My husband had a stroke 16yrs ago, he can do a lot of things for himself but won't. I have to tell him he needs to brush teeth, shower, pick up his messes. I stopped him from driving after he had an accident. He rear ended a car that he did not notice car was stopped.
I was diagnosed with stage 4 lung cancer 5yrs ago and given 21 months, immuno therapy has helped get rid of cancer in lungs. However, it has started to pop up in other places and I have started chemo. He expects me to continue to still do for him all he needs, cooking, cleaning, laundry, Dr's visits. Every time I think I have communicated to him what things I need him to do to help out, it's like I'm saying it for the first time even though he says ok I will do. I think because he has not seen me get really sick he thinks nothing is wrong. His family, who all live out of this state call often and ask how he is doing. When I express my frustration to them they just say we are glad he has you and we will talk to him about it. They are like him in the thinking, they seem to think I'm fine.
I don't think he could take care of himself if I die before him and I don't know when I should get into that with his relatives.
Who is there in your own area to help, to act as POA for you, as second POA for your husband? Is all paperwork in place?
I am so happy for the good treatment you are clearly getting. But it can get like whack-a-mole where you are treating one thing, it comes into control and another pops up. It will all get exhausting.
Have you ever thought, while you have the strength to address this, of selling all assets and moving in WITH you husband to ALF????? There were several couples where my brother was, and they had two rooms, did very well, with some to activities and others in room, with help for doctor appointments, and etc. Much of this depends upon whether you have assets enough in a home to make the money to support you in a decent facility, but it is worth considering I think.
As for your husband’s failure to do things, I suspect it could be cognitive problems. It sounds much like my mom who can no longer do simple things like dressing without step by step direction as she’s doing it. She simply does not know. Tho I find this very hard to understand and do get frustrated with her.
In your case, you just don’t have the energy to do everything for him while you are facing serious health issues. If you were to die before him, something would have to change for him. Look for those solutions now.
Wishing you some help and peace.
I would make him a list in big type, what he needs to do daily for himself. Laminate it or put it in Plastic of some kind that you can tape to the bathroom or bedroom mirror. Everyday tell him to go and do what it says.
Meantime, tell the relatives that you have to deal with your own health and to please call your husband if they want to see how he’s doing because you’re not doing well. Leave it at that. Stop letting them placate themselves through you. Just bow out graciously. Tell them you’re too tired to talk and give him the phone or have him answer it. Just do what needs to be done for him and tell him you love him but you can no longer do the things on the list for him. He has to do them himself. Somehow you need to set a new normal, one that at least puts you on equal footing with him.
I’m not saying to abandon him in any way, but don’t complain if you are choosing to do what he himself can do. Nothing will change if you do that and only time will tell how this will all play out. I’m sure you are aware that your life is a miracle in that you are still able to manage day to day care of yourself and your husband. But don’t ignore the fact that it can all change quickly. Take time for you. Enjoy the simple things in life and let go of anything that doesn’t really matter. My thoughts and prayers are with you.
He's not fine & you're not fine. Get DH into the doctor for a full cognitive work up; he's had a stroke and dementia/cognitive impairment is something that often follows. Once you know what you're dealing with, you'll know what he is and is not capable of doing. Then you hire the help you need or you both go into Assisted Living. I'm not sure what you expect from 'the relatives' in terms of care or what they can do for you. I'd expect nothing, if it were me. Because when others, even family members, ask us how we're doing, all they want to hear is "Oh we're fine, thanks, and you?" All the rest of the reality goes in one ear & out the other as they tend to their OWN issues.
By all means DO let them know that your cancer has returned, that your husband has X diagnosis from his doctor, and that you do not feel him capable of living alone were you to pass before he does. But again, expecting them to stand up and care for him may be a bit of a long shot.
Have you thought of selling the house & both of you moving into an ALF where mostly everything is done for you? Meals are served, housekeeping is included, and YOU can get help with whatever issues YOU face, w/o relying on DH for much of anything but companionship. Something to think about.
I'm so sorry that you're in such a situation. May God give you the strength and courage you need to face all that lies ahead. Sending you a big hug.
If you do not already have in place power of attorney, medical power of attorney and other directives, such as Medicare, now is the time to find a relative or friend or attorney who will take these responsibilities on for your husband. and you. You also probably want to place your assets in a trust to protect both you and your husband. You will need an estate attorney for all of these matters. I would also talk to the attorney about the spend down of your assets to qualify for Medicaid. You don’t want to leave yourself or your husband financially vulnerable while dealing with your husband’s challenges and your cancer. Your local Area Agency on Aging and Alzheimer’s Association‘s can help you find these resources as well as give you guidance on living opportunities for you. Bringing in outside help can get very expensive very quickly, which is why assisted-living residences are found everywhere. ALs are typically much more cost-effective, especially with a couple sharing a room than living at home with hired help. Depending on the stage of your husband‘s dementia, you may need to place him in a memory care residence. Make sure to check out campuses with both assisted living and memory care in case his dementia advances and the two of you can’t live in the same unit. This way he will be proximate to you and you will be able to visit him as you go through your chemo and other medical treatments. Also consider adult foster care homes. These are residences that are set up for six or less residents. These homes specialize in elder care and can even specialize in memory care. Some states even have AFCs with nursing licenses.
Now is the time to be candid with your relatives and find out if anyone is interested in helping you out and to what capabilities.. This is a big ask. Let me repeat that – this is a big ask. I would speak with your estate attorney first and with the Alzheimer’s Association before asking your family how they can help. You want to have a good understanding of the kind of request you are making of your family members and you want to convey to them that you realize what you are asking for and need a lot of help. Work together with your family to get some plans in place. Again, let me emphasize, that you need a lot of help. This is not something you can do on your own.
This is a very tough situation and my heart goes out to you. I would also find a support group for yourself if you can. I took care of both of my parents with dementia and went through a life-threatening medical condition simultaneously, so I do have a deep understanding of your situation. Best of luck to you.
So sorry you have cancer. Could he have some dementia going on? And that's why he can't remember to do things?
Good luck.
His family isn't obligated to step up so you will need to have a plan B, which may be transitioning him into AL. This doesn't need to be permanent but you have no idea what your coming cancer battle will entail. You will need help for YOU and you shouldn't/can't be spending energy worrying about the aid who didn't show up that day. Or you contract an agency who will worry about scheduling. Perhaps the threat of a diminishing inheritance may motivate his children. If none of this is affordable you should contact social services for your county to get an in-home assessment to see what services they can provide. May you receive the help you need and have a full recovery!
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