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Arrangements

sassy1
Posts: 54
Joined: Oct 2009

Yesterday the nurse was here from hospice and as she was getting ready to leave, she asked me if I had made any funeral arrangements yet. I advised that I had not. She recommended that I start making them next week. She caught me off guard. When she called this morning, I asked her if she thought my husband would make it through the holidays. She advised that he would probably be okay for Thanksgiving but not for Christmas. I have spoken with my brother-in-law and asked him to go with me next week to make arrangements. I am at a loss for words.

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

We didn't make any arrangements before hand because my husband didn't want to do that. He did tell me his wishes. We already had a plot. When my father died my husband decided to buy a couple more plots. He thought they were a good deal. Both my husband and I had decided on cremation so the place is big enough for a family plot if anyone else wants to add their ashes. My husband had already talked to our pastor about his memorial service. So I guess some things were done. My sons and I went to the funeral home and took care of everything else after my husband's death. Since he was being cremated and the memorial service was off site, there wasn't much to do. Mainly it was answering questions for the death certificate and newspaper. We have a very honest funeral director. He didn't try to talk us into anything expensive. That was my experience. We only have one funeral home in the area, and the owner is also the coroner. I guess that simplifies things, too. You need to decide for yourself what you want to do, and also follow your husband's wishes. I actually knew one man who not only planned his own funeral, he haggled over prices with his funeral home. He even went online to find a cheaper casket and ordered it ahead of time. If you're not ready to do this, don't let hospice push you on it. Fay

sassy1
Posts: 54
Joined: Oct 2009

My husband and I have discussed what we both wanted over the years and always planned to take care of the arrangements before hand but the extra money was never there. Unfortunately, my husband is at the point where he will wake up to eat but then he goes back to sleep. He sleeps a lot and really doesn't want to discuss anything when he is awake so I do want to take care of things now so that I don't have to worry about it later. I am going to take my brother-in-law with me because he may be able to haggle a little better than I can with the situation as it is. This funeral home did take care of both of their parents and they also know the owner so hopefully that will help the situation. I also spoke with my mother who went through the same situation with my father and said that it was also better to do it prior although they did not have to worry about plots because my father was a veteran and had space available at a military cemetary.

The nurse called me back on Thursday and I asked her why she recommended that I make the arrangements. I just came out and asked her if she thought that my husband would be here through the holidays and she stated that probably for Thanksgiving but not for Christmas. That was total reality to me. I see how he is declining. He has lost weight and eats but not much. This is a man who used to eat double helpings for dinner and now eats enough to fill a salad plate. He takes three different pain killers and complains of still being in pain. He says the only time it doesn't hurt is when he is asleep which now is almost 22 hours a day. I hate to see him suffering. And the more I think about him and what is happening the more I sit here and cry. IT HURTS SOOO MUCH!!! And having to make funeral arrangements no matter when I do it is just making everything so final.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

My husband just passed one month ago today. When he was diagnosed in March 09 the doctor told me that I should make "arrangements". I was devastated that he would say that, but I also realized that lung cancer is a certain death sentence at his stage 3, so I actually forced myself to do it. It was sooooooooo hard to walk into that mortuary and make arrangements for my loving husband. But, I'm very glad that I did it then instead of "after" his passing. That way hospice made all the phone calls necessary and I was able to just lay down and cry instead of going to the mortuary within hours of his passing.

Because of this, I will be making my own arrangements because I never want my son to have to deal with something like that. So, I encourage you to do it ahead of time to make it easier on yourself.

sassy1
Posts: 54
Joined: Oct 2009

I am so sorry to hear about your husband. You have my deepest sympathy. I have made an appointment to go Tuesday afternoon with my brother-in-law and his wife. I feel that I will need the support even at this stage. I don't know about you but I get so annoyed when I see all the commercials on tv for fundraisers for pancreatic cancer and breast cancer but you never hear anything for lung cancer. You are right, it seems that it is an automatic death sentence. My husband was diagnosed with Stage IIIB in June of 2002 and went through a year of chemo and a month of radiation. He was diagnosed with the stage IV in May of this year. I know I should be happy for the seven extra years that we had together, but I just feel that lung cancer doesn't even get recognized as a survivable disease. Thank you for the advice, I definitely am going to make the arrangements this week because you are right, afterward I am sure that all I will want to do is just curl up and cry. I would like to know though, I have family members who are asking me to come and stay with them upon the passing of my husband. Right now, I feel that I just want to shut myself away and grieve alone for him. Is that wrong? What did you do and how are you making out?

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

I know that making the arrangements are very hard and I'm glad you're not going alone. I went alone and it was torture.

As far as spending time with others after it happens that you'll need to decide for yourself but as for me, I spend all of my time alone except for a few short talks with my son. I prefer it this way for now. I don't feel comfortable crying around others.

I'll be thinking of you!

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

For some reason this double posted.

terato's picture
terato
Posts: 384
Joined: Apr 2002

sassy,

Following my mother's death in 2006, the attorney who handled her estate advised me to plan for my own demise, since I have no other immediate family members to assume responsibility for my affairs. I now have everything, will, trust, power of attorney, cemetery plot, and head stone (1951 - ?). I am not ready and not so willing, but, at least, I am able.

Cancer is not our only enemy out there, so is every drunk driver.

Love and Courage!

Rick

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am so sorry to hear of your situation. I am a 20 year survivor of non hodgkins lymphoma and I made my arrangements for my demise several years back, mainly for my children's sake, make it easier for them if I passed sooner rather than later. Like Rick said, cancer isn't the only thing that can take us. No one knows who or when except for the Big Guy - as far as I am concerned so no matter what the situation we should all be prepared.

It is such a hard time for you. Couldn't you just have family go and fill in the final details? Give them the basics and they can call you from the funeral parlour or the lawyers office if they have questions but then you can stay with your husband and take advantage of every possible moment with him in these circumstances? However, maybe going makes you feel as if you are helping him too so whatever you feel you need to do then of course go with your heart.

I can imagin how shocking it was to hear the nurse tell you to get his affairs in order and tell you that Xmas might be too late, no matter how educated me are in a person's (or our own) health situation it is always a shock to hear something as final and shocking as 'get your affairs in order NOW'. Hugs.

You are blessed to have family there around you, willing to help, so let them help you by relieving you of anything that could make this time easier for you. You are in my prayers, Bluerose

sassy1
Posts: 54
Joined: Oct 2009

I want to thank everyone for the advice. I have decided that I will go with family and make arrangements. My husband was a member of a fire company and he is an ex-chief so I will also have to contact the Fire Commissioners to make arrangements for the use of the fire equipment. Unfortunately, this I will not be able to do until after my husband's passing. I have also decided that after my husband passes and I get myself situated, I will make my own arrangements as you have suggested because I have no children and I can't really rely on other people so I want to take care of it myself. They say that in situations like this it brings out the best and the worst in people. I have found who the real friends and family are and I think what hurt my husband most was finding out that people whom he thought would be there for him have not been. It almost seems that people think it is a contagious situation and don't want to come near. Even a card from them would have been nice for my husband. I know that there are so many things in this world that hurt and kill people but I guess with the original diagnosis of the lung cancer, it just brought it to my attention that there is very little being done to help people in this situation. And I hear a lot that people feel that if you get lung cancer, you must have done something to bring it on yourself. I just feel sorry for people who think that way because I wouldn't wish this on my worst enemy. I am starting to ask family and hospice for more help now because I think it is getting to the point that if I don't, I am just going to fall apart.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Just a note of validation that from the sounds of it you are doing everything right - especially asking for the help you need and you are right, if you try and go it alone there is a big chance you will lose it so good for you - let them help - it's good for them too.

Oh Sassy you are experiencing so many feelings and experiences many of us have had, and our families, of losing friends that we thought would be there for us but gaining true friends - sometimes strangers - who will help you through. Yup there are people who think that a person who gets cancer has done something wrong to get it and it's just sinful really to think like that. I guess it's ignorance.

Well you have come to the right place for added support so anytime you need to vent we are all here for you.

Be careful to take care of yourself along the way, I know you seem to be now by asking for help but just keep yourself in mind too as you go about this stressful time. Blessings, Bluerose

terato's picture
terato
Posts: 384
Joined: Apr 2002

sassy,

I have no children and have been divorced for over 20 years, so I rely on cousins and a few close friends for help, when I really need it. Most of the time, I just get by on pure dumb luck and the intervention of the spirits of my deceased loved ones.

Anyone who believes that people with any type of cancer "brought it on themselves" is an idiot, pure and simple! He/she is among the most odious of vermin ever permitted to inhabit the earth. Need I say more?

Does your hospice offer bereavement counseling?

Love and Courage!

Rick

sassy1
Posts: 54
Joined: Oct 2009

I have been taking care of my husband since he became ill and was in the hospital from May 11th and I brought him home from rehab on August 21st. I have been with him every step of the way and I have fought anyone trying to support me because I was taught by my parents that you have to look out for yourself. Well, since my husband has been so ill and I have taken care of him, I have let myself go. I don't sleep much because I sit here next to the baby monitor listening to him breathing. I'm actually afraid to go to sleep. I'm afraid of what I might find when I wake up. I know it's inevitable but I'm actually afraid of finding him already passed on. I've tried to explain it to the nurse but she tells me that I need to just go to bed and get some sleep and whatever is giong to happen will happen. I can't look at it that way. Last night was a very rough night for me because Glenn, my husband, was a lot like his old self. Then I sit here alone at night and I think of what the nurse told me and I just start to cry. I needed to talk to someone so I called my sister-in-law who I've never gotten along with because she really never approved of my husband and I marrying because of our age difference. I'm glad I did because she needed to hear exactly what is going on with Glenn and she is going to come and see him. She hasn't seen him since August. I think she may be in for a bit of a shock. I know I just go on and on and on but it's like everything is bottled up inside and it just comes out like a volcano erupting. I'm just happy I found the site and that I have people that I can reach out to who understand what I'm going through. As far as the hospice having a support group, yes I think they do. I will double check though. And after thinking everything through, I have decided that after my husband's passing, I will stay in my own home where I can be alone. Up until I married my husband, I was always a loner and I feel that I will need to be alone just to be able to accept what will have happened.

Thank you all for being there.

HUGS
Shirley

terato's picture
terato
Posts: 384
Joined: Apr 2002

Shirley,

Following my brother's suicide, I was an emotional train wreck. Individual and group counseling brought me back to sanity. When my mother died in 2006, I took full advantage of the bereavement programs offered by her Rainbow Hospice. If your hospice does not offer bereavement programs for family members, please inquire at your treatment center or local place of worship. I strongly recommend bereavement counseling as a path towards peace and healing.

Love and Courage!

Rick

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

If I read your last post right it sounds like you are looking forward to quiet time for yourself after you husband has 'gone home'. However I just catch a glimpse of going into hiding and while that is expected for a while after a loss you have to make sure that you don't retreat to seclusion as a lifestyle. Take the time you need to grieve WITH the help and monitoring of a good bereavement counsellor, as Rick suggested, they know the pattern of greiving and know when it goes wrong too. They can keep an eye on you from a distance too, without interferring in the normal bereavement process. Please think about that sooner rather than later.

Too I would give that group another chance, you felt like a newbie and excluded but really if you just approach the facilitator with your issue I am sure they will bring the group back into focus.

I continue to hold you and your husband in my prayers. Blessings Shirley, Bluerose

sassy1
Posts: 54
Joined: Oct 2009

I am going to take your advice. I'm going to talk to the hospice tomorrow and see if the counseling will be available after my husband's passing. I think sometimes it is much easier to talk to a stranger than it is to your own family. They always seem to think that you can just "be strong" and handle the situation. Granted, they all tell me that they would not be able to do what I have done and am doing for my husband, but if you love them and as the vows say, "in sickness and in health", you just do what needs to be done without a second thought. I know I carry on but my husband has had a couple of bad days. Today he is sort of in and out of it. One minute he knows where he is and then the next, he has no idea where he is at. I'm up almost 24 hours with him now because even though he's taking medications at night, he does wake up and I'm afraid that he is going to wonder around and hurt himself. Just getting up off the bed is a chore for him and I don't want to go through another fall with him. He is just healing from the one four weeks ago. God, I don't know where the time goes. It just seems to be flying by. I was thinking about decorating for Christmas for him already. I usually get a real tree and I think I will just get a smaller one this year. I want him to at least experience the holiday before his passing. He always enjoyed Christmas because it has always been my favorite time of the year. I always started listening to Chritmas music right after Halloween but he enjoyed it also. I just have to wait until the real trees are delivered before I can do anything. I don't want him to miss the season no matter what. Tell me if you think I'm crazy.
Shirley

onlyhuman
Posts: 102
Joined: Sep 2009

Hi Shirley
We were only told last week that my husband has run out of treatment options. Over the week however he has gone down hill very quickly. He now can barely speak and has mobility issues. He is also starting to sleep a lot. I have some family around but most of my family is in a different country. The ones here are going away for the holidays. I too have been advised to look into funeral arrangements. Its so hard but I will call the funeral directors today. Fortunately we cremate and so there should not be very many arrangements to make. He has not had a good day yet since last tuesday.
I have been seeing a counsellor for a few months but this experience is so isolating I sometimes feel that people not experiencing it for themselves have no clue.
Just had to let you know that you are not crazy and you are not alone.
Sangeeta

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am so sorry to hear about your husband. It sounds like you are in a similar position to Shirley in this experience. I hope you gain some help from things we have written to Shirley here too and you are an inspiration to her in that you choose to see a counsellor beforehand. Make sure you tell the counsellor how isolated you feel this experience is making you feel so that perhaps they can intervene with help for you at home as well, for you and your husband.

Take care of you too along the way. Blessings, Bluerose

sassy1
Posts: 54
Joined: Oct 2009

I'm sorry to hear that you are going through the same process as I am. I know it is extremely hard to handle and sometimes to even understand why these things are happening. Until today, my husband was weak but was able to walk to the bathroom. Now though, he is extremely weak and I can no longer trust myself to help him into the bathroom because I'm afraid that he may fall again. I will just move the portapotty into his room. I have been talking to a Reverand for the last couple of months so I do feel that I have had some support from him. He went through the same process with his wife. She passed from lung cancer and he took care of her. So I guess you can say because of his qualifications, I have had a little bit of counseling. He calls me at least once a week or I give him a call when I need to talk to him. He has been there for me. I know that my husband's family and some of mine will be here for me. I also want you to know that I am here for you. It's a good feeling to know that there is someone out there that you can talk to who is going through the same as you. I have done a lot of soul searching this past couple of days and I know that "what does not kill us only makes us stronger" and that I will come through this whole situation a stronger person. I am just feeling sorry for myself I guess because my husband won't be here with me to see the results. In a way, I feel that I have already lost Glenn to this disease because he has become someone that I really don't know at times. I know it's not him but the illness and that the man that I love is there.

I can't believe that your husband has declined so quickly! It has to be very hard for you because you have not had time to adjust as the disease progressed. Just take it one day at a time, I know a cliche, but that is the only way that I have been able to survive. I don't make plans normally but I have decided to do my home for the holidays as soon as I can get a real tree. We always had artificial until two years ago and since then, we went to real. I think my husband will enjoy it.

While I speak with hospice tomorrow, I will ask them also, if there is any way to get someone to come and sit with my husband while I try to get some rest. I only slept for an hour and a half last night and I noticed today that at times, I was a little annoyed with my husband. I can't let that happen again.

Also, thank you Bluerose for the recommendation. I am going to follow through.

Shirley

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I think decorating for Xmas will do you both good - bring in that bit of normality despite what is going on with his condition. I think it will be a distraction for both of you in a way, sad too at times not doubt but I think it's still a good idea.

The only other thing I wanted to say, and I'm so glad you are going to see a counsellor, is, why wait to see one after he has passed? I really think they can help you now too with this process you are going through - not just afterwards. Think about it. Too you are saying that you are not sleeping and I really think you should consider having hospice come in and sit with him while you rest. You need your strength too, for him and for yourself. Hospice is there for many stages and I really think you should talk to them about helping you out now too.

I'm so glad to hear that you are going to talk to hospice, just consider them helping you now too, okay?

Blessings, Bluerose

terato's picture
terato
Posts: 384
Joined: Apr 2002

"When you face a rigged game (cancer), play it through as a practice." Go ahead with Christmas plans or any other semblance of normalcy, they will help towards retaining sanity and provide you with a sense of control.

Blue is right about consulting hospice regarding your present anxieties, they can "have your back" as you face the future.

Love and Courage1

Rick

SonSon's picture
SonSon
Posts: 186
Joined: Jul 2009

[[Anyone who believes that people with any type of cancer "brought it on themselves" is an idiot, pure and simple! He/she is among the most odious of vermin ever permitted to inhabit the earth. Need I say more?]]

I was recently at an event with some "bible-based" Christians - that is what they called themselves.

The two ladies I spent much time talking to said that cancer is a result of our "original sin" (their words, not mine). One of the woman had breast cancer (in remission).

What a strange concept to think a God would punish one person with cancer (or any other thing) because of someone else's misdeeds.

Fatima

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

I was away for the weekend and then had my computer do strange things this morning, so I'm just catching up on your posts. I want to assure you that you are not crazy, just feeling that way. I still haven't found some of the things I put away during my husband's final days. It drives me crazy. None of them are that important, but I just can't remember where I put them. I also found and still find myself starting a chore, then moving on to something else before I have finished the first one. My thinking is really fragmented at times. I will tell you, too, that my husband did pass away while I was napping. My sons are convinced that he did it on purpose. That may or may not be true, but it was ok. I had told him often that I loved him; I hadn't left anything unsaid. I know that he went peacefully, and I am at peace. I'm sure you are doing the same. I'm glad you are asking for help. People do want to help. Also, I think the idea of staying in your home and taking some time to yourself after your husband passes is a good one. I have often heard it said that we should take at least a year after losing a loved one before making any big moves. I believe that. I am in the home we lived in for the last 33 years. I probably won't stay here forever, but it's where I need to be right now. You are going through a very rough time. Get some rest and go on and on to us whenever you want. That's why we are here. I can go on and on myself. Fay

sassy1
Posts: 54
Joined: Oct 2009

Fay,
Thank you for the support. I definitely will be staying in my own home. I know that when my father passed my mother made a very hasty decision of selling her home and moved in a matter of months. She has lived with that regret ever since. Unfortunately, she found that it was the wrong thing for her to do but it was too late to change it after she signed all the papers and sold the home. I won't put myself in that situation. I have lived in this home just about my whole married life and all of my memories with my husband are here. I won't give that up.

I am going tomorrow to make partial arrangements for my husband and myself and will finalize everything else after my husband passes. I have found today, after speaking with my sister-in-law, that the family is having a hard time accepting the situation. So I will make partial arrangements and as I said, I will complete the arrangements after my husband passes. I think they are only the things that I can arrange after he has passed anyway.

I have also decided that I am going to celebrate Chritmas early with my husband. I advised my nephew and the family today that I am going to be decorating my home and getting a real tree as soon as they are available. In fact, my nephew said that he will pick up the tree as soon as they are available. The family gave us a rocker recliner today and I actually brought my husband out to sit in it. Even though he hallucinated a little, I think he enjoyed sitting out here with me and we actually ate dinner together although he did not eat that much. Maybe about four or five bites but that is better than nothing. I think that he will enjoy sitting here and watching the Christmas tree. I think he will enjoy the lights more than anything else.

Thank you for being there.

Shirley

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

all the right things to do with a loved one in this kind of situation. I mean it. I think you are just doing the most loving and important thing by having Christmas early and bringing in a real tree for all of you, it will be so wonderful for your husband to feel a part of it all - something that has such wonderful memories like Xmas with the family. Even though he might not be totally lucid here and there he will obsorb the love and feeling and that will do him good so much good spiritually.

What a wonderful thing to get the rocker recliner for him to sit in, out there with you having supper just like you used to, that's just wonderful.

I hope you check in with hospice for any advice they might give you to help you at this difficult time but sounds like you could coach others in to how to remain 'normal' in the face of a grievous time such as this.

It does my heart good to witness this kind of love that you most obviously have for your husband, how wonderful.

Don't burn out getting this organized now, ask people to help, sounds like some are already. Let us know how it goes if you have a minute. Hugs, Bluerose

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

I think celebrating Christmas early is a great idea. We celebrated every Christmas for the last 6 years as if it were our last. I can see your love and sadness, but you are making the hard decisions and looking ahead with love. Of course the family is having a tough time. You all are, but making new memories is a good thing. Hugs and prayers, Fay

sassy1
Posts: 54
Joined: Oct 2009

Well, my plans were to celebrate Christmas early but unfortunately, I think God and my husband have other plans. He has been in extreme pain for the last couple of days and the hospice nurse came today. She increased his pain medication and he is sleeping constantly now. I just leave Christmas music playing for him but I don't think he even recognizes me anymore. I did manage to get his medication into him tonight but I think if someone puts something into your mouth, you're going to automatically swallow. I put his pills in applesauce now because that's the only way he can seem to swallow them. I still intend to decorate for Christmas even if my husband has passed, because it will be in his memory to celebrate the time we always loved to spend together.

I made partial arrangements yesterday and I took my brother-in-law and sister-in-law with me. I sat there on the verge of tears because of what I had to do and she was acting as if she was shopping for a car. I had already picked the mausoleum that my husband and I were going to share and she just sort of took over. She started asking about payment arrangements and I just sat there and didn't say a word. She did put down the deposit and I just looked at her because I am the type of person who doesn't really want to embarrass people in front of strangers. Well, this morning I get an email from them telling me that they checked their finances and they can't afford to pay for the cemetary. They said they would call me this evening. Well, he did and he wanted to know if I had changed my mind about which vault I wanted and that way it would make it easier for them to pay. I advised him that I already took care of it and he asked what I meant. I advised that I was sending the check out on Friday to take care of it. I am also going to have the office credit back their payment for the deposit on her credit card. I told him that I had no idea that they were going to do what they were talking about last night as far as paying for anything. He then said, "well, that's why we thought you asked us to go with you". I then advised him that, no I only wanted them to go along for moral support. I was amazed at the gall of these people that they thought they were going to decide how my husband and I were going to spend eternity.

My brother-in-law then in passing asked how Glenn was doing. I told him that the nurse was here today and he is in severe pain and that his medication was increased. It is only a matter of time now. His reply was, well if there's anything we can do, just give us a call. Now is that denial or what!!! He is what I call a very caring brother. But of course, his wife advised me that he and her daughters are having a very hard time over the whole situation. Well, what am I having! A party!!! They just don't seem to understand that this is not about them, it's about my husband Glenn and his iminent passing. I wish that I could be so non challant about everything.

Anyway, I had a hospice aid here this afternoon and I got out for an hour. I felt a little guilty but it felt good to get out. I only walked up the street to see my mother but it still felt good. Tomorrow, I have the aid here for two hours and I am going to take a book and a cup of coffee and go sit down at the beach for a while just to think and get away. It sounds terrible I think, but I have have to prepare myself for what is going to happen and also for my future without him. One thing I know, I have and always will love my husband. There will be no other in my life. He was my first and and will be my last.

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

People, relatives included, are just goofy sometimes. I have come to that conclusion. How dare them assume anything. It sounds like you are doing exactly what you should be doing. Don't feel guilty about taking time for yourself. This is a difficult journey and you need time to just be. My husband was not very responsive toward the end, but I never doubted that he knew I loved him and was doing everything I could for him. I'm sure your Glenn knows that, too. Fay

sassy1
Posts: 54
Joined: Oct 2009

Fay,
I now have the hospice coming every day and Glenn doesn't really know me anymore or if he does, he doesn't show it. I'm sure you know what I'm talking about. I feel so bad for him and I've told him that I love him and that when he is ready, it is okay for him to go because I will be okay. I feel that this is the hardest part of the journey for him because he is in transition, as they say, but it seems to me that he won't let go. I don't think I'll be seeing his family here anymore because as I have said before, they cannot handle the ordeal. I don't think this is something that anyone wants to go through but when you love them, you do anything you can to support them and make it easier for them. They don't seem to understand. Now that hospice is coming every day, I will be getting out for an hour or so because I do have things that have to be taken care of, as you know. I have to transfer the title of the car to my name and I want to do that while he is here because it is less of a problem here. Otherwise, there are all kinds of legalities. At this point, I am actually afraid of finding my husband already passed. Is that bad of me to feel this way. I just want him to pass on quietlly but I do and I don't want to be there when it happens. I just am very confused but I know that it will be soon. Unfortunately, he will not have had the chance to celebrate Christmas after all. But I feel that I still want to go through the holiday process of decorating in his memory. Am I wrong? I am just so upset and confused right now.

Shirley

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

You are not wrong. My husband did pass away when I was out of the room, but I know he just slipped peacefully away. That's ok. I prayed that he would have a quick, peaceful passing, and he did. You are being very brave. Telling your loved one that it's alright to pass is very hard especially if you have been in the fighting mode (trying to beat cancer) before this. You feel like you're giving up, that you should do more. But you have done everything you could. Now it is time for acceptance, to take care of the business that has to be dealt with. People who have not been there really don't have a clue. It's not easy to be with your husband during this time, but you know that you are doing the right thing. Believe that! I really do believe that Glenn knows you are taking care of him with love. He can't communicate that to you, but I believe he hears you. His body is not letting him talk, but his love for you is still there. It will remain with you forever. Fay

sassy1
Posts: 54
Joined: Oct 2009

Fay,
I just finished cleaning my husband up, changing him and giving him all his medication a little while ago. I'm sitting here now crying and I can't stop. I see him now and I look at his pictures and remember what a strong man he was and God forgive me, I wish that his suffering was over. I just touch him to change him and he yells in pain. I don't know what else to do for him. The hospice aid today said that when she rolled him over to wash and clean him that he yelled out in pain. I don't know what else they can give him. He's on so many different pain killers that the only other thing would be the morphine by IV. I know that I cannot handle that. Sometimes he has such difficulty breathing and he is constantly clearing his throat. He still takes the applesauce with his pills in it but I don't know for how much longer I can get him to do that. He doesn't seem to recognize me and tonight my brother went in to see him and it brought him to tears. I'm just wondering how long he can go on like this. It's as if he doesn't want to give up. I can't sleep at night because I lay here and listen to him breathing on the baby monitor. I now have hospice coming every day and they are also going to have someone here for the weekend. The only thing is, I thought it was going to be for a couple of hours and it's only for an hour. I had several errands that I had to take care of today and I raced to get it done in the hour. Monday I am taking going to transfer the registration on the car to my name so that is one less thing I will have to worry about after. I feel as if this were a nightmare that I can't wake up from. If only it were.

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grandmafay
Posts: 1612
Joined: Aug 2009

It's good to cry and release some of the stress. It's normal to wish that your loved one was not in pain. I know you feel the guilt as I did about wishing for a quick end. It is the right thing, though. He would wish the same for you. My husband also cried out when hospice was cleaning him up. My son said no one was going to do that to him again. He died early the following morning before they came back. My son was willing and ready to stop them. They had told us that it might be hours or it might be days before he passed, and my son didn't think it mattered if he was clean. I know how hard this time is. I was blessed to have my sons with me those last couple of days. I'm glad your brother came. Know that my thoughts and prayers are with you. Fay

onlyhuman
Posts: 102
Joined: Sep 2009

Shirley
I know its been a steady process for you but we seem to now be in the same situation. We were told on Tuesday that my husband's tumours were inoperable and that he may have up to 8 weeks if he responded positively to the increased dose of steroids. Well he has continued to deteriorate and now they reckon he may have up to 2 weeks if his heart does not fail him in the meantime. Everyday it seems harder for him to swallow. Today he barely got a small pill down and several times even water came back up. He has not eaten since Tuesday (but is on the drip) His breathing was shallow yesterday and very laboured today. Some times he looks at me and seems to understand what I say ...other times he looks at me as if I am a stranger. He is being moved tomorrow from the hospital to a hospice unit and at least then I can stay overnight with him. Last week he was walking and now he can't move his right side at all -- both arm and leg have no sensation. We found out about the new tumours on the 10th and in just 11 days he has gone from just a litle tired to dying. Its hard to get our heads and hearts adjusted to this new reality.

sassy1
Posts: 54
Joined: Oct 2009

I'm sorry to hear that you are in the same situation. I have my husband at home and the hospice now comes every day. My husband Glenn won't even take the pills anymore. I am giving him the liquid morphine and that seems to help his pain. He does not respond to me at all anymore and he just stares into nowhere. I have told him that it is okay for him to go, that I love him and that I will be okay. I just hate to see him the way that he is. I know you understand when I say that, to see a man go from a strong and caring person to what he is now is very heartbreaking. The hardest part in the world is being here alone with him except for the hour that the hospice is here and to know that I will be with him to watch him go. Sometimes I think of it as a blessing but other times I am afraid that I will not be able to handle it. My husband has been on hospice care since August 25th and I guess I should say that I have been lucky to have him this long. It's just been very hard to see him deteriorate. All I can say is that like myself, just take it one minute at a time. I used to say one day but now it has been reduced to minutes. My thoughts are with you.

((HUGS))
Shirley

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grandmafay
Posts: 1612
Joined: Aug 2009

I will keep both of you in my thoughts and prayers. This is such a difficult time. You're right Shirley, it is one minute at a time. I wish there were some wise words to make it easier, but I know there aren't. Take care, Fay

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bluerose
Posts: 1089
Joined: Jul 2009

I am sorry to hear that your husband's condition is worsening but I guess it was inevitable at this stage yet we are just never prepared for it are we? My advice to you would be to continue decorating and planning for Xmas for both of you. Even though you don't think he recognizes you or his surroundings he could well be more aware that you think so leave that Xmas music on just in case and music is so healing all the way around - for you too. Pain seems less with music, I am in chronic pain and when music is on I tend to think about it less, all worries seem just a tad lighter with music is my sense.

I am so glad respite is in for you and you are forcing yourself to go out for a bit - you need that - really good you recognize that.

As far as all the pain meds go, you mentioned that you felt so bad that he is on them all and I understand what you mean by that - just hate to see him have to need all of that, just thank goodness that there are pain relievers that make these kinds of situations easier on everyone. My Grandmother died of the same cancer I had, but that was in 1966 and back then they had very few choices in pain meds and she suffered more than she would have today. So be glad that there are things to help your husband today, in his transition time.

My prayers continue to be with him and you and your entire family and friends who share in this difficult time. You are doing a great job through your grief, doing the best job for both him and you by continuing to carry on with as much normality for him as you can.

Blessings, Bluerose

sassy1
Posts: 54
Joined: Oct 2009

I have just given my husband his medication and changed and cleaned him up for now. I never thought that it would go this far. I feel so bad for Glenn because everytime I move him to change him he yells out in pain. I thought that the hospice was sending someone to help me over the weekend but no one ever came and no one called. Glenn is fighting so hard to stay here and I don't understand why. I've told him that it's okay for him to go and that I've taken care of everything and that I'll be okay. He just doesn't want to let go yet. He can no longer swallow the pills so I give him the liquid morphine every four hours now and I'm afraid to go to sleep that I might not wake up to give him his dose during the night. I don't want him to have to suffer any more pain than he has to. He has always been a fighter and I think he feels that he is letting me down if he goes. Hopefully, the nurse will come to see him tomorrow knowing how bad he was on Friday when she called. My husband was in the local fire company so we always had a scanner to monitor police and fire calls on. I now keep it on just to hear an outside voice. I'm sure that you must get lonely sometimes. I yearn to be able to sit down and have one more conversation with Glenn and have him answser me back in that voice of his. And have his blue eyes look at me knowing that he is actually looking at me. He reminds me of when he was in the hospital and didn't know what was going on. The nurse said that this happens to a lot of elderly people who are confined in a room for a long period of time. I don't know, maybe it's just hope on my part. I can only pray and hope that there is one more time for us to talk together. I have never prayed so much in my life and I have never been a super religious person. I've told Glenn that whether he is here or not, I will still put up a Christmas tree for him. I told him that I would watch for a sign and that I would know it when I see it. He has been the only man I have ever loved in my life and there will never be another. All we ever wanted to do was to live a normal life. You know, have a family and our home and just the normal every day doldrums. Unfortunately, I was never able to have children and we could not afford to adopt. Then this disease came along and it has been hell ever since. We have tried to live a normal life but every time we went for the scans, it was like playing russian roulette. Sorry for rambling on but I am just trying to understand why this has all happened as I'm sure you have asked the same questions. Thank you for being there.
((HUGS))
Shirley

onlyhuman
Posts: 102
Joined: Sep 2009

Shirley
Our lives are so similar at the moment that all I can do is to send you hugs. I didn't think hubby would make it through last night but he came through and then was alert for a whole hour today with lots of smiles for everyone. Then of course he lapsed back into his semi comatose state. The highs and lows are so emotionally draining.
((((((Hugs)))))))
Sangeeta

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grandmafay
Posts: 1612
Joined: Aug 2009

I'm not a super religious person either. I'm not even sure what that is. I do attend church regularly and have served in a number of leadership positions. Our church family was with us every step of the way. We felt their prayers and love. Also, they continue to hold me in their prayers. I do believe that God holds all of us with love. On second thought, maybe I am super religious! Anyway, I am holding both of you and your husbands in my thoughts and prayers. Yes, it is lonely when they are gone, but I am so thankful that my husband is no longer in pain. Maybe that is part of God's plan for me. I know in my heart that my husband has been healed. He is no longer in pain which helps me go on. This is a very hard time for both of you. The waiting and the helplessness is so difficult. Prayers and Hugs, Fay

sassy1
Posts: 54
Joined: Oct 2009

My husband passed on this morning at 1:30am. I had changed and cleaned him up earlier in the evening and he did not respond in pain as he had before. He also stopped breathing at one point and then started again. His breathing was very labored after that and I just sat and held his hand and talked to him and he finally let go. I don't know if it's shock or what but I feel relieved that he has passed. Tell me if that's wrong but I just feel that he is out of pain now and free. I know he is here with me and always will be and the hardest part is yet to come. Now I have so much to do and think about that I don't know where to begin. I'm actually a little tired and am going to try to nap now. He will be in my heart always and forever.

pipwe1's picture
pipwe1
Posts: 53
Joined: Oct 2009

My thoughts and prayers are with you Sassy.....No you are not wrong that you feel relieved that he passed.. I think we all feel some relief that they are no longer in pain... Be kind to yourself and remember that you gave him the best gift that anyone can give.. Your love and support in his final hours

Wendy xxx

Susiebelle
Posts: 15
Joined: Nov 2009

Sassy,

I have been following your story. You have my deepest sympathy. Feeling relief I think is quite normal. It is all mixed in with other things, but it's not a bad thing. It is what love is. Relief that our loved one is finally free from pain. I can tell you what someone who is a counselor once told me: there is nothing more true in the world than your feelings. They are what they are with no rhyme or reason. The best thing you can do is feel them, honor them, and then accept them.

You remain in my prayers,

Susiebelle

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

First let me tell you how sorry I am. Feeling relief may seem wrong. It did to me, but I think it is a universal feeling when a loved one has been sick and in pain. It doesn't change how lost we feel or how lonely. It doesn't mean we love them any less. In fact, I think it shows how much we do love them. The relief is for them. I agree that he is still with you. I feel my husband close to me all the time. Most of all, he helps me laugh at myself. When there was a problem I was stressing over, he used to tell me regularly to, "Let it go." As the official family worrier I used to stress at a lot of little things as well as big things. Now when I start to stress over the little stuff, I think: Yes, dear, I know let it go. I know he's nudging me. Now you will have to take care of all the little things as well as the big things. The next few days will be very busy. My prayers and thought will be with you. Come to this board when you need to. I know it helped me. Fay

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Sigh, Sassy I was so sorry to hear of your husbands passing this morning but I totally know where you are coming from in that relief you felt. Loving someone means many things but one of the key ones is never wanting them to suffer pain or hurt in anyway so thankfully he out of all of that now. That is a great relief for both you and he. I am glad you were with him as you had feared being out of the room when it happened, so you were there in his transition which will be a great comfort to you I am sure. It is so hard to watch someone we love in pain and clearly you knew he wasn't going to recover so having his pain finally over must have been a great relief indeed. We all totally understand that feeling and agree it's a normal response, for sure.

He will always be with you, that's how I feel about the passing of a loved one. The preparations for the funeral will keep you busy but the shock factor will protect you from it all I am sure, you are no doubt in some shock but I think there is a purpose for it - to help people through the rough time to come with all the preparations.

I am so glad you found the strength to let us know. Come back often to talk about what is happening with it all, we are always here for you.

A prayer for you both, him in his new world and you here but linked forever more in love.

Hugs Sassy, Bluerose

onlyhuman
Posts: 102
Joined: Sep 2009

Shirley
I am so sorry for your loss. I completely understand about the relief you feel. Because my husband's deterioration has been so rapid I keep getting asked if I have exhausted all treatment options. Noone else in his family seem to see the pain he is going through just to hang on. I feel helpless not being to share the pain with him. It takes a lot of love to let them go and to accept that what is best for them is more important than what is best for us.
((Hugs))
Sangeeta

sassy1
Posts: 54
Joined: Oct 2009

I completed the final arrangements for Glenn's funeral today. The viewing is Friday night for 2 hours and the fire company will be holding a service in his honor. The funeral is 10am Saturday and his casket and flowers will be transported by a fire truck to the cemetary where the services will be held. When I arrived to make arrangements this morning, I found that the fire company had already contacted them and advised that the bills would be taken care of. I know he must be smiling from ear to ear because he was so proud to be involved in the fire company. He spent 53 years of his life as a volunteer fireman and also 20 years as a fire commissioner. He was an ex firechief and there is nothing that he wouldn't do to help the fire company out. I am just happy to see that they are doing this for him. They called me this evening to advise that it would be an honor to transport him and it brought me to tears. They said that they are there for me for whatever help I may need. I guess this is when you find out what the brotherhood is all about.

Thank you all for the support that you are giving me. It has and is giving me the strength that I need to get through.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

That brought tears to my eyes when I read how the brotherhood stepped up when you needed support the most. You just have to wonder when you see that kind of support why there isn't more of that in this world but let's be thankful for the kindness and caring many, many show at times like these.

Sounds like you have everything in order and you have now then taken one more successful step in the grieving process. I agree that your husband must be smiling down so broadly at how his fire family have come to your aid and will honor his memory with transport. I have seen fire station funerals and transports and they are just so touching. Brave men and women, like your husband - all first responders.

One step at a time, one day at a time, sometimes one minute at a time, but you can do it. We are always here for you.

My prayers continue to be with you and yours. Blessings, Bluerose

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

My husband was in law enforcement (game warden) for 30 years, and was a volunteer fireman for about ten years many years ago. I was surprised and touched by how many firemen, wardens, and park rangers came to his memorial service. Several of them also told stories about him. I, too, felt like my husband was smiling down at us. Take care, get some rest, and keep in touch. Fay

sassy1
Posts: 54
Joined: Oct 2009

My husband's viewing was last night and I thought I was doing pretty well until the fire company and the police came in to pay their respects. The fire company service brought me to tears and I think I was the only one crying. I am trying to be strong but it is getting so hard. Today, I think, the worse is yet to come. It is the funeral services. My family has come out to support me and that makes me very happy. They say that they will all be there for the funeral and Glenn must be smiling down because they are here. I went to the Funeral Home by myself yesterday to sit and be with my husband and I had a good cry at the time. My mother was upset with me that I didn't call someone to go with me but I told her that I am a big girl and I just wanted to spend some time alone with my husband. The Chaplain came this afternoon to discuss my husband and the service with me and he advised that the Hospice services are there for me and if I need anything at all to just call them and they will help me out. Right now, I just don't know which end is up.

pipwe1's picture
pipwe1
Posts: 53
Joined: Oct 2009

Oh Sassy... my thoughts and prayers are with you on this hard day.... be kind to yourself... Glenn is watching over you... loving you and thanking you for your time together.

Wendy

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

No doubt this will be a hard day for you but one step at a time. Try not to look too far ahead and take them as them come, there will doubtlessly be many stages but so far you have done well.

Do listen to the Chaplain who reminded you that Hospice is still there for you, let them help you through your continued grief - they know how to do so in spades.

My prayers are with you on this difficult day ahead, you are truly blessed to have so many family members there to support you. Let them help and get rest when you can. If you have to call your doctor to have a prescription on hand to help you sleep now and again do that, you need your rest and that might just get you over the humps.

Blessings, Bluerose

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