Is anyone else caring for husband with lung cancer?

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Can't see how getting care in would help. He is getting weaker every day and the hospice nurse comes once a week just for support but I dont get any real help and I cant imagine getting care in would be very useful as they cant be here all the time. He is in a wheelchair mostly and goes to the toilet a lot now. I am trying to persuade him to agree to get a carer in to wash and shave him. A nice Filipino male I hope! I thought I might get an electric bed as he cant get up in bed easily but he resists any change! I thought the hospice would be more help but they dont have respite or anything really useful I have found out. Perhaps when things get worse?!! ( I am in the UK).

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rosmarin , I'm not certain how it works in the UK, but I do know that few hospice organizations have people to be with the care receiver all of the time.

The problem seems to be with your husband refusing change. Likely, hospice would get him a hospital bed which makes things easier all around if he'd accept that. You could hire an in-home caregiver for the hours that you need if he'd accept that care.

I'm so sorry that you have to fight this alone. I do think that hospice is doing what they can but they won't force care on someone who doesn't want it. As your husband declines, maybe he'll stop fighting help and you can get more assistance. Communicate well with the nurse who comes. She or he has likely seen it all.

Update us when you can. We'd like to know how you are doing.
Carol
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First and foremost. Take care of yourself, if you don't you won't be able to take care of him.
I cared for my father as he died from Lung Cancer. One thing I didn't know at the time (1974 and my first family death) was the cancer metastasized into his brain. He couldn't make good decisions. My heart goes out to you, I was lucky because my mother watched him at night and slept during the day, I had children and I would watch him during the day and still get housework done, etc. He wanted to die at home and we were able to arrange for him to die at my house. Hospice was just coming into the US and we didn't have it. I have used Hospice several times since then and found all of them wonderful. If the cancer is indeed in his brain you may just have to do whatever you need to. Also, in case you didn't know this, Lung Cancer can also migrate to the bones causing extreme pain. There is nothing you can do about him getting weaker, part of the disease. I didn't realize how bad Daddy's brain was until he sat up in bed to shave himself and he would take a swipe on his face with the razor and "dip it into the sink". I had a bowl there and he never touched it. He was going on muscle memory or whatever it was. He was like a father and mother to me and it was horrible, before it was over with I was praying for him to die.

If I had it to do over I wouldn't have tried to "get" him to eat when he didn't feel like it. His bowels were paralyzed and I had to dig the fecal matter out.

My suggestion, let him stay in bed longer. Say something like, "I'll get you up in just a minute as soon as I have (reason)". Don't try to get him up. Let him lay there if he is comfortable. Just wait and transition to a hospital bed. If he is adamant about his bed and it is too low, raise the bed. You may have to just tell him this is how it is. If you have traditional roles, this will be hard for you to be assertive, but it will save your back. See first sentence about taking care of yourself. I was lucky that Dad was ok with a hospital bed.

If he can, have him use a urinal so he doesn't have to get up so often, if you had a hospital bed he can just hang it on the side. Get a potty chair and put it by the bed if that will work.

Above all, make sure he has his financial affairs in order. My father didn't have a will, we got one. He had to "retire" or mom wouldn't have had a pension, we took care of that. Within a week after doing the financials he couldn't sign his name. If they had POAs at that time I didn't know about them. I did ask him where he wanted to be buried, he wanted to be in a small cemetery near his home that I didn't even know existed. I was able to get him there. This is just touching the heartbreak and agony.

A lot of my friends gave me advice that just didn't work. I would advise you to talk to the social worker from hospice for help, they know what they are doing. They are not "killing your husband", they are there to make his passage easier.

One girlfriend wanted me to put him in a hospital because she didn't think my kids who were about 9 and 11 should see him dying. I asked them if they would feel better if Grandpa went to the hospital. They said no, they wouldn't be able to see him if he left the house. Back in those days kids weren't allowed in the hospital. They were a lot of company for him. They would do their homework in his room and watch TV "with" him. Even after 42 years I am going to cry when I relate this. One morning they stopped by his bed to kiss him before they left for school, he said, "Don't go to school, stay home and we will go fishing". He was bedridden and paralyzed on one side.

Since he is on hospice, he is going to die, I am so sorry you are going through this, if you go to church, get help from your pastor. Get all the help you can, have someone else do housework or just let it go. My heart is with you.
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I am in a similar situation in the USA. I went to a good Psychiatrist who prescribed me medication for the anxiety and depression.I also see a Psychologist every few weeks. Both helped tremendously and advised me to take time for myself. I now go out once a month to get a massage or manicure. I had quite a frank discussion with my husband. His mind is clear so we were able to have a frank discussion. He's scared to death and admitted it is difficult to loose his independence. Controlling every little thing he can is his way of hanging onto the life he knew. I had to explain that we are in this together and we should work to make things less difficult for each other. Changing is not giving up. It's helping someone he loves. Be understanding but make the changes that are necessary. Otherwise you'll find yourself becoming angry at him. We are both happier now that we try to support each other through this insidious disease.
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Toarin my heart goes out to you and I will pray for peace and comfort for you and your husband. I just wanted to say when I felt a hospital bed would be best for my mom I just called doctor and mrdicare arranged for delivery. Neither mom nor dad thought the bed was necessary but I explained that it was more for me and my bad back and would be easier to get mom in and out of bed. Put hospital bed beside another bed so I could still sleep in the same room. I am not sure how it works in the UK but if you are not paying out of pocket for the bed, I would just get it and see how it goes. Y mom never moved so I never used the rails on the bed. This is a very hard journey that you are on but one of the most rewarding. 🙏😇
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Hospice should be able to send in a "take-charge" nurse to come in and explain to him that he IS getting a hospital bed, that he is entitled to it because he is a tax payer, or any nonsense reason to override his objections. Men, especially older ones, always say no almost as a reflex. I'm not saying to really bully him, but to treat him more like a cranky child who is being resistant for no reason. Of course you need to be more tactful with an adult.

Also, be sure he is getting enough pain medication.
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I am sorry for your loss, and you are right that he is no longer suffering. I have a refrigerator magnet that says, "Friends are the family we choose for ourselves." I believe that is true.
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Is the main goal to keep him comfortable as he lives out these last days? Is there a hospice care FACILITY in your city? The facility is round-the-clock hospice support that is comfortable, quiet and has staff checking in on him hourly, at least. You could then start your own recovery.
There is no heroic measures to revive the patient. Bless you in getting the care you need!!
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Glad to hear you are getting equipment to help and hopefully more moral support! Spend your time with your husband everything else can wait. Wishing you peace and comfort.
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Hospice sends in help you ask for usually. My dad had aides come in several times a week besides the nurse. Reach out to them and ask for additional help. You need the support.
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Your friends are your family and I am glad you have people you love to support you in this sad time in your life. You are right, your husband is no longer suffering and is at peace. I know what it was like to have my heart broken but also to feel relief at the same time, although mine was for my mom, I can't even pretend to know how you must feel losing your husband. Hope you find some peace and comfort.
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