seeking guidance from other caregivers

Discussion Board Forums Supportive, Palliative & Hospice Care seeking guidance from other caregivers

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  • #18393
    carol58
    Spectator

    Oh boy Marian, that’s a million dollar question. First, do you have a good family doctor locally that is yours and yours alone that you can talk to? He or she can often give suggestions and point you in good directions. Sometimes, it helps to talk to a therapist. I think Hospice offers a lot of counseling programs. This doesn’t mean your loved one is about to die, just help for those of us trying to hold everything together. If I’m not mistaken, I don’t think you have to pay at Hospice or very little. Also, if you need help with antidepressants or nerve/anxiety medication, your doctor should be a great source for that. You need a caring professional that you can talk about your life situation with that can offer ways to manage it. We can’t remain positive all the time and that’s okay. No, the cancer itself is not happening to us, but the effects of it threaten to eat us up too. As a caregiver you also have the weight of the world on your shoulders and there is help out there to lighten the load. You have to do this for yourself to keep your sanity. I was at the receiving end of some bad moods last summer with Charlie, but for some reason haven’t had a recurrence of that. Thank God! That drained and wore me out more than anything I think. I think I gave him a few “tough love” talks. He was mad, but got over it and after a while, I think I just wore him down with loving him so much, he just couldn’t resist anymore. Please keep us updated. Don’t let your loved one’s cancer take your life. Strength and prayers for you.

    Carol

    #18392
    lainy
    Spectator

    Oh boy oh boy, its not easy is it Marion? I get a release as I work from the house as a travel consultant so 6 hours a day I am at my desk but can still do what I need to do in the house. Sometimes I just want to scream. After trying to communicate with 4 doctors and getting them to communicate with each other and then sometimes I do feel myself getting a tad short with Teddy. We are both short enough already…in stature. I get in the car, drive to the store and scream a little in the car, it really helps. I also started a girls night out. There are 8 of us and we go out one night a month taking turns as hostess. I try to busy myself in the yard. It all works good for awhile and that is the break we need. This morning I decided to go for a massage. The hard part is doing some things and not feeling guilty about it!!! If we don’t take care of ourselves who will take care of our most precious ones?

    #18391
    jeffg
    Member

    Marian… click on Patient Support above and then click on Ask Dr. Giles. He has a few excellent post on how to deal /cope with exactly what your talking about. It’s a bummpy road no matter how you look at it. However, Dr. Giles gives you some really good pointers. Share your emotions, talk and find a place to justlet it flow out. Check out Dr. Giles section for starters.

    God Give you Strength!
    Jeff G.

    #18390
    marian
    Spectator

    Does anyone have suggestions on how to cope as a caregiver: depression, feeling burned out, and being at the receiving end of moodiness from the one you are caring for. In other words how to remain positive in the face of it all.

    #18389
    pderat
    Member

    Thanks Edith. I will give that a try. He had a dr appt yesterday and did shower before that. Puts me in my place I guess! ( Just kidding)

    #18388
    edith
    Member

    Patrice-My husband did suffer depression and it was his oncologist who talked him into getting help. You might want to talk to your oncologist about it. As of wanting to shave, I just let him grow his beard or there were times when I offered to shave him (bought him electric shaver), telling him that he didn’t look presentable anymore for his “cute” oncologist. Turning the heater up in the bathroom, getting his change of clothes ready might get your husband moving.

    Take care, Edith

    #18387
    pderat
    Member

    Dear Jeff and Carol- Thanks so much for your posts. It is could to know I am not out of mind with my approach with Dave. I was feeling selfish in wanting not to sleep with him when he stinks! But your right I have to take care of me too. I will talk with him again about this. I love him so much and just can’t stand seeing him this way. Thanks for your love and support.
    Patrice

    #18386
    carol58
    Spectator

    Patrice, seems nothing is ever easy with this cancer! I’ve experienced the same with Charlie – depression, not getting up all day, anger. Oh my gosh, when I brought up a nice hot shower or an antidepressant, he went nuts. I guess they see something helpful like a shower stool as another sign of their failing and us being the closest to them, they naturally take it out on us. So far, the only thing that has worked for us is when I do the “tough love” thing on him where I’m super firm with him about not giving up, etc. Usually he’ll be mad and sulk for a day after it, then get up and get going again. I think it makes him mad, but then he realizes it’s true. I hope this helps and I pray for you and Dave. I KNOW this is very draining for you too. Here comes a big hug for you.

    Carol

    #18385
    jeffg
    Member

    Dear Patrice, Iv’e been there and done that and I still do for a few days at a time. Then my wife valerie will ask me if I’m going to shave today or make a comment a hot shower will make you feel more relaxed and comfortable or she’lll offer to run me a hot bubble bath. I’ve always put it quite blunt and simple and I guess this post shouldn’t be any different. Not shaving or bathing is a classic for someone depressed and angry. I can’t blame him, It is the way he feels and really doesn’t have much control over it. Now that it is winter and less day light depression can even get worse. I always say to myself I can’t be bothered or I’m not going out who cares? When I was down and out for the count during some of my chemo treatments, my wife would give me a nice warm sponge bath. It was great. I’m rambling Patrice, but the bottom line is medication for depression may or may not help. It is up to him. But depressed or not, dying or not I will not subject my loved ones too my raunchy Body odor. I have to much respect and dignity to allow myself to smell like trash and subject others to it. You can’t fight with him about it ,but you can be honest and tell Dave You love him dearly and would love to cuddle and hold you close but just cant’. Let him know you will be more than happy to sponge bathe him if it come s to that. Also let him about getting scabbies he surely don’t want to be sratching and itching also let him know it affects others who live or visit the house. Patrice Dave’s self- esteem is little to none. I don’t know your family dynamics Patrice but as much as it hurts I would sleep alone unless he keeps clean, You don’t need to come down sick. I would expect my wife to do the same if I ever decide to do that to her. I guess I would stand my grounds and put clean sheets on the bed and let him know ahead of time he will sponge bath at least if he don’t want to shower, grow the beard if you want but wash it. I guess maybe a little comprimising is in order. It comes down to you can’t really force him to do anything. It’s Dave himself who has to say to himself , this #$@% disease ! and then decide if it is going to control his dignity and respect of others. I think if he understands he can still make some decisions and this mean disease will never have total control regardless of the outcome. I wish there was a magic wand Patrice. Darn, he has to feel useful and loved and still has some control. Dave, I’m in the same boat but I’ll be #$%#$%%$# if this disease is going to rape me of my integrity and dignity! I opologize if I put it on to heavy but it’s how I truly feel. I truley understand the ins and outs of depression but also understand our minds are more powerful than we realize! Wheter we go tomorrow or next year I’d rather leave spelling of Irish Springs than week old trash.
    God Bless You both, It’s Tough!
    Jeff G.
    P.S. Patrice .. You know after I read this post , I said to myself I was pretty outspoken and cruel. Please believe me the best intentions only were in my mind plus a little anger as Dave did’t ask for this anymore than I did. Please remind hind him he is fighting a battle of a bigger war that we still do have the hope of winning.

    #974
    pderat
    Member

    Does anyone have a suggestion about helping your loved one with the depression side of cancer. Dave will not discuss it with me and gets angry when I bring up the idea of getting treatment for his well-earned depression. He is feeling very poorly this past couple of weeks and has stopped bathing regularly. I have suggested a shower stool so he can sit to shower but he says it is not his weakness but just a lack of desire to shower, shave, etc. I don’t know how to help him and as much as I love him I can’t bear how his personal hygiene has failed. Any suggestions would be greatly appreciated. Patrice

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