So sad with pre-grief

killinsnakesApril 30, 2005

I guess I need someone I don't know to give me advice. My DH (56 yrs old) was diagnosed with LC with many mets to the spine the first of March. Still in shock and whatever else it's called. No cure. Just radiation to help the pain. Now pain pills. I want to cry every day, all day but can't. How do you deal with someone dying in front of you? How do they deal with it, know they are just waiting? The last radiation was almost 3 weeks ago. He is still in bed, needs quiet and dim lights, lots of sleep and nauseas. How long can/does this go? I am with him every day all day, except one hour. I am afraid. Any advice? Thank You.

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lulie___wayne

I'm so sorry about your husband and can understand your fear and sadness. I wish I had some advice for you, but I've never had to deal with this. I can only imagine how heartbreaking and mentally and physically draining it must be for you.
I can only say that you can just try to take one day at a time and enjoy the moments that you do have with him. You need to make sure that you are taken care of though, also.
Caring for a very sick person can put a strain on your health also. Try to get some help so that you can get out some during the day even if it is just for short periods.
I wish I could be of more help.
Lu

    Bookmark   April 30, 2005 at 7:06PM
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mariend

Contact your local Hospis person at the hospital. The social servce office at the hospital or medical center should help. You need some help, don't be afraid to ask for guidance. Do you belong to a church? Do you have family/close friends. Take some time each day for YOU. Either look in a garden, read a book, watch a program, pray (if you wish) Sending hugs to you.

    Bookmark   April 30, 2005 at 8:55PM
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killinsnakes

Thank you both for your suggestions. I have a very good family that is helping. I just don't wan't to leave him for very long. I go out in the garden a little. I just hurt so bad for him. He seems to be bedridden right now, and has always been a very active person. I hope this goes away, but I just don't know. Lots of friends are also calling to offer help. He just isn't up to anyone being around yet. Thanks for listening and helping.

    Bookmark   April 30, 2005 at 9:43PM
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alisande

A good family is certainly a huge blessing. Please hold on to the suggestion of professional help as well, like a grief counselor.

So sorry you and your husband have to go through this.

Susan

    Bookmark   May 1, 2005 at 11:24AM
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socks

Over the weeks my mother was dying, I could not talk to anyone without crying. I finally called my dr. and he gave me a prescription for Ativan. I took one at night, and it made a different person of me. I was even able to speak at her memorial service, which is something I wanted very much to do but without the medication, I know it would not have been possible.

How wonderful you have loving family support. I'm so sorry for your husband.

    Bookmark   May 1, 2005 at 7:45PM
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heydeborah

Hi, i am a regular visitor of the care-giver site but decided to visit this site for the first time this morning and your posting made me have to write, i care for my dh (age 50), he is a diabetic, with both legs amputated above the knees, has kidney problems, can't hardly see, has conjestive heart failure and has had many minor heart attacks, he is also bed-ridden like your husband is. i like you know that my Al will not be with us for along time, andlike your husband my husband was very active in sports - playing and coaching and seemed to volunteer for anything he was asked to do. i too am a 24/7 care giver, i like you watch the pain he has, and watch him take percocet and 14 other meds and i also get to give him insulin 4 times a day. you are very lucky to have family that will help out, ours seemed to just drop off the face of the earth, even my husbands mother who lives a 3 minute car ride, doesn't cme over or call, our friends don't call or come over, but i do try and make every day count (my doctor said that he can be here one day and gone the next), others on the care givers forum know that if i make it from morning to lunch , lunch to supper and the evening (i divide my day into 3's or 4's) i'm a happy camper. for us the use of humour helps alot, we joke about everything and live for the moment. our house is a mess, but who cares - i'd rather spend quality time than cleaning and if someone doesn't like it they can bring a broom over anytime. my kids are wonderful (ages 22 and 16) they know that dad won't be around forever and they don't seem to fight like siblings do. i too went to my doctor and i was put on paxil (everyone is different) and they seem to take the edge off of everything. i also quilt and knit (alot of doctor's appointments and we are well known at the hospital). also i don't take things out on the cashier at the store or any other stranger, they don't know what is going on in our house. i try and take a brisk walk every morning, fewing people out then and you don't have to chat if you don't want to. i am just the opposite of you and wish i could cry, my Al has been sick for quiet afew years and i wish i could just let it out, crying is good for you! Hold your head high and enjoy every minute that you have (i remember at Easter Al was sick so we had Easter just 2 weeks ago, make up stupid things to celebrate, such as arbour day, the first of the new month). my dear fil had cancer and he said when i get better, my mil said your not going to get better, if your hubby thinks that he is going to get through this, let him, be positive. now that this first timer has rambled on and on my heart feels for you and your husband in many ways than one. debbie

    Bookmark   May 2, 2005 at 12:24PM
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mel03

Your situation sounds very similar to mine. My husband was diagnosed with LC and mets to the spine a year ago. It was a difficult time for both of us. We tried to make the best of the situation. He was so brave and positive. He made it easier for me in so many ways. When your husband has a good day...and he will...take advantage of that time. Enjoy each other, talk to each other...it all makes it easier. Let him know you love him...you can never say it often enough. Hugs and kisses mean a lot too...hold each other's hands. Let him express his thoughts and concerns if he can....this will make things easier for both of you.

Try to make some time for yourself every day to do something you enjoy...even if it's just relaxing with your favorite beverage sitting outside. It's difficult to be positive all the time....so use this time too to be sad. Give yourself "permission" to feel sad, to cry, whatever for 5, 10 minutes, whatever. It makes it easier to get through the day. You will get through this and it will be difficult but the love and support of family and friends will be a big help....accept their offers.

Take care

    Bookmark   May 2, 2005 at 1:42PM
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killinsnakes

Here is what I posted on another forum, but it applies to everyone here too. Thanks for the support and encouragement.

Thank you everyone so far for encouragement. No, you are not being too nosey! My DH is 56. He has always been a very active person. Went to work at 6 in the morning and would work 10 hrs, then do lots of stuff at home. We just built a new house this past year and have been in it 6 months. He had back surgery over 10 years ago and we thought this was just a problem from that. I don't think he is hiding. He got nauseas on the ride back from the radiation and it's still here or worse. The rides home were awful. Light just seems to really hurt his eyes. Yes, I am at home with him. I take an hour break a day (except today, I just can't make myself leave) away. He is extremely weak. I keep trying to take him little bits of whatever food he wants, but it's not much, or can't be swallowed or stay down. So far, he wants no noise, so I can't read to him. He is a tv person, but it has not been on for a long time. I have calls into doctors now. We have an appt. Thurs. with the onc. , it is two hours away. I hope we can make it. Had to cancel last week due to this extreme illnes. Now he is sore from that too! Thanks for all the care, it is helping.

    Bookmark   May 2, 2005 at 3:17PM
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adoptedbyhounds

Please talk with the hospital social worker, and also let your husband's doctor about the arrangement you have at home right now. They may be able to help you improve on the situation, especially the social worker who probably knows about resources you may not be aware of. The social worker may be able to put you in touch with supportive people in your community, too, so you don't feel so alone. When you take care of yourself, you will be better able to take care of your husband.

    Bookmark   May 2, 2005 at 8:50PM
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killinsnakes

Thank everyone so much for caring. We just now had a good talk and cry.....together this time. I think it got some of our stress out and into a kleenex. At least it was together.

    Bookmark   May 2, 2005 at 9:12PM
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mary_in_fla

Please think about allowing a hospice organization to help you; they are the experts, with so much support to give you. The following web site can help you locate a hospice near you, and there's also lots of good information on the site that might help ease your stress some.

Regards,

Mary

Here is a link that might be useful: hospice info

    Bookmark   May 3, 2005 at 11:15AM
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monica_pa

Been there, done that...three years ago today,I was caring for my DH.

My DH was sent home from the hospital after a determination that nothing else could be done. He was given 2 months to live...but lasted 2 weeks longer than that.

Your thread title describes what I went through. It IS grief...because when death is anticipated, you do start the grieveing process.

We had hospice, they provided meications, a daily aide to wash him up in the morning and nursing visits.

Towards the end....I woke up every morning wondering if he was still alive. While it was going on....and especially the first 3-4 weeks, It was almost too much for me...but then I settled down and just did what was to be done. The acceptance phase in grief.

We used the time to talk and also do some quiet crying together. I now treasure those days.

I can only relate my case...when he died, I didn't go through these phases again. I didn't have the disbelief and anger....just proceeded with the cceptance.

I didn't cry later...I did it before.

    Bookmark   May 3, 2005 at 11:18AM
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lasershow

I am so sorry to read of your difficulty. My mom passed away in September of brain cancer and I, too, grieved intensely before she died. You are watching someone you love slip away bit by bit, and that is simply torture.

The advice others have given is excellent. You should definitely call hospice; they are experts in this, they will manage his pain, and they provide support for YOU.

We all say "take time for yourself", but when we're the caregiver, it's very difficult to do this. You know it's important, but yet it's hard to turn off your brain. As best you can, snatch time here and there for you, even if it's only a half hour at a time. That's what I did. I would have dinner with a friend, or watch an I Love Lucy video.

Please keep us posted.

    Bookmark   May 3, 2005 at 10:22PM
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jae_tn

In November, 2003, my DH lost his fight with LC. It began with surgery Sept. 11 for a malignant brain tumor that turned out to be a met. LC, even though there was no sign of LC. He had the surgery and 25 radiation treatments then 2 weeks off before chemo started. He had lost weight but was in great spirits and the onc. said he had a great feeling that everything was going to go just fine with treatment and he needn't worry about future birthday, Christmas, etc. After the first chemo he was unable to take the 2nd due to low white cells. Over the next 10 days he went so downhill that I took him back to the hospital so he would get some platelets and boosts toward getting over the blow from chemo and built up for the next round. He went in on Saturday and spent four days going downhill and died on Thursday.
Due to the optimism of everyone, us included, we never had a conversation about him dying. He told everyone that he wanted to be back to mowing and yard work by spring and we led everyday as normal as possible. I fussed at him to eat, we did nothing differently as in preparation for death. In fact, when he went back to the hospital it was not in my, or his, wildest thought that he wouldn't come home. It seems that the radiation had kept tumor growth away while he was in treatment and, once stopped, the tumors multiplied in both his lungs and new brain activity. I can honestly say that, if he had to die, I would not have had it happen any differently in most respects. We were always saying "love you", kisses goodbye, etc., and "bickering" in a humorous way, as we had our entire married life. I think if I had suspected he was not going to live I would have not been able to carry on day to day as I normally did. He would not have been the same either and we would have been morbid and miserable. As it was, he died with me fussing at him to eat so he would get stronger. I told my minister that if I had known he was going to die I would have been nicer....... What I meant was I would have stopped trying to force him to do things that I thought would help him . Sure, there are some things that were not said that I regret, not all of them sentimental...lol....but knowing now what the outcome was, I wouldn't change anything. He died knowing I loved him and I knew he loved me. Neither of us needed to elaborate and the same went for our children. It has been almost 18 months and it still is often not real to me. I am so sorry for everyone here and can only say that the fresh wound pain does go away. Some days I get bored, lonely, all of the things that come with losing your partner of almost 40 years but having my children and grandchildren in my life, albeit some are far away, makes it bearable. Would I ever want to marry again........no way! I count my blessings for the life I have and had with him but wouldn't want to open myself up again to becoming so close to someone and having to face the possiblity of loss again. Look for happy days and happy times, regardless of the outlook for the future and recovery. I think it will make the days ahead easier.

    Bookmark   May 5, 2005 at 12:59PM
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killinsnakes

Thank you everyone. We just got home from a few days stay in the hospital. They have now found a spot on the brain that is putting pressure on his left eye and vision and causing a lot of the nausea. We are on lots of new medicines, new rounds of radiation and we will see what happens. I have not idea. Just need to get a grip again, cry some and see what happens. Thank you everyone for your thoughts. You are all saying things that are exactly how I/we feel.

    Bookmark   May 5, 2005 at 8:18PM
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gina_in_fl

My prayers are with you all. Pancreatic and/or Liver cancer are sooooo hard to deal with. The immense suffering hits the patient and the family. ... Been there, done that. Soooo sorry for your sorrows.

    Bookmark   June 7, 2005 at 2:46AM
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Carol_SWFL

You have been given some good advice. A few of the responses are very similar to what my husband and I went through in his battle with cancer. I lost my husband to pancreatic cancer 9-13-03. He was given 2 months to 2 years to live and with chemo treatments survived 8 1/2 months. My family, good friends and a Grief Share group have helped me deal with life without my spouse. My thoughts and prayers are with you all. Carol

    Bookmark   June 9, 2005 at 8:45AM
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sarahbn

I lost my "fiancee" 4/17/04. from throat cancer. I think I know how you feel when death finally came it was very peaceful. I was afraid of it. It's much harder for me now. Sarah

    Bookmark   June 17, 2005 at 10:45AM
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