For Those In Early Grief

[enna]

For Those in Early Grief ~ not sure where to add this post since it deals with all grief so I'm putting it under Living with Loss.

We have heard these things before but sometimes it is good to hear them from those of us who have been where you are now.

Most of our journeys are the same in one way yet so very different.

We have each one of us wailed, said how unfair to be left alone, felt the loneliness of our friends, family and co-workers leave us in our grief long before we were ready.

There is no right or wrong way to travel your journey of grief. Whatever you are doing is the right way.

Time does not dictate to us when we should be “over” our grief ~ there is NO time limit on grief. One day you think you are just fine and then you hit the cookie aisle in the grocery store and lose it. There will be “triggers” along your journey for the rest of your life. That is NORMAL. You are not sick ~ you are grieving.

Most people we encounter are really good and have good intentions when offering a hand during our grief. Those we think are insensitive are really not ~ they perhaps are struggling with what to say or do to help us. We will take these actions as cold and hurtful, but it is not about our grief rather it is just how that person is. It is OK to be hurt and to feel alone and to think no one understands us. This is all part of being human and we can only do the best we can.

Do not be afraid to reach out for the help you need on this journey. Death tears us apart and can suck the life right out of us. It is NORMAL to shut down for a while ~ remember that what has happened to you is the worst thing you have experienced and you will deal with it in your own time.

It does not matter what our loss is. The loss of a loved one or a precious pet is a loss that tear us to pieces. We need time to work on this and come to terms with what has happened to us. Grief work takes work. We must do our part to understand what has happened. Reading about loss, working with a grief counselor, and sharing our stories about our losses are ways we deal with our new lives. Grief changes us and it is up to us to recognize that this will happen and do something about it.

Be gentle with yourself. Accept where you are at this time.

I can guarantee that by being here whether you are reading or posting will help you on your journey. Those of us here will not tire of hearing your stories. We understand.

Anne

Treat yourself as kindly as you would a child. Grieving is hard work.

[Queeniemary]

Thank you Anne, your post puts it so very well. Grieving is a process, and there is no right or wrong, just what works for each of us. Very important to take care of ourselves, lack of sleep, lack of good nutrition make working with grief much harder. I love the attached picture!

QMary

[MartyT]

Perfect, dear Anne. Thank you ♥

[feralfae]

Perfect message and perfect image, Anne.

Thank you.

[Wifflesnook]

Dearest Anne this is lovely. But how are YOU?

[kayc]

I hope those in Loss of Spouse section see this...when I first started on this site I didn't veer out of that section, I missed a lot! This is beautifully put.

I, too, have been wondering how you are, Anne. I know you seem private and tackle your challenges alone, but we're you're cheering squad and we want to be here for you. You are so special, we love you!

[LadyCarrie]

Thank you, Anne. I'm not in "early grief"---or am I? Sometimes I don't know where I belong. I just know I hurt so badly, and I feel like screaming my head off. That would not be very helpful for Jerry's nerves, so I'll keep my screaming to myself. I know God hears me, although I scream silently. Knowing that He and you guys care helps keep me doing what I need to do.

Hugs,

Carrie

[MartyT]

Screaming ~ silent, loud or otherwise ~ is always acceptable here, in this safe place, dear Carrie ~ and yes, we DO care ♥

[LadyCarrie]

Thank you so much, Marty, for your response and for your caring. I care very much for all here.

I compose responses to others on the forum as I go about my daily activities, yet by the time I have opportunity to write, I become more asleep than awake, so I become concerned that what I write will be either senseless, or accidentally inappropriate. Whenever I can't write without sleep-typing, I can pray, for God can make sense of what I'm trying to say. He has a good Translator.

Hugs,

Carrie

[enna]

Carrie dear,

Your words are beautiful and come from your heart. I wish I could take your pain away, but we know that our pain is our to bare.

I learned many years ago that what comes into our life we either accept it our reject it. I have found it much easier to accept.

You and Jerry are in my daily prayers and I hope you know that virtual hugs can be a source of healing. I know.

Please remember that as you are giving your love and attention to Jerry it is most important to remember yourself.

We are here for you and screams do not scare us. We have all been there.

Anne

[LadyCarrie]

Our dear and precious Anne,

Your kind words and your kindness to me warm my heart, and bring tears of gratitude to my eyes (tears seem to be perpetually near to the surface). Thank you (all) for understanding where I am right now. Being understood somehow brings some relief. Most of the time, I'm all right, if functioning is my objective. I haven't taken to running naked through the forest yet (cougars rule), so I still have a toehold on my sanity ~ for now. Perhaps if I color my toenails a pretty turquoise, I can get a firmer grip. This seems to have worked well for you.

Thank you for your prayers and for your healing virtual hugs. I thank God for you, and for each one here.

Love and warm hugs,

Carrie

[kayc]

So true, Anne! Carrie, you have a husband to take care of and your own ailments to deal with, you have less time to compose responses here than the rest of us. Even so, you're one of our most faithful responders!

I hope you paint your toenails blue...

[LadyCarrie]

I gave some thought to painting my toenails blue, Kay, but decided that instead of mine being lovely like Anne's, I might look cyanotic, and Amberly would haul me off to a doctor.

As a cosmetologist, I've enjoyed trying just about every hair and nail color available. Those were fun and playful days, and I'm thankful for them. I still have so much to be thankful for today ~ deep and meaningful blessings. I read here, glean knowledge (education) from others, grab onto hope through the words of those who are healing somewhat, realize I'm normal, and thank God for the loving people of our forum, a God-given safety net for us all. I won't ask whether you understand, for I know you do.

I'm not unhappy; I'm scared ("frightened" sounds more refined perhaps, but "scared" works). All the photographs, iPad videos, and camcorder movies cannot keep Jerry with me. Sometimes I wonder whether he feels like I pursue him as though I were the Paparazzi. He doesn't mind. He realizes exactly what I'm doing, and he's all right with it, and perhaps even pleased.

My pastor visited us recently (can't go to church), and told me that Jerry is my "ministry now." I've never thought of my husband as a "ministry." All I do for him is because I am his wife. He's neither my patient, nor whatever he's supposed to be as my ministry. I don't want my role renamed. Other titles cause me to feel like I'm losing my place, so I resist them. Resisting doesn't freeze time for me, and changes nothing; I know, yet I just can't help resisting. I want my ministries to be those I've had in the past (I don't mind serving by washing feet, writing newsletters, women's ministries, or in any way needed). Jerry as my ministry causes me to feel like I've lost my place of service in my church, which is another loss.

Perhaps I need a perspective adjustment. Any ideas as to how that might happen? I need some simplicity and normalcy. That's not ever going to happen, is it?

My moods can switch from lighthearted laughter to tears in a nano-second these days. I'm sorry.

Perhaps the following text from me to Amberly at work yesterday might explain my mood fast changes somewhat:

"Daddy just had another episode. He said that three times lately, the "spells" have been bad enough that he feels like he's not in his body. He said that his brain sees, but it's like someone else is looking through his eyes. Does not feel like he is about to faint, although he feels like he is spinning. He says that he has no pain, but that he's had a dull headache all day."

He had been walking around the yard instructing a worker how he wanted the drips put on the roses. I was taking videos and photographs. I felt content, because he seemed normal, and was doing a normal activity; then suddenly, this episode happened. He doubled over onto me for support, and fear replaced all else.

Jerry told me last night that if anyone heard what he said to me, they would think he's lost his mind. He knew his explanation sounds strange, but he knows of no way to explain what he experiences. What he is describing is vertigo plus something more. It's the possible reasons for the vertigo that gives us concern (aneurysm again?). Amberly is as bewildered as I am. She says that a CT would tell us if there is an aneurysm, but then what can be done about it? Of course, if there is no aneurysm, we would feel much relief. Jerry chooses to not know, because he can't have the surgery if needed. I told his doctor about the episodes, for he needs to be aware. The doctor said that he understands Jerry's choice (how I pray it's the right one, for it's the one Amberly and I choose for him also!).

Hugs,

Carrie

[enna]

Carrie dear, I am not going to try to give advice about your “perspective adjustment” for I have none. My heart understands something of what you are saying but since we all stand on our own path it is impossible to truly understand what each one is going through.

“Scared” is a good word to use for that is how I felt while Jim was traveling his Alzheimer’s journey. Since we cannot “see” into the future all we have is what is right in front of us. You have your Jerry and that is a given. Just as you watch Jerry moving around doing his everyday things like monitoring where the drips go for the roses so you move through the day capturing every movement of his activities. It is what we do as husband and wife.

I did much of the same thing as Jim worked in the yard caring for the hummingbird feeders, trimming all the different bushes and sitting on the patio looking out at his little piece of heaven. I would watch him through the dining room shutters as I finished up in the kitchen before I joined him on the patio.

I understand your feeling when your pastor said that Jerry was your “ministry now”. I always resisted the word “caregiver” during those last years. I was Jim’s wife and we cared for each other. We just did things for each other as husband and wife do. I called Hospice when it was time and hired a nurse to “minister” to Jim. I tried to keep my role as wife right up to the end.

Remember, dear Carrie, you are here and we are supporting you. We will never tire of you coming here and sharing your thoughts.

It is one of the most selfless acts when we can allow another person to make choices about their life. You are a beautiful person and we walk with you.

Anne

[MartyT]

The way I "heard" it, Carrie, is that by saying that your Jerry is your ministry now, your pastor was trying to alleviate any guilt he thought you may be feeling about not going to church, and it was his attempt to assure you that he understood and accepted your absence. While that is an assumption on his part (no matter what you may be feeling) I suspect that he meant it in the kindest way.

In any event, I just love Anne's response to you and the understanding and empathy she feels for you about having been labeled a caregiver: "I was Jim's wife and we cared for each other. We just did things for each other as husband and wife do. I called Hospice when it was time and hired a nurse to 'minister' to Jim. I tried to keep my role as wife right up to the end." Yes. Exactly. That is a perfect description of what good hospice care can and should do ~ for the patient as well as the family. ♥

[LadyCarrie]

Dear Anne,

You said:

"I understand your feeling when your pastor said that Jerry was your “ministry now”. I always resisted the word “caregiver” during those last years. I was Jim’s wife and we cared for each other. We just did things for each other as husband and wife do. I called Hospice when it was time and hired a nurse to “minister” to Jim. I tried to keep my role as wife right up to the end."

I felt like doing a happy dance when I read this, for I knew you understand the reason I don't like my role renamed. Caregiving is what we all do as loving spouses from the beginning of our marriages, yet when used when our spouse is ill, the word caregiver can feel like a role change from wife to nurse for some of us. I feel better when I remember that I am not exchanging roles.

Dr. Charles Stanley referred to God as our Caregiver in an article I read a few days ago. I choose to believe my reading this article at this particular time was no accident. I asked for a perception adjustment, and received one. God takes care of all of us, and each of us is to take care of all who He gives to us. He has given us to each other here on the forum, and so we reach out to care for each other, and learn to love one another in the process.

As for Hospice, Amberly says that because our community is so small, only the most ill patients can get Hospice care. She's trying hard to get care for a patient who desperately needs help, yet there is no help for the patient at this time. There are too few people to help.

You said that you hired a nurse for Jim. After becoming nearly exhausted, I gave up, listened to Jerry's advice (insistence), and hired a live-in LVN to help me with my mother when I was her caregiver. I also hired someone to help with the housework a couple of hours a day. I'd rather do my own housework, except vacuuming, which "kills" my spine now. I am considering hiring a service to "deep clean" our house once a month. Spinal pain is a good incentive. Jerry is all for hiring someone for the house, as well as for the yard. I will hire someone for the yard, because I must. We are not wealthy, and I don't know what our financial future holds, so I am conservative with money. I grew up as a cotton patch kid, so I squeeze pennies a lot tighter than Jerry does. I know how to make a little go a long way.

As far as Jerry's doctors are concerned, we have plenty of professional help in our family (some are long-time friends; go to same church with local ones). Their patient's needs are being met, so they're pleased. I am thought to be quite capable of doing all Jerry needs done, and I am. They laugh when I say I'm tired, for they are tired also. They know that Amberly is a RN, and that we both are medical massage therapists and are pain institute certified. We used the Bonnie Pruden (Janet Travell) method of myotherapy (trigger point) while we had Hall's Health & Massage Clinic (we had a room for color and light therapy, aromatherapy, and more, but these things are not really necessary for Jerry's care). I worked as a CNA a millennium ago. It's like riding a bike; you don't forget.

When you told us about your percutaneous tibial nerve stimulation treatments, I knew that term, but I could not remember how I knew it. When Amberly got home, I asked her how it is that I'm familiar with it, since it's not something I would have been taught in any of my classes. She said that I know the term because of HER class. I drilled her for a test on it. I'm glad to have my mystery solved. I knew I'd heard that information before, but couldn't figure why that would be so. It was niggling at my mind. She said that she knows no more about it than the basics, which the doctor told you. She's interested in knowing how it works for you. I'll be thinking of you tomorrow, and praying all goes well for you.

Hugs,

Carrie

[LadyCarrie]

Dear Marty,

Thank you for your answer. You are right, of course, in all you said regarding our pastor's meaning. I do appreciate his care and kindness so very much. He knows of our efforts to get to church on Sunday mornings and Tuesday nights since January, so he was telling me that I'm not to worry about my other responsibilities for now. I still want to be a part. I didn't want to be exempt. Perhaps God has another work for me to do. I will wait and listen. Maybe He really does want me to just sit down and be still (I guess I'm like a kid who won't go to bed, and can't shut up). I will make the adjustments that I need to make. I fuss, but I do what I need to do.

Because these vertigo episodes that Jerry has are becoming more frequent, and are sometimes more intense, our pastor assumes the worst outcome. I know this because when he prayed with me on the phone last week, he talked with God about "Jerry's time on earth coming to an end." My heart hit my stomach. I really must find a way to ask him to not pray such with Jerry when he comes to visit next week.

We do not know that Jerry's life is coming to an end. Even his doctors do not know this. No one can know this. His doctors can give no prognosis. His local doctors are his close friends, and some attend church with us. They do still make the comments to him that they're surprised he's still here, as though he's so strong that he can hear these comments without harm (Jerry does not flinch or draw back; he smiles as though the comments aren't scary). Again, we must remember that harm is not intended. I think both Jerry and I have heard just about the hardest words to hear, yet we've chosen to understand that no harm is intended. We know that we ourselves might accidentally step on someone's heart and cause hurt or offense, although we would never cause hurt anyone on purpose.

Jerry has hopes of living "many more years" (his prayer to God, and expressed hope to me), although he gets anxious about it, especially when the pain is intense, or the vertigo episodes are bad (how could he not?). Jerry has a strong will to live, so he just might live "many more years." His liver enzyme numbers are good, even after being in complete liver failure. He might live longer than I live. I am scared, yet I have hope.

Hugs,

Carrie

[kayc]

Carrie,

I missed this post on the 29th, I'm sorry. That must have been scary when Jerry had his episode!

I wouldn't be too concerned about what the pastor said, he was undoubtedly probably just trying to reassure you that he understood that home is where you need to be right now to alleviate any conflicted feelings you might have (even though you may not be having them). He meant well. Yes, you are Jerry's wife and as his sweetheart you naturally want to do anything you can for him, just as any of us would with our husbands or they with us. It's how we are with each other.

[kayc]

Oh Carrie, now I read that your pastor prayed about Jerry's time coming to an end...I am so sorry he assumes so much, and incorrectly! I think I'd tell him that that is an assumption that could be very inaccurate, that the doctors don't know how long Jerry has. Yes, you definitely do not need him saying such around Jerry, or you either for that matter!

About hiring someone to help around the house or yard, if money is tight, could the church help you out? In our church, if we have someone going through something like this, we try to help one another out, understanding everyone can't afford to hire it done.