May Thoughts from a Caregiver...

Posted by Scott, Volunteer Mentor @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.

@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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Hi @tntredhead My thoughts are with you, especially this weekend. Holidays are just plain extra, extra hard and when you add horrible comments from the ‘peanut gallery’ it makes emotions go berserk.

To this day I absolutely don’t understand why so many people and especially family members feel free to voice hurtful, unknowledgeable opinions from afar on our caregiving, which have no basis in reality!

We caregers have thick skin, but it doesn’t mean we don’t hurt. Remeber it’s not you!

Continue in your strength!

Peace

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@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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Dear Trish, It never ceases to baffle me how people can pass judgement. You can cry on our shoulders any time and repeatedly, and for whatever reason and no reason. I just made myself a nice cup of tea. Why don’t you pour yourself a cup too? I wish I had cookies to offer, but I never was a baker. 🙂 Tell us something about your Tom that makes you smile.

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@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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Dear Coleen, Thank you for the kind note. You know Tom and I used to bake cakes. I didn’t like making the cake but I loved making it look much too good to eat. So he would come in the kitchen and do the baking and I would decorate and then we would give half of them to someone else. We had a bachelor neighbor who loved it when we would go in the kitchen together. Tom could tell the corniest jokes and, for some reason, they made me laugh! Not long after we were married, I became upset with him over something – I don’t remember what – and I said “That’s It. I’m out of here!” He looked at me and said “Where are we going? Don’t think you are going to leave me here.” Neither of us ever threatened to leave again but we often laughed that we would go together so might as well stay home. He was so kind to everyone especially our daughter, grandson and me. Tom adopted my daughter when she was 12 after we were married – my ex was not much of a father and signed the adoption papers after I threatened him for not paying child support for years. The adoption was Tom’s idea. He called me at the office about a week after we were married and told me he had gone to see a lawyer and he hoped I wasn’t upset. Well, we had only known each other two months so I was a little leery of what he was about to say. He then told me he went to see how/when he could adopt Irene and he was worried because he hadn’t discussed it with me. Irene was my bridesmaid when Tom and I were married and when we were pronounced man and wife, she turned around and said “Hey Dad”. So I knew she wanted to have his name and the adoption went through without a hitch after the social worked talked with our neighbor who asked why he was adopting his own daughter. It’s been that was ever since. Thanks for making me think of the good times. I’m trying to go off some depression medicine and I think probably that’s a bad idea right now. Will talk with my doc on Tuesday. Happy Memorial Day to all of you and if you still have your loved one, no matter what the circumstances, hug them, tell them you love them, let them eat ice cream if they want it and make as many memories as you possible can.

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@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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Thanks IndianaScott for the encouragement. I am so glad I found this site and have the friends on it I have. We are all hurting – in different ways – but the pain is the same.

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@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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Thank you for that smile, Trish. I just got goosebumps reading about the adoption story. What a guy. Now I want some cake too. So nice sharing a cup of tea with you. I look forward to tomorrow’s cup.

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@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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@tntredhead Hi Trish: I’m so sorry to hear of the distressing phone call. I just don’t understand how people can second-guess a situation that they have not personally experienced. I appreciate all of the good memories about you and Tom that you shared with us, you had a remarkable relationship and that is a treasure! I wish you peace and strength this holiday weekend. Teresa

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@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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@rmftucker I believe I understand, last year I placed a family member in an inpatient geriatric psych unit and she felt it completely unnecessary, but I knew better. As a result she was put on some meds that worked (and are still working) beautifully. She even admitted that she is feeling better. Take heart – you know what you did was for his good and I believe that will give you peace in the long run.

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@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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Great story. I think I’ll go hug my sister. Thank you.

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After 4 weeks in the Senior Behavioral Health Unit at our local hospital, we are still trying to locate a Care center that will accept my 87 year old husband suffering from Vascular dementia and Alzheimer’s. His condition has deteriorated from being able to stand and walk a short distance to having difficulty standing and his speech is slurred and very difficult to understand. I think he has had several more TIA’s since we placed him there. Because he also exhibited sexual disinibition prior to being admitted, Care Centers tell us he won’t fit with the current population even though he has been placed on medication and is stabilized for the past 3 weeks. Caregivers tell me he is no problem and they have to take care of showers, toileting and feeding him, as he has so many tremors in his arms and hands that he can not get a spoon to his mouth without spilling the contents. His aggression that I see is only directed to me. And it is all verbal since he is unable to move from a chair or bed. He dozes most of the time and only rouses if you touch him or directly speak to him. I am so frustrated. He needs to be in a more stable environment where there is not so much commotion from new admissions and dismissals.

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You went deep into your soul as you poured out your love for your wife to us. Yes, tears came quicly to my eyes as I read your feelings so beautifuuly described.

My husband is now in the middle stage of dimensia sliding too quickley to the more advanced side of middle. Each day is a blessing to have him with me no matter how much the pain inside my heart hurts.

Thank you for sharing.

Foxy Lady

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@foxylady42

You went deep into your soul as you poured out your love for your wife to us. Yes, tears came quicly to my eyes as I read your feelings so beautifuuly described.

My husband is now in the middle stage of dimensia sliding too quickley to the more advanced side of middle. Each day is a blessing to have him with me no matter how much the pain inside my heart hurts.

Thank you for sharing.

Foxy Lady

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Thank you for the kind words, @foxylady42 I understand your statement of each day, no matter what, is a blessing. Plus the part about heart hurt! Whew…..

I send you peace and strength!

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