Caregiver first, widow last

[cbelen48]

My husband was so ill for years with pulmonary fibrosis, a horrible disease.  The last 6 months I literally did everything for him, from helping him bathe and dress and get out of bed or off a chair or off the commode or into/out of the car, not to mention the endless trips to the doctor or ER or hospital.  I was so busy,    Now  I  find  myself alone and so lonely and so...well not busy. (I'm retired)  It's been a tough weekend.  Yesterday I gave his beloved Jeep to his son.  So many memories of good times in the Jeep.  The garage looks empty.  Tomorrow it will be 3 weeks since he passed and it is his birthday.  The tears won't stop. I don't know how I will get through tomorrow.  I had a nice birthday party planned.   I knew it would be his last birthday.  As much as I thought I was prepared and I know he is out of pain and there is no more struggling to breath, there is no way I was close to being prepared or ready.  

[agoyer · Accepted solution]

@cbelen48 I'm so so very sorry for your loss and for your pain. My heart is breaking for you just reading your post. I cannot take your pain away but I hope I can help ease it a bit. I can so empathize, having cared for my Dad who had Alzheimer's for 10 years and he just passed on 8 months ago. He lived with me and, like you, I cared for his every need the past few years of his life. I am sitting in our house right now, and it is so empty. Mornings are hardest for me because my mornings here were totally focused on getting things ready to get him out of bed (at the end it took two people) and showered, toilet, helping him eat and drink, cleaning everything up etc... as you say it takes your whole attention and energy. There is so much activity focused on our loved ones, and then with the blink of an eye it's all over. 

No matter how much I prepared (Dad was 94 and had advanced Alzheimers) it was still a shock when it happened. It may not be a surprise, but it is most definitely still a shock to our systems. 

I've likened my mind in grief it to a huge barge on the ocean turning around - it just can't move very quickly and takes a long time to turn around. Our brains take awhile to make this change - this turnaround - to grasp the fact that they are gone and everything is different. 

You're beginning the "year of firsts" so quickly with his birthday being today. I can imagine you are numb. And giving away his jeep - also a huge and concrete step solidifying your loss. All those memories...

Be gentle with yourself. There is no "right" way or timeline for grief. 

I cared for my sister, my Mom and my Dad - we lost my niece to suicide in 2012, my sister to Cushing's disease in 2013, my Mom in 2013 and my Dad 8 months ago. I am no stranger to grief. I can share with you some things that have helped me and others, perhaps they will help:

• Sometimes we just need to cry and feel sad - and that's ok. It's not wrong or bad. It's just emotion and love. Sometimes we just need to get it out (I had a big unexpected crying jag a few days ago when I went into my Dad's bedroom. It happens.) Allow the tears to flow when you need to. Sometimes it helps to set a period of time (i.e. I'm going to let myself feel really sad for the next 3 weeks, or the next hour etc.). 
• Make sleep a priority - I hope you're sleeping well. Your body needs to catch up on sleep and grief takes its' physical toll on us too. If you're having trouble sleeping you might talk with your doctor about it. You can also use aromatherapy (lavender helps me sleep!), prayer and meditation, a warm bath, natural sleep help like melatonin (check withe your doctor to make sure natural things are ok). I started listening to a "Deep Sleep" meditation app when my Mom died and I couldn't sleep. I still listen to it every night and fall right asleep (which I'd never done my whole life!) 
• The lack of activity - as you so well put it, the "not busy" time - magnifies the loss and the loneliness. When you are ready - and I stress "when" - you can find some things to fill your time up a bit. House and yard work, getting together with friends, volunteering, organizing cabinets and closets and drawers, sorting photos - anything that gives you a sense of accomplishment and keeps you busy. That time may not be now - but it could be - there is no set timeline. 
• Caring for yourself now is part of caring for him. You've been a caregiver for a long time, and you're good at focusing on others. I know you'd rather be focusing on your husband still  - I totally get that - and just plain miss him. Maybe you can take your caring skills and look at yourself as the person you are caring for now. Direct your energies that way for a bit. And remember, dealing with his estate is part of caring for him - you're still caring for him, seeing everything through. The love continues.
• Coming here! I'm so glad you reached out. Connecting with others who have suffered a loss is such a good support. When my loved ones first died I needed to talk about it - I needed to tell people about the details about those last few days - over and over. I still do sometimes. You can do that here! We are always here to listen. And over time, your experience will change and before you know it you'l be helping other people with grief.

What was your husband like? What was his personality? I'd love to hear some of your memories of him...

Sending you a huge hug, love and peace. I know it is a comfort to you that you were able to be there and care for him so lovingly - you gave it your all. Not everyone does that, so feel good about it. 

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling LIfe, Work and Caregiving and Color Your Way Content when Caring for a Loved One

[cbelen48]

Thank you for your very nice reply.  You did put a lot of things into perspective for me.  First of all, my husband.  He was a law  enforement officer for over 40 years, the majority of the time working with  a federal agency in drug enforcement.  He was undercover much of the time  and  in central America going after the big boys.  It was dangerous and he once he was shot in the back.  He has so many stories, many of which he never told anyone, but shared those secrets with me.  I was a police  officer with a large city department,  so we had  that in common and  totally trusted each other.  After retirement we loved exploring our state,  finding old  ghosttowns and abandoned ranches.  Most of the time we just stumbled upon them and we were thrilled.  It was so much fun.   

I felt so bad for him the last couple of years and especially  the last 6 months. He was a proud strong man who was humilated by how his body betrayed him.  He hated being helped to do the most personal things.  He was essentially housebound, teethered to an oxygen tank.  He was so embarassed every time I had to call the paramedics to help.  Help when he fell and was wedged between the bed and wall, help when he was stuck in the bathtub, help when he fell off the couch etc.  

I'm so glad I found this site because I feel like my friends and family are already losing interest in my sadness, so I have just kept most of it inside.  At times it's just too much and the tears flow.  Like today.  

I  have tried  to  have  a goal everyday, something to take care of, something to accomplish.  Some  people think it is too early, but I have been sorting through his things,  his dresser, closet,  desk etc. Finding all  kinds of treasures I didn't know he had.   I have never been a person to  let things hang over my head, I  just want to get it done.  

Unfortunately the day after he passed, I broke my foot 😞   I really really want  to get outside and  walk off  some of this.  But  I have to  wait a couple of more  weeks.  Luckily it is a minor  crack,  so  I should heal quick.

Which brings up the next point.  I have spent so much time caring for Jay, I have  neglected my own health.  So I am trying to focus  on what I need to do to stay healthy.  The hardest is eating right.  Good  thing I made a lot of  things ahead of time and froze them for those days I was too busy to cook for him.  I go to the grocery and can't even think of what to buy.  Like I am in a fog. I just stare and wonder what I should be buying.  The last  few days I have been sleeping better.  I was going to bed about  9:30  and waking up about 2.  The last couple of days I have slept until  5:30 or 6:00.   I'm exhausted.  

Then there is our poor dog.  He and Jay were best buddies.  He saw the paramedics take him out of here and  the next 10 days not only was dad not home, but  I was spending most of the day at the hospital.  Every time I come home he  looks behind me looking for dad.  He is so sad and I'm sure he feels my sadness too.  I feel so  sorry for him.  

As I said,  today is difficult.  His birthday came too soon.  So this is my day to remember and think about the good  times we had and grieve and cry.

Thanks again for your insight.  I really do appreciate it. I am very grateful for this site, and an opportunity to get it off my chest.

[agoyer]

@cbelen48 You husband Jay sounds like such an amazing person! The stories you have must be fascinating. And both of you in law enforcement - thank you both for your service. You put your lives on the line for all of the rest of us every day you worked and I, for one, am very appreciative! 

The worst part of caregiving is not doing the caregiving tasks, it's seeing our loved ones go through it. Understanding how they must feel at times. Your husband's distress must have been so hard for you to bear. I hope he had a good sense of humor and could laugh about some of the things too! My Mom was so good about that. She had a stroke when she was just 63 and she lived 25 years with Aphasia, chronic pain etc. She also fell and fractured her spine in two places but that's a whole other story! Anyway she was great at laughing when we didn't understand what she was trying to say, or when I was helping her in the bathroom (especially in an airplane bathroom!). She was a great role model for humor and grace. Daddy used to laugh when early Alzheimer's and his vision problems. Like when I forgot to give him his false teeth and we went to a baseball game - or when he was walking around with one lens missing from his glasses but he had no idea! 

What state do you live in? My parents lived in Arizona so I moved out there from Washington, DC 10 yrs ago (am in AZ now) and your story reminded me of how my parents drove around the state discovering places too - and old ghost towns! 

Oh my gosh - your dog! My Dad had a service dog, Mr. Jackson, who was his constant companion for 8 years (and my best friend too) and he died a year before Daddy did. In may ways it was best as I know he would have been so forlorn without Daddy. I can just picture your dog there, looking behind you for him to come in the door. Does he have an article of your husband's clothing to sleep with, carry around and snuggle? Maybe that would help him a bit? The dogs feel the sadness so much. When Mom died Mr. Jackson grieved just as much as the rest of us did. He was glued to Daddy's side. (see photo below). We all just comforted each other so I'm glad you have your dog to comfort you. Love on each other. 

When you say your family and friends are losing interest in your sadness, that breaks my heart. It's only been 3 weeks! I cried solid for the first two months! And it's been 8 months since my most recent loss and I am still not functioning "normal". (I just had a huge meltdown when I looked over at the chair where my Dad usually sat. It happens.) It is amazing, though how people expect us to get "back to normal" - especially after we've been caregiving. They think it's a relief. So many people just don't get it. Life will never be the same. That doesn't mean it can't be good - it will be and there will be joy in your life again I promise you that! But it will not be the same. 

Your foot! - you've really been through the wringer! Glad it will heal soon, as you say getting out and walking etc can help. I guess your body wants you to rest right now. You're so right on - time to care for you! People told me that alot right after Daddy died, and I just didn't care. But I have been grateful for the sleep and catching up on health things. So glad you are aware of that need. Glad you are sleeping better but still not enough sleep. I can imagine your exhaustion! 

So - today. Is there anything you can do that would acknowledge his birthday? Donate to some cause he loved, post on Facebook, read one of his favorite books, play his music (or maybe it's too soon for that?), buy his favorite flower, watch a movie he liked. Anything like that? I set up a scholarship fund at the locak children's theater where my parents were founders. Now I donate to that on their birthdays, Christmas and other times I miss them or wish they were here so I could do something for them. The other thing I've done that helps is I write a letter. Write him a letter about all you loved about him, wishing him happy birthday. It can be cathartic.  

Sending you a virtual box of kleenex 🙂 Keep us posted...

Take care,

Amy Goyer, AARP Family & Caregiving Expert

Author, Juggling Life, Work and Caregiving and

Color Your Way Content When Caring for Loved Ones

[cbelen48]

Guess what Amy?  I do live in Arizona.  We lived in the east valley but when I retired in 2010 we moved to the mountains in the Show Low area.  Jay LOVED it there but again his body betrayed him and 2 years ago was advised to move to a lower elevation or he would die within the year. So back down to the valley we came.  We are in the far southeast area now.  In a while we will be taking his ashes back to the mountains to a beautiful meadow he and I found once.  We returned to that place often and I am happy he will rest amoung the trees, looking over the meadow.  Let's see if I can attach a picture of the  meadow.  

Great idea about my dog.  I am going to go get his favorite sweatshirt and put it in his bed.  I bet that will  help.

You hit it right on the head.  So many people think I must be relieved not to have to care for him anymore.  They know how difficult it was and I'm sure they are not thinking about what they are saying.   

You saying that you look at the place your dad sat and breaking out in tears is spot on too.  I turn to say something to him and stare at  the blank spot.  Right now I can't watch any TV shows we enjoyed together  or listen to any music we both liked.  

I have posted on Facebook and get many responses and condolences.  A neighbor sent me a poem about the first birthday.  Very sweet and touching.  

I was amiss and not offering my condolences to your losses.  My mom is 94 and still very independent, living by herself and zipping around her community in her golf cart.  I know how very Blessed we all are  to have her with us.  I can't imagine when that day comes.

Enjoy the rain and cooler weather!  I'll be thinking about all you have  said.

[agoyer]

@cbelen48 Hi! Checking in to see how you are doing! I know it's a roller coaster of emotions sometimes. I'd love to get together with you sometime when I'm in Arizona! I'm traveling a lot right now but let's be in touch. 

That meadow is GORGEOUS! And so not like Phoenix 🙂  I can see why you'd want to be there all the time! 

The cool weather is past us now but it's still really beautiful - I love the Spring weather. How is your ankle? Can you get out and enjoy the good weather before it gets hot?!

How is your dog doing? Is he happier with the favorite sweatshirt to snuggle? 

Sending you a big virtual hug!!!

Take care,

Amy

[cbelen48]

Thank you so much for reaching out!  I too hope some day we can get together for a visit and lunch. 

I'm staying really busy so I have not had a lot of time to sit and cry 😞   Yesterday was 1 month.  I can hardly believe I haven't seen or talked to him in a month.  I'm afraid when I get done with all  this, and slow down, it will hit me hard.   

My sister's community is  having a community yard  sale  tommorrow so  I  have  spent  the last week cleaning out and  sorting and  pricing crap in  the garage.  If any men are reading this...do NOT leave this for your wife/SO to take care of.  I think I'm going to have to kick  him in the ass when I see him again for leaving  this for me to do.  LOL    I'm exhausted.  But at least I can sleep.  Small blessings.  

My ankle is good, I am out of the boot cast.  Yippeee.  We had a big storm last week but this week it is beautiful, in the mid 70's and blue skies, so yes I am enjoying that and opening the windows.  I try to find time everyday for my dog (Sly) and I to sit on the front porch and soak it all up before it's too hot  to go out.

Sly is getting better however I am taking him to the vet on Monday for a tune up.  I've had some recommendations of things to help him like CBD oil and Rescue Remedy and diffusers. Will see what Dr.  Andy says.  The hardest part will be telling him.  I'm okay until  I  have to say it out loud.

That about catches me up.  Sure appreciate hearing from you.   Big Hugs back to you....Connie

[fffred]

That is so sad. Such a sharp (harsh) change from before to now. I'm sure you grieved for your husband even before he passed (grieved for his disease and all). And now grieve for him and for your loss. My mom, a nurse, took care of my dad in the year he had cancer, until his death. I know it was very hard on her...combining both her professional care and her personal grief. Very hard for caretakers.

I hope you have close by trusted friends or family that you can just sit with and not feel alone.

My best wishes and condolences.