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I have been helping my husband for almost 20 years with chronic illnesses probably caused by his lifestyle choices. He is now under hospice care at home with CHF and pressure ulcers that do not heal due to his peripheral neuropathy caused by rheumatoid arthritis. I do have support from family and friends but as you guys probably know they can only offer so much understanding as they do not "walk in our shoes" - any advice on how to handle this "limbo" stage of our lives would be appreciated - I see lot of posts from sons and daughters who are caregivers for their parents but I guess this is a unique situation or maybe not?

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There are many spouses attempting to do care in the home, and unfortunately there are some who lose their own lives attempting to do this at an age when it is not possible to do 24/7. We have seen this. This leaves, of course, the person in need of care, where they should perhaps have been for some time already, in care.
There are so many complications, and if you stay on Forum for any amount of time you will see the problems with division of finances so that there can be some Medicaid and governmental help that doesn't wipe out the finances of the spouse who will progress on soon enough to his/her own needs.
Moreover children come here begging us to convince the caregiving parent to place the other parent as they recognize that what is happening is not sustainable.

Basically I invite you to stay and see what others are doing, have tried. But the truth is that there is VERY LITTLE to NO help in this country where anyone is attempting in home care.

You say that your spouse is suffering from lifestyle choices, and I don't know that you are wrong. There may have been poor choices in lifestyle. Rhematoid arthritis isn't one of them. My stepdaughter has it. This is an autoimmune disease that is almost certainly genetic driven, and no fault of your hubby. The same can be/may be the case with a failing heart (CHF) in age.

I wish there was more to tell you other than to stick around on the forum, talk with others, ask us any specific questions, and contribute to others walking your walk (you will find MANY). And I wish you good luck. The decision for how long you can continue to do this is in your hands. I know I couldn't take it on in home at ANY age for ANY amount of time. We are all different.
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Reply to AlvaDeer
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sherstar 4 min ago
Thank you for your reply

Fortunately our "ducks are in order" re our finances should we need to apply for Medicaid which may be a mute point now since he is under hospice and will probably stay on it until the end. Before we applied for hospice I went to an elder care attorney to start setting up protection of our assets and make sure there was money for his care that the government can't take while I'm still alive and in case I die before him. One silver lining of hospice is he can be at home and although it is hard on me it would be harder to see him languish in a nursing home. Probably that is why spouses are hesitant to place their loved ones in a facility where they are more miserable and the guilt of having to visit. I know when my husband was in a facility only temporarily it was awful to see him so miserable and I dreaded the visits. At least at home he can pet his dog eat what he wants and likes and have friends over to house.

You are right that this country like most "civilized" countries do not cover home care or help for caregivers for our loved ones. Not to talk politics but Trump did say he is going to propose some tax credit for family caregivers - we shall see if he comes through with that and congress agrees - it could at least help a little monetarily but I am not holding my breath :-)

My husband WAS a heavy drinker and several doctors have said that alcohol has caused nerve cell damage that has caused his peripheral neuropathy which when added to his RA causes him much discomfort in his legs, feet and hands. That's what I meant by lifestyle choices. We can handle the RA and CHF but the peripheral neuropathy has robbed him of use of his hands and legs so he needs more care with cutting up food, dressing himself and walking.

Hope your stepdaughter is handling her RA - word of caution - my husband suffered major side effects like infections, sepsis etc and had to be hospitalized several times due to drugs like Remicade so hopefully she is taking meds that treat the condition without bad side effects for her - in my husbands case "the cure" was worse than the disease.

This forum has already helped me and any help I can give makes me feel better too.
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My spouse is 90, I am 79. Past year he was diagnosed with bladder cancer & moderate dementia. No other health issues; heart, diabetes etc. He does have foggy days but mostly understands the issues. I worked f/t until 6 months ago. Stopped to care for him. It's to much being 24hr care taker. His adult children do not step up, I have asked. I am at a loss.
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sherstar 41 min ago
Sorry to hear that you are not getting support from his children - we have a very small family - our son, daughter-in-law and 10 year old granddaughter. They have offered to help me but they have a life and live an hour away. They call nearly every day to talk which is helpful to me and sometimes come over to cook and spend time with us.

Do you have any friends that can help you? Is your husband under hospice? They have been very helpful.
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I was not in my 70's when I was doing "full time" caregiving. I was in my 50-60's when the proverbial poop hit the fan.
What I can tell you is that I doubt that I could do all that I did now that I am in my 70's. (and it pains me to say that and this is probably the 2nd time I have admitted that)
I can tell you what you should do.
Find yourself.
You are not the same person you were 20 years ago, 10 years ago or even a year ago.
Find a way for you to channel what you have learned, a passion and share that.
If you don't have caregivers that come in and give you a break it is high time that you have help. Even 2 days a week for 6 or so hours will be a mini vacation for you, and maybe him as well. Hospice can help with some of that. A Medicare requirement is that Hospice has Volunteers. A Volunteer can come sit with your husband and you can get out. Typically 1 time a week and the maximum time would be about 4 hours. They can do no "hands on care" and they can not physically feed a person or give meds. Most Hospice will try to "fit" a Volunteer with a patient so if your husband loves classical music they would find a Volunteer that also likes classical music, if he likes sports they will find a Volunteer that likes sports.
Find you again and become engaged with something. Honestly being involved with something when my Husband was on Hospice truly helped me when he died. Volunteering gave me a reason to get up, take a shower, get dressed and go out the door otherwise the time right after his death would have been a LOT more difficult. I still volunteer and it does keep me busy.

Your situation is not unique what is unique is it is you. Your reactions, mental ability to deal is yours alone. I have figured out that "we" are a lot stronger than we think we are. You have to direct the strength so that is working for you not against you. You get much further, faster swimming with the current than against it. That is not giving up or giving in it is finding the right path.
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Anxietynacy 4 hours ago
Grandma that was beautiful ❤️
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I'm helping my wife through this.

One thing that may be helpful for you is to fill out your profile here. That will help you get better answers. Plus, it will help you organize your thoughts, feelings and story. Finding the right words describing your situation is freeing in itself.
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sherstar 59 min ago
Thank you for your reply

Both of us are "planners" and now we of course can't plan anything except day by day which is hard to get used to. My husband has so many chronic conditions plus the CHF so his wounds don't heal and he suffers from repeat infections. He has no feeling in his hands or feet and walks with a walker in the house - wheelchair when out. Hospice has been a great help with aides to help him in shower and nurses to treat his wounds and infections. But I have to help him with day to day activities like cutting up his food and dressing him. I am not complaining about that since I have taken care of the household even when he was not so bad . It's just heart wrenching to see his lack of quality of life :-(. At least he is home and not languishing in a nursing home.

This forum has already helped me by being able to talk to people who are going through the same thing.

Feel free to reach out to me if you want to talk - we can help each other. Is your wife under hospice?
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Sherstar, welcome to are forum, there are many here taking care of spouses.

I think we as children have much more to complain about than the caregivers taking care of there spouses.

I take care of my mom, but much of the reason I'm here is because my husband is 12 years older than me, so I'm trying to educate myself as much as I can.

I'm very sorry for everything you are going through, it has to be very hard doing this day in day out.
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Jayne44 4 hours ago
Plz explain why children have it harder than spouses? You no doubt have your support from your immediate family. As well as a life away from the care you are providing. Something spouses often do not have due to the isolation of the 24hr care needed.
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Sherstar, we have many posters who are caring for their spouse, often husband and quite often in their 70s. As your DH has hospice, do you know how long his life is expected to stay in this ‘limbo’? What advice are you looking for – day care options, in home care options, behavior problems, facility placement, etc etc etc.

You are a new poster so you may not have found how much information there is on the site. If you click on ‘caregiving topics’ under ‘resources’ at the top of the screen, you will get an alphabet list to click on. That will give you articles and old discussions about a very wide range of issues. Alternatively you can click on the magnifying glass at the top right of the screen, enter any term that seems relevant, and find every old thread that contains those words. That may give you ideas, of even just a way to be a bit clearer about what advice might be helpful. Best wishes, Margaret
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sherstar 1 hour ago
Thank you for your reply,

I am not looking for any options except a place I guess to vent and talk to people going through same thing - this forum can help me and perhaps I can help other members .

To answer your question re my husband - I did not realize that hospice was available for him. He has had over 7 stays in the hospital + rehab stays this year alone - he has had cellulitis several times and osteomyelitis (infection of the bone) due to his bad circulation and the fact his wounds do not heal like a healthy person. He has an ICD (internal defibrillator) because he only has 20% of heart function. For these reasons we were able to get him into hospice before he got really bad. He at least is at home and not languishing in a nursing home :-(. The saddest thing is seeing his lack of quality of life. We don't know how long he has since he is still eating and fairly alert. So hence both of us in limbo.
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