Days of Mourning,Days of Grief and Dealing with Myself and Others

Things not to say to Me Right now.......


He or she has gone to a better place (mabye you believe that to be a fact but not everyone is not so sure)

It’s all part of God’s plan; God now has another angel; God wanted him or her in heaven (Please do not pass your religious or spiritual beliefs on to me, I may or may not belive this and it hurts me more to think that I am a bad person because I don't believe the same things about God as you do)

If there’s anything I can do, just tell me (I am independant and will very seldom ask for help and it just grieves me more to have to ask. )

I know how you feel )NO, you do not know know how I feel)

There’s a reason for everything; it was his or her time (I hate this one the most)

It’s been six months—isn’t it time to move on? (There is no time limit set for how long it takes for grief to subside,)

o Get over it already. (I hope you never have to have somebody say that to you.)

o Don't worry you'll see him or her again someday. (Maybe so but when, and what makes you so sure?)

o He is or she is not hurting anymore. (Maybe so, but I am hurting and there is not way I can find out if my loved is free from pain or not. )

o He or she isn't here on earth suffering like we are. (You don't that, they may be suffereng just as much)

o How are you coping with this huge void in your life? (That is none of your business and you are not helping out by asking me this questions)

o I am divorced, so I understand how you feel (At least that person is still walking the earth and you can still have some communication with them and your love for them is not the same as for a spouse who you loved and had not divorced.)

Maybe it was for the best. (For the best maybe, but saying things like this does not help a grieving person; it certainly doesn't feel for the best right now that I wish I could die)

o People die everyday. (Of course they do but that does not make it any easier for the grieving person who has just had their heart ripped out to feel any better)

o Stop dwelling on it. (You try that when that when your whole world just ended)

o They are in a better place. (And you know this how?????)

o There is a reason for everything that happens. (Could be, but you better tell me right now what it is)

o Well, Jill how are you making it without Jack? (Where's my gun?)

o When are you going to get rid of this stuff? (What do you care?)

o It's not good for you to stay in the house all of the time. (Getting out of bed is hard enough for me right now and getting out of the house is a major chore. I feel like crawling under a rock most of the time. I go out sometimes because I have to and sometimes I want to but if I go out with you, you need to know that I am still grieving and may not be good company and not judge me and if I want to stay in at home and maybe in bed for while, I will.)

o You should have been prepared for your husband to die when you knew he had cancer. (Yes, but you are are never prepared to lose the love of your life and even though I wanted him to die because he had to, my grief started when he first got sick and it seems like if will last longer because of it.).

You will find someone else. (Please don't tell me that, especially at my age; And do I really want to lose a 3rd person?)



Divorce is NOT the same as the death of a spouse. Yes, you are mourning the loss of a life together, hopes and dreams that have ended but that person is still on this earth walking, talking and breathing. You still have that choice if you want to talk with them. Death gives you no choice.

Delaying the grieving process not only prolongs your healing time, it can be worse for you in the long run. Holding it all in to "be strong" for everyone else can affect your own health, mental status and well being.

I have to admit, in the past I am guilty of saying some of the same "stupid things." I thought I knew what grief and grieving was and that it was basically the same for everyone, but it's not.

I have grieved for my mother, father and grandparents but until the death of my husband and it was only then, that I came to realize the different levels and depths of pain each of us go through when a loved one dies.

If you are a family member, a friend or coworker of someone dealing with a loss, just be there for them. Let them talk, ramble, rant, rave or whatever they need to do. Don't ask if there is anything you can do, just do it if you feel you want to help out.

The Life of a Care Giver

When Randy was diagnosed with MDS, he went down hill quickly. I was his care giver. At first it was not too bad but it meant leaving the house daily for early morning chemo and anti-biotics whch wore both of us out. It meant 8 different times in the hospital and the summer was so hot and parking places at the hospital were hard to find. Every day was a chore. I was living on auto pilot. We no longer got Randy out of the hospital and home, then he had to go back because of so many setbacks. He had to have blood and platelets twice a week; sometimes in patient and sometime out patient. His electrolytes were always out of whack which affected his brain. He was also found to have congestive heart failure.

I was so tired and I really didn't have too much time to grieve only that the Randy I knew and loved was not with me since his diagnosis. He was not lucid most of the time. I had to sleep lightly because he would get out of bed and fall or wander all over getting into things like pouring my scentsy wax out all over and moving things around and couldn't find the bathroom, often urinating on the rug and pulling out his pic line. It was a nightmare. Many times he yelled at me telling me to just leave him alone. I tried to help him get around but he fought me all the way. Then I was hospitalized for a some kind of infection and irregular heartbeat and high blood pressure. Randy was somebody who liked to be in control and he just would not give up his driving. When anyone but him was driving he almost had a nervous breakdown. But he nearly wrecked us one night when he was ill while driving and he finally knew he had to let go of his control and let me drive.

I was living in a nightmare that I could not wake up from. I caught sleep whenever I could. Randy was most anxious during the night. I had to keep him medicated or he got violent, fell down and bruised himself. Often times when he was somewhat lucid, he would cry and ask me to forgive him and that I was the best thing that happened to him. He would say he was sorry for being cruel during his terminal restlessness and that he was just plain scared to die. He finally had his motor home and then he was too sick to use it. He said he was so confused because he did not know half the time where he was or even who he was with. This made him more anxious and confused.

I know now how hard it is for a care giver. It's probably the most challenging and heartbreaking thing anyone will ever have to go through, especially a loved one. Watching them change completely. Watching them suffer. Having them yell at you when you are only trying to help. Having them try to tell you something but the words don't come or they are incoherent. Being worn out to the point of exhaustion. It gets to the point where you just want them to leave this world as they are suffering and the care giver is getting to point that they are almost ready for a break down. Please appreciate the care givers. Their job is probably the hardest job that anyone would have to do. And then to watch them die in front of you and it is bitter sweet because you know they are suffering but at the same time you really are never ready to say good bye to your loved one.

Goodbye Randy September 17, 2012: Jennifer's Visit

Well Randy is finally at peace. I am not yet. I spent a horrible hot summer in the worst waking nightmare anyone could ever imagine. Poor Randy suffered so much he lost his mind. I did not have him for but a short time before he was not even Randy anymore. I miss him so much and now I need to learn to fill my days and figure out what to do with the rest of my life. I do have lots to do and I need to go through thousands of Randy's things to do decide what to do with them. I do miss him so much. He left way too soon.  If you want more details of Randy's life, go to his MDS journal on my Facebook site.

Jennifer did visit for a few days and we went to a musical with Felicia and out to eat. We enjoyed time at the canyon house. I have not been feeling well again and have to go for more medical tests today. I have to take Wellington in to have an absessed tooth removed. Got more of Randy insurance and finance things to take care of. I did get one life insurance check.  There's always something to do but somebody is missing from this house and it is lonely.

Days and Days and Day...just not sure about anything just yet

Nothing much new to say here. My time is consumed by trying not to think or trying to think too much. Randy is about the same. To read about him go to my Facebook and choose Randy's MDS Journal.

I am thankful for those who have connected with me and offered support.  I surely do keep busy with all the running back and forth and not feeling too well myself has been hard but it keeps my mind off my aching body to some degree.

Randy's MDS and Camping ...Who Knows?????

We could hardly wait for summer. Camping season. Randy had been so tired. Well his hip hurt and he walked wobbly. One leg was longer than the other. He figured that was tiring him out and I am sure that added to it. He kept plugging along doing things that needed doing around here and paying for it later with constant pain and crippling fatigue. It got so he could not walk without a walker or some support if he had to walk very long. I had to walk very slow because he was always so far behind and believe me, I am a slow walker! Testoterone shots helped a lot at first. But then did not seem to later on. Well, he says and Matt agreed, a motorhome would be so much easier for him to set up than and truck and trailer. So we found a used motorhome we liked and traded in our truck and trailer. We were so ...excited. We already had three camping trips set up. A couple of weeks before our first camping trip, Randy began to experience terrible mouth pain and loss of appetitie. He lived on liquid. He thought it was his bad dentures and he got new ones, he also had a bone coming out on the roof of his mouth and the dentist fixed it and said it should heal. But his mouth just would not heal. We filled out motohome up with food and out we went for our first trip of the season in our new motorhome. It was so exciting. We took my little cat Gimli as we had before and he is a great camping companion. However, he got scared when Randy took him outside to put him in the motorhome and he scratched Randy. Randy got antibiotics and a shot but the scratch got much worse as well as his mouth did. He also had cat scratches from many months ago that had not healed and his toes were red and infected. We enjoyed our camping trip as much as we could at Crystal Hot Springs despite the fact the Randy was so tired and had no appetitie. So when it ended, we still had most of our food because Randy did not want to eat.
The cat scratch on his hand had because so much worse. It looked like a Brown Recluse had bitten him. His toes and feet were bad and he had a long scractch on his leg that he had gotten several months ago while moving a bed. Anyway, we had another camping trip set up so we went even tthough Randy was not feeling well at all. He tried to make the best of it. We enjoyed Matt and Kelly Jo Grace Carrillos company and Tina and her family as well at the campground. A few more days passed at the campground. Randy could hardly function and spent most of his time in the chair or going to bed really early. He went to bed really early every night. He was losing weight as well. The campground was not too far from the DR so he went in and after a blood test and seeing all of Randy's sores, the DR became very concerned. He said Randy's white and red blood cells were both low and abnnormal and put him in the hospital. We had to cut our camping trip short by 7 days but at least we got to see several deer. And we brought home a motorhome full of food. Next I will write about the diagnosisgnosis.


In May 2012, Randy Minor was diagnosed with Myelodysplastic Syndrome (MDS) In order to keep everyone up to date and aware of this disease that nobody really has heard of and to keep a record of Randy's day to day trials with this disease, I am starting this journal. This journal can be posted to and will be private from other folks on FB. I am hoping all of you will get to know a little more about the disease and what our life now entails. I am also writing a history of how we found out about his diagnosis.



Rita

Myelodysplastic Syndrome

Make Your Own Fun in Life

Man can I tell you how much I hate this new layout on Blogger?

Anyway, We have done a lot since the holidays. We just got back from Crystal Hot Springs and a good visit with Jay and Monica and Family and Matt and his family. We have learned that Randy's pain is caused by his being out of balance and causes him to sway when he walks His lower back and neck have so much artritis that the DR said he had never seen any so bad. What they are going to try to do is put in a new hip on his other side to even him out. But you know he refuses to do it during camping season. We have a used but new looking motorhome. It is 35 feet and it is wonderful and very roomy. A motorhome makes it easer for Randy to pull in and out and not worry about lifting heavy hitches and gasoline for the generator etc. I like it really well so far. It's fun to ride in.

What do you do when gasoline is so high and so is flying and you hate to fly, and your heatlh does not allow you to be gone from home for long periods of time? And you have 7 cats. It may seem silly but you find a place not far from home and take you motorhome and books and food and go set it up in a new place. You may not be far from home and it's kind of silly to spend money when you have all those things at home, but it is really exciting and those with little money can still have a wonderful time away for leisure. You may be only 6 miles from home but you can pretend you are 600 miles from home.Feeding geese, watching chimpmunks, etc No trailer or motorhome? If you are up to it, put up a tent. We like to stay in the woods and in commecial places. We are going to stay at Lakeside Campground down by Utah Lake. It's really nice there and there is a swimming pool. For people like John and Kathy and us old folks who have cats, we have figured out how to have a wonderful summer without spending too much.

Latest News and Christmas Past. and Another Year Older

Felica and I at Iggy's for Birthday

Thanks Tina for Our Birthday Lunch

Me at Mim's for My Birthday

Randy Celebrates with Me at Mimi's

Time goes by so fast these days. Christmas has come and gone. No snow at all. It's so different when you no longer have little kids at home. We had quite a scare as John had bleeding ulcers and was in the hosptial and went home Christmas eve. On Christmas Day, we ate at Denny's. It was probably the only place opened on Christmas and it was packed. I got lots of nice things for Christmas. Monica gave me a lovely personal family scrapbook. Tammy really outdid herself by giving us a trip to ST George in March at her timeshare. I surely do miss her and wish I could just drive to Green Bay and get there before 2 or 3 days time. Matt gave us restaurant gift cards and Jennifer gave me Scencty. Randy gave me lots of nice gadgets. Tina took me and Felicia out for our birthdays. I really enjoyed their company.  As for now, I have been reading a lot of good books and enjoying that so much. I want to get back to the fitness center and maybe take some classes. I am hoping my health will hold out and not be like last winter.

I sprained my ankle before Christmas and it was about well and then I hurt it again. It's better but I think it healed wrong because it still looks swollen. I still have a lot of aches and pains of old age but that goes without saying. I think I may have an impinged or torn rotator cuff on my left shoulder but I am learning to live with it for now. For New Year's we ate Chinese with Matt and family. I think that will be our tradition from now on. Randy had a funny but costly experience the day after New Year's.  You can ask him and see if he will tell you about it. LOL

For my birthday, we ate out at Mim's. Then Randy installed a new Brother printer for me. That was about all. I am getting so old and there is no cure. But I guess I should be thankful that I made it this long. Lots of people do not get that chance. So live on aches and pains, I am not ready for the gate yet. LOL

All in all. We are blessed and love all our family and after reading my ancestor's history. I have decided we are all wimps (including myself most of all) these days and really spoiled.