinse, repeat. I meditate, exercise, take care of my wife and dog, do everything she used to do, work , golf once in a while, and nap when I can. Relaxation by exhaustion. I haven't thought much about what is next. I just get to the next day. When this is over and she passes I will deal with that then but not now. Being in the moment almost to a fault is how I am changed. Enjoy the good moments and get through the bad moments and really enjoying the silent moments. Yeah I'll probably be a mess when this is over.

JoseyWales

I'm wondering the same thing - how will I be when this is finally over. DH has been in memory care 9 months, and I can honestly say the very worst is over, but it's still not over. I'm exhausted, yet I can't stop yet and grieve what's lost. Because he's still there. I just can't decorate for Christmas, and I used to love to put up lights. This year I've managed to get out the fake tree, but 1/2 the pre-lit lights are not working. So there the tree sits, with no decorations and 1/2 the lights. 

It's worse because my DS is here with me, and I know I should decorate for him. But I just can't. 

I still have DHs stuff all over the house, like he'll come back and be angry at me for getting rid of his stuff. 

PTSD. Probably. 

Scooterr

  Bill, I don't think you can really categorize or put a name on  what we're going through. We watch are LO slowly dissipate in front of us. For us it's agonizing, horrible, miserable, it's a living hell and the list goes on. It's combination of so many things it's hard to put it in it's place. Even after our LO is gone will we ever be normal again? For me I know I'll never be the same and maybe you could call it PTSD, but somehow it maybe deeper than PTSD. 

  You mention how "your wife has touched every part of you life." This includes heart and soul once your LO has touched that inner self it's forever. For me going through what we're all going through I'm damaged goods after this journey is over. I just feel fortunate to have her right now even though our world and life is slowly being forgotten about.

Judi57

Bill,  I'm not sure what to call it either.  But most of the time, I just feel numb and alone.  I used to cry a lot.  I used to stress over a lot.   After five years, it just seems like I'm always waiting for the next problem to arise, to hopefully figure out a solution, and move on.  And alone because no one in my or his family understand.  I can talk to him, but he just nods yes or shakes his head no, if I'm lucky.  Sometimes it is just a silent stare.  

We have been grieving for so long...for a loved one who has been dying slowly.  And this is different, because with some other terminal diseases, the person remains.  With us, we end up married to someone different, a shell of who he/she once was.  The personality changes, looks change, abilities change, empathy disappears, and we still remain.  It is traumatic in the sense of the definition...emotionally stressful.  

I, too, have been getting rid of things.  I've given away his clothes and his hobby items.  It seems so much easier now than when he passes.  I belong to a Facebook group called "Buy Nothing."  These groups are nationwide.  I'm helping others as donating is helping me.  

May we all whether in the beginning, middle, or at the end stage of caring for our loved ones find peace and I especially hope that I find myself again.

  

Crushed

After 7 years of 24/7/365 care taking my doctor insisted on placement to protect my health

that was 5 years ago.

I don't have PTSD or depression 

I am just perpetually discouraged

  
 

DJnAZ

Thanks, again, for another thoughtful and powerfully written post, Bill_2001.

While I don't know if I am depressed or may suffer PTSD if and when this is over, I tend to agree with Crushed...I am perpetually discouraged.

CaringMate

Bill...PTSD is a very real diagnosis for many caregivers of dementia patients.
I was diagnosed with this condition in the final year of my 10 year journey with my
partner and his neurologist feared more for my life than he did for his patient.  I lived in
constant fear that I was going to be attacked or worse as the disease of FTD progressed
which we have come to learn is a very angry and aggressive form of dementia.  That I
survived physically was a miracle, but it has left me mentally changed and challenged.
It has been four years since his passing, but I still have flashbacks regarding so much of what took place that I doubt it will ever leave me.  As we have all come to learn, each dementia patient is different and so are the caregivers and how they react and absorb the secondary consequences of this disease.  My advice has always been to take each day as it comes and do the best you can with that day.  Do not compare your situation to any other and do not think about what the future will bring...for each of us it is different.  Know that for now you are doing God's work and while others are able to turn their back and speak platitudes, you have chosen to do what is needed and you honor your wife with every task you take on.  She is blessed to have you!

Elaine

Buggsroo

My house is full of his ghosts. He is still here but he isn’t. I am trying to get him placed for both our sakes. 

My husband had a number of hobbies; antique clocks, none work anymore, cacti and green houses, all dead, books on fat plants or cacti, baking, renovating. I have every tool in christiandom but no idea how to use them. The clock books are my idea of the cure for insomnia, baking nah, the microwave is pressed into daily service. In other words, I am dismantling his life while he is still living.

I have cried and no doubt will continue to do so. I am donating everything to charity. I realize this life I am leading will be on my own. PTSD absolutely. I know I do not want to remarry, I am terrified of going through this again. I am less trusting, more wary and really tired. Yes this may change, but this is my reality now.

As for Christmas, a holiday I loved, I don’t bother. Just another day and frankly relieved when it’s over. I will order some Thai food, mix myself a stiffie and watch some Christmas movie. I miss my family, the excellent dinners etc. All a thing of the past.

Joydean

I hope caregivers don’t end up with PTSD.  As Army Vet said it can be treated, but it also can keep coming back! My dh was treated for PTSD and was doing great. Then the brain injury and then Alzheimer’s. Now the PTSD is back big time. Short term memory is none existent, the only time period that is strong with him is Viet Nam!  When this time is over I don’t want to just have memories of all the struggles, or just remember watching him fade away year after year.  I want to remember the good times, the times we were happy and could laugh and have fun together. No PTSD please!

ghphotog

Buggs

You have expressed in words what is happening with so many of us. It resonated with me and I saw myself in your words doing and seeing the same things. I cook the same things almost every morning, the rest is either eating out and making sure we have enough left over for dinner so I don't have to deal with it. I've donated so many of my wife's things to Goodwill and she never raised an eyebrow. She doesn't recognize the house or anything in it. 

As far as Christmas is concerned, its just another stress I don't need. I haven't even put up a small artificial tree yet as she doesn't know what season it is.

If I make it through to the other side of this it will take a while to decompress from years of stress and worry. The woman I married is long gone and is never coming back but I still care for her as she drifts further and further away. I wish I could reach out and save her but I can't. I wish I could grab her by the arms and tell her to snap out of it. All I can do is hold her now, tell her I love her, console her when she is afraid and crying, she won't remember any of it. She will never know what I've done for her and how I took care of her the best I could. That I didn't run from her when I first saw this coming. 

jfkoc

Don't know about PTSD but forever changed.....

White Crane

 Bill, your post hit home with me. It hit me right in the heart. I understand what you mean about rolling your eyes when people offer thoughts and prayers instead of coming over to help. You spoke of purging things that she will never use again. I’m sitting here at my computer and looking at over 75 birding books that he will never use again. My husband was an excellent birdwatcher. He could identify practically any bird and people sought him out for bird identification help. Now he barely knows a sparrow. Sometimes I wish it was over. Then I look at him and know that I love him. I would be so lonely without him. And I’m lonely with him. I don’t have a name for it, but I know that I am forever changed. If I survive this, I would never want anyone else. I’ve been on this road for six or seven years now and it’s all been uphill.  He is somewhere around mid to late stage five and we still enjoy moments of laughter and tell each other I love you. I am grateful for that.  God bless you Bill.

Brenda 

David J

Bill-  I wonder about PTSD also. My Maria’s struggle is over, but I am left with all the physical reminders and memories. I sit and do nothing way too much, but doing things by myself feels wrong and painful. People try to be kind and sympathetic, but it only reminds me of my loss. I think we all suffer trauma as we care for our LOs, but after our LOs pass, there is still trauma. Is this phase PTSD?  I really don’t know, but it is not a positive experience. This may not answer your question, but the last 15 years have changed me and I think damaged me. I don’t want another emotional involvement, because I fear dementia, either in myself or in anyone close to me. I don’t want to be a caregiver again and I don’t want to put anyone through what I’ve been through. 

David