I was a caregiver for my husband, who had multiple myeloma, for 12 years.
Last October I lost him to a heart attack, he died in a hospital room 90 miles away from me, alone. I am finding it hard to forgive myself for not being there, for not doing more.
A few months before Gerry passed I was diagnosed with Stage 4 Lymphoma, and at the time of his death I was undergoing some pretty severe chemo and couldn't physically raise my head from my pillow. At that same time he was experiencing pullmonary symptoms that alarmed us, so we contacted a cardiologist at the Mayo Clinic (where he had been undergoing treatments for Multiple Myeloma)It seemed like a good decision at the time, but on reflection I wish we would have found a cardiologist locally, in St. Paul, MN, which has many excellent hospitals.As I write this, even as I think it, I KNOW how silly it sounds. Of course I couldn't do more than I was able at the time.But the guilt of being a caregiver and feeling you haven't done enough can be overwhelming.
I'm currently recovering from Lymphoma. Walking is very difficult as I have peripheral neuropathy in both legs (numb from my toes to my waist) and I will always deal with severe pain in my back from several cracked vertibrae caused by a large tumor in my spine.Thanks for listening.
Hi Modeknit welcome to the community.
It is often amazing how trying to put our emotions into words helps to clarify things. Together you made a difficult but totally sensible decision about his treatment and nobody can know what would have happened if a different decision had been made.
One thing is sure you stood by him for 12 years and I am sure he was not alone, your spirit would have been beside him.
In the UK we have a couple of really good charities who support the bereaved but I am not sure of support that might be available to you in the US.
Hope your recovery continues as well as possible.
Please, don't torture yourself any more. As Steve said, you were beside him through thick and thin, I have no doubt in my mind that he knew how much you loved him and knew that you were there in thought and spirit, just as we who read your post are with you. You have done everything you could and more. And although you know it yourself it's always good when people confirm it, and I am sure everyone does. As care givers I think we all suffer from guilt, my partner isn't eating and I feel guilty watching him loose weight, but I know I have contacted everyone who can help. I really hope that you can relax and take time for you and feel proud of the love and care you gave to your husband xx
Thank you - and best of luck to your husband, I hope he begins gaining weight soon. It's so worrying to see someone wasting, I hope he thinks of some dishes he really, really wants to eat, to do your heart and his heart good.
Thank you!I'm fortunate that there's a therapist who works with my cancer center near my home, but I think I am entering the period when being part of a grief group might be helpful.
Thank you for thinking of us, unfortunately he always has an excuse not to eat whatever is offered. The doctors have tried different meal supplements /replacements which are fine for a couple of days and then there is a reason why they are not suitable. Things are too dry, tasteless, taste awful, the tin is too big,, he doesn't like milk heated in a microwave, too rich, anything and everything. I have told him it doesn't matter how much of any thing he eats as long ashe eats something. He used to love my cooking and food in general. He used to be a big man. Some days I cope well with it other days I feel angry and often just so very, very sad. I do hope you get the support you think may help you, sorry to go on about my problems. Wishing you well and keep posting if it's helpful xx
When Bill was like this with food I just made myself food as usual asked him what he would like and if he didnt want anything then I tried to just show it didnt bother me .He eventually did eat again but it was on his own terms .Now when he isnt well and dosent eat I just accept it .I know one day he will not want food anymore but that is his choice. When he was waiting for his oesphagectomy he had a feeding peg he absolutely hated that so if at some point he cant eat he wont tolerate one of those . Its hard for you as cooking for our loved ones is such a joy As is going out for a meal which we dont do anymore its just too difficult as Bill cant have normal size portions anymore and he dosent like having smaller portions ordered . So many changes. really hard to accept sometimes .You look after yourself you have been so kind to many people on here myself included . Lots of hugs xx
Thanks granny sue, you are so right, cooking for others is such a joy, that has been taken, along with , like you, going out for food.. I have threatened Ken with a naso gastric tube and peg feeding as I know he would absolutely hate that. It was just to try to get him to eat as he thinks the doctors have a magic cure to help him eat and I would have thought that if they did they would have used it by now. Don't know weather to suggest steroids again or if they could increase his ammitryptaline. They said last time I asked that they didn't feel steroids would help.
I try to reply to people who post here because although just writing things down is helpful it is always nice, I think, to have your posts acknowledged. Sometimes we can help a lot but can just say, I hear you, and you are doing well. Sometimes I wonder if I write too much but I think if I can make someone feel a bit better then it helps me too. I have had such lovely support from you and others. Thankyou for your hugs, they are always welcome. Hope things are as good as they can be and even better love pam
Hi,When my mother first came home from 3months in hospital after a brain haemorrhage it was really hard.She had been vomiting for so long and had lost her sense of taste and smell.Mum was so thin and really wasn't eating much.It did worry me a great deal but I just cooked whatever she fancied,sometimes in the early hours of the morning.I suppose it was easier for us as there were no diet restrictions, but it was tough going at times.On one occasion my partner spent ages picking the bones out of a supposedly boneless piece of cod for her,only to find that mum had changed her mind about eating it.The cats enjoyed it instead.Now I have cancer and am not looking after mum at present, I miss her and feel guilty she is stuck in a home.Best wishes to you all Jane x
Hi Jane, you have been a wonderful help to your mum. You have absolutely nothing to feel guilty for. You must make sure that you look after yourself before you can look after anyone else. I do hope that your treatments are going well,. I hope I don't sound like a sergeant major, but I feel so sad when you say you feel guilty. Wishing you all good things, love pam x
Hi Pam,Thank you so much for your lovely message.I haven't had any treatment yet.I'm supposed to be having my bladder removed soon.I'm hoping that eventually I can get back to caring again,I do miss looking after mum.Love Jane X
I'd like to jump in on the question of eating out, it's a pity that you are deprived from eating out because Bill doesn't like having smaller meals perhaps you could pass on to him from me that there is no shame in asking for a smaller meal in restaurants or ordering from the children's menu, if available.
I ordered recently off the Beefeater children's menu without a problem in fact I got the impression that it was a normal occurrence.
It does have its drawbacks in MacDonalds when you ask for a Happy meal and you get a toy to take home or if the restaurant hands out drawing paper and pencils to everyone who orders off the children's menu, now that's embarrassing.
I have a card that I can show to restaurants explaining why I need to order a smaller meal.
My mother used to always order small meals without any problem and I have a friend who also does it so it's not an unusual request.
Just a suggestion to all in the same position have you tried a divided plate where you can put a small portion of the meal into the different compartments it may give the impression that it's a small meal and as the components are separate, if one is not wanted it won't have "contaminated" the other items, you could have the potatoes, vegetable and meat in the different sections and if you get a larger plate you might even get the jelly and ice cream on the plate separately. Just a suggestion.
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If I can add to the above if you're having trouble getting your partners to eat for any reason From our friends in the US of A
comes a selection of smoothies that might appeal to your partners, you could make a full portion but only serve half a cup and put the other half in the fridge for another day.
Most of the fruits and vegetables are available in the frozen food cabinets which reduces waste.
It might be a good idea if we all started to share recipes that we've tried and found successful.
I recently posted in another group the things you can do with drinks like Fortisip and other similar products they can be mixed with other foods items to make puddings, sauces and many other dishes including ice cream and jelly!
Hi Jane, wishing a speedy recovery recovery from your oncoming surgery and really hope you get back to caring for mum when you are strong enough. I am sure she knows how much you miss caring for her. Be kind to yourself though as you are the main person who makes it all happen! Keep in touch if you would like to, let us know how you are, and have a moan if necessary. I would love to hear from you. Love pam xx
Thank you so much Pam,I really appreciate the support.Love Jane xx
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