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May Thoughts from a Caregiver...

Posted by @IndianaScott, May 3, 2017

So here we are in May. In our family we have much to celebrate, yet this year much to mourn.

I am thankful our wonderful lead hospice nurse warned me in advance of the fact grief does not follow any preset path, nor does everyone follow the so called ‘steps of grieving’ so many books and articles tout. If she hadn’t, I have no doubt I’d be even more depressed than I am now. Grief has taken me up, down, sideways, and a bit too frequently, caddywhompus. I owe our nurse a ton of thanks for the many aspects of her wisdom — and caring!

But now, back to May.

Our two children both have their birthdays this month. My wife and I struggled mightily to get pregnant. Then when it looked like both our children would have the same birth date (albeit three years apart) my best half fought like a banshee with her obstetrician to put off her C-section for four days just so they would each have their own birthday! So as you can imagine it’s hard to have these days coming with her not being a part of them for the first time ever. Plus this year one is a milestone birthday with our eldest turning the big 4-0.

Then right after those days we get to experience our first Mother’s Day with our children being without their mom. I lost my mother years ago, but this year, whenever I see one of the omnipresent TV advertisements for Mother’s Day I turn into a weeping sap!

So it is I find myself more at sixes and sevens than I have been since her passing.

I know full well, in my head, I should simply focus on the celebratory aspects of this month. Spring has arrived (even if it is only 41o here right now). I will be lucky to celebrate our son’s birthday with him, our daughter-in-law, and our grandsons. I will then scurry home to do some laundry and make a quick turnaround to head to our daughter’s for her birthday.

Gifts have been bought, wrapped, and cards written. Extra care has been taken to be certain they will not be alone on their birthdays nor on Mother’s Day. I work hard to think happy and keep busy. But grief comes from the heart, not the head.

When one has been a fulltime caregiver for their spouse for the preceding many years, there is a hole in your soul that just sits there, gaping like the maw of some insatiable beast. No matter what you try and fill it with, the void remains. In my life I have had several jobs and I was always careful to define myself as the person I was and not by the job I had. But that all changed with being a caregiver. Caregiving becomes ingrained in you, changes your internal structures somehow, and, and we each know, is not simply a job. Every caregiver senses how it alters you in more ways than others can ever begin to imagine or comprehend. So while our patient may be gone from our lives, the caregiving-altered aspects of our very being remain changed within us.

I have arrived at the belief my grief is simply a new dimension of my love for my wife. One did not end when the other began. One did not take the place of the other. Rather like my favorite sandwich, peanut butter and jelly, they simply were made to be mushed together. After all, once you slap those two sides together it is too messy to ever try to separate them! So you accept the combo as one of the more peculiar aspects of life. So it will be with me this May. Joy and grief comingling. Besides, not everyone thinks of a PB and J as fine dining, but I do. Just as I now find my grief as the very definition of the love I still hold for the best half of me that is now missing.

After all my wife’s favorite saying was “Forever My Love” and as usual she knew exactly what she was talking about!

Peace and strength to caregivers everywhere.

REPLY

Scott – thank you so much for sharing your thoughts. You are an amazing husband, father and caregiver. I wish you the same peace and strength that you provide to others so well.

God Bless…

@IndianaScott Yes, thanks again for sharing your heart! Teresa

@IndianaScott, Thank you for sharing your thoughts and feelings. It helped me to deal with the loss of my Tom. We always told each other I will love forever and ever and you are so right, the love goes on and on – as does the pain. It’s only been 2 ½ weeks but I feel like he has been gone forever. I don’t want to talk to anyone or see anyone and I know that is not good. My friends keep calling and inviting me to dinner and I always back out at the last minute because I can’t handle small talk yet. In fact, I can’t handle any kind of talk yet. I start with grief counseling on Monday – was supposed to start today but just couldn’t make it out of the house. I admire you for going on with your family. My only child lives 3000 miles from me and once she left to go home, the hard facts of life really hit me. You are/have been an inspiration for me since i started with this group. I wish you good health, and in the middle of all this grief, some happiness.

@tntredhead

@IndianaScott, Thank you for sharing your thoughts and feelings. It helped me to deal with the loss of my Tom. We always told each other I will love forever and ever and you are so right, the love goes on and on – as does the pain. It’s only been 2 ½ weeks but I feel like he has been gone forever. I don’t want to talk to anyone or see anyone and I know that is not good. My friends keep calling and inviting me to dinner and I always back out at the last minute because I can’t handle small talk yet. In fact, I can’t handle any kind of talk yet. I start with grief counseling on Monday – was supposed to start today but just couldn’t make it out of the house. I admire you for going on with your family. My only child lives 3000 miles from me and once she left to go home, the hard facts of life really hit me. You are/have been an inspiration for me since i started with this group. I wish you good health, and in the middle of all this grief, some happiness.

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Hi @tntredhead Good to hear from you. My thoughts are with you each and every hour of every day, even if from afar! I hear you on the ‘small talk’ front! Even at this point there are just a few folks I am comfortable with socially and far more who I am not yet. That may change…we shall see! I say give yourself time.

What I realized, which helped me to venture out, was I had two people I definitely needed to thank for their support during my wife’s years of sickness. These two in particular went over and above in their support. One for my wife and one for me. I felt in my heart, no matter how difficult the visits would be, I had to get to them to say my thanks. Emotional for sure, but I also told myself I was doing it in part because if I didn’t say those ‘thank you’s’ my wife would have been really, really, REALLY mad with me 🙂

Slowly I have been able to add a few folks to this circle, but totally at my own pace. Grief is as individualized as your love — so follow your heart I might suggest.

Be strong and know many are sending positive energy your way!

Peace and strength!

@tntredhead

@IndianaScott, Thank you for sharing your thoughts and feelings. It helped me to deal with the loss of my Tom. We always told each other I will love forever and ever and you are so right, the love goes on and on – as does the pain. It’s only been 2 ½ weeks but I feel like he has been gone forever. I don’t want to talk to anyone or see anyone and I know that is not good. My friends keep calling and inviting me to dinner and I always back out at the last minute because I can’t handle small talk yet. In fact, I can’t handle any kind of talk yet. I start with grief counseling on Monday – was supposed to start today but just couldn’t make it out of the house. I admire you for going on with your family. My only child lives 3000 miles from me and once she left to go home, the hard facts of life really hit me. You are/have been an inspiration for me since i started with this group. I wish you good health, and in the middle of all this grief, some happiness.

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@tntredhead Thank you for your post. I have been thinking about you. Keep sharing with us as you are able! Teresa

@tntredhead As we approach Memorial Day weekend my thoughts are with you. Do you have plans for this holiday weekend? As you are comfortable doing so, please feel free to share with us how you are doing. Best wishes to you and your family. Teresa

Heading 2 hours away to my son and family. My sister loves to go there and we lay the baby on the couch next to her with one of us on the other side. She never tries to lift him to carry him etc. it works great and she tells people how cute he is and that he likes her. The baby just lays there but the 2 year old grandson loves to crawl up next to her and show her things. She is just one of the family and everyone gladly makes the appropriate allowances for her. It’s a day off for me , smile!

@hopeful33250

@tntredhead As we approach Memorial Day weekend my thoughts are with you. Do you have plans for this holiday weekend? As you are comfortable doing so, please feel free to share with us how you are doing. Best wishes to you and your family. Teresa

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Teresa,The only plans I have are to take flowers to Tom tomorrow and then go back again on Monday to visit with him again.  These last two days have been extremely difficult – the one month mark – and today I feel like I just can't go on but I know I will.    Had a really bad experience last night when a nephew that I never see – he lives about 3000 miles from us – called and proceeded to tell me that I should have kept Tom home.  He said some pretty nasty things until I hung up on him.  Of course, when my daughter called and I was crying, she called him and gave him orders to never call me again.  Even though he doesn't know anything about the circumstances or my health, it hurt so deeply to hear him judge me so harshly.  So today I just can't stop crying.  I miss Tom so very much and even though he wasn't home, I was with him every day for many hours.  Sorry to cry on your shoulder too.  Hope Memorial Day is good for you.Trish

The Redhead

This thread is me the last week. 8 days ago we took my husband of 62 years to the Senior Behavioral Health Unit at the local hospital for evaluation. We had spent two sleepless nights with him, and he was seeing people who were not there and insisted every reflection in the windows was a person staring at him. We are waiting for placement in a Care Center as I just can’t take care of him at home anymore. This has been the hardest thing I’ve every had to do. Tears come easily as I visit with church friends, neighbors and families. The hardest thing was his accusing me that I was trying to get rid of him every time I went to visit. Last night was much better. Maybe the new meds they have started are beginning to work. I will find out more tonight.

I surely know how hard it is to put your best friend, lover, companion in a Care Center. I have been there and my heart hurts for you. I am not going to tell you that it will get bettter as I don’t think it does. Just savor every minute you have with him and don’t argue when he sees someone/something or gets angry with you, His mood will most likely change quickly and then you will be his friend again. Just hug him and tell him you love him many many times every day.

@sallysue

Heading 2 hours away to my son and family. My sister loves to go there and we lay the baby on the couch next to her with one of us on the other side. She never tries to lift him to carry him etc. it works great and she tells people how cute he is and that he likes her. The baby just lays there but the 2 year old grandson loves to crawl up next to her and show her things. She is just one of the family and everyone gladly makes the appropriate allowances for her. It’s a day off for me , smile!

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Hi @sallysue Enjoy your respite and thise smiles! Each is worth its weight in gold! I am happy just reading your post!

Enjoy!

@rmftucker

This thread is me the last week. 8 days ago we took my husband of 62 years to the Senior Behavioral Health Unit at the local hospital for evaluation. We had spent two sleepless nights with him, and he was seeing people who were not there and insisted every reflection in the windows was a person staring at him. We are waiting for placement in a Care Center as I just can’t take care of him at home anymore. This has been the hardest thing I’ve every had to do. Tears come easily as I visit with church friends, neighbors and families. The hardest thing was his accusing me that I was trying to get rid of him every time I went to visit. Last night was much better. Maybe the new meds they have started are beginning to work. I will find out more tonight.

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Hello @rmftucker I wish you strength on this portion of your difficult journey. I wish there were words powerful enough to express my thoughts and the support I feel for you!

May peace and strength be yours in plentitude these days.

@rmftucker

This thread is me the last week. 8 days ago we took my husband of 62 years to the Senior Behavioral Health Unit at the local hospital for evaluation. We had spent two sleepless nights with him, and he was seeing people who were not there and insisted every reflection in the windows was a person staring at him. We are waiting for placement in a Care Center as I just can’t take care of him at home anymore. This has been the hardest thing I’ve every had to do. Tears come easily as I visit with church friends, neighbors and families. The hardest thing was his accusing me that I was trying to get rid of him every time I went to visit. Last night was much better. Maybe the new meds they have started are beginning to work. I will find out more tonight.

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What a hard thing to do. I want you to feel support from me. Grace and peace.

@rmftucker

This thread is me the last week. 8 days ago we took my husband of 62 years to the Senior Behavioral Health Unit at the local hospital for evaluation. We had spent two sleepless nights with him, and he was seeing people who were not there and insisted every reflection in the windows was a person staring at him. We are waiting for placement in a Care Center as I just can’t take care of him at home anymore. This has been the hardest thing I’ve every had to do. Tears come easily as I visit with church friends, neighbors and families. The hardest thing was his accusing me that I was trying to get rid of him every time I went to visit. Last night was much better. Maybe the new meds they have started are beginning to work. I will find out more tonight.

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I hope you found your husband contented tonight. You are in a very difficult place but it is right for your husbands wellbeing. Take courage that it really is better for him there where he can be cared for. Keep loving on him.

Thanks to everyone for your words of encouragement. He was much more docile tonight and we listened to Polka music (his favorite) on YouTube. They have lost his hearing aids but hopefully they will find them in the next couple days. Always something. We are trying to locate a Care Center fairly close that has an opening. Probably nothing will happen until at least Tuesday with the holidays. The visiting hours in the Health Unit are very limited, and a Care Center would have more access so the family can keep better tabs on him. Just one day at a time.

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