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?
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
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.
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.
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.
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?
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.
Do you have any friends that can help you? Is your husband under hospice? They have been very helpful.
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.
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.
I'm 75, and I've been caregiving my 80 year old husband (stroke survivor) for 5 years at home. He's paralyzed on the left side but is in overall stable health. A year ago I hired an in-home caregiver who comes 5 days a week which slowed my ongoing caregiver burnout to a simmer. I've also legally set everything up to protect our financial assets if/when I can no longer care for him at home. I have some sense of relief that I've finally reached this plateau.
What you've accomplished over the last 20 years is nothing less than impressive. You've navigated your way through the unmapped, hazy maze of dead ends involved with health care in our country. You're resilient...tenacious, and you've managed to maintain the safety net of friends and family too? Not to mention that you've saved your husband's life. Lady, you're an unsung hero in my books.
Wish there was a better "reward" for how brilliantly you've managed things rather than your husband going on hospice care. But getting your husband on hospice care was another good thing that you've done.
You're doing your very best - which is pretty darned heroic. Please stay in touch and let us know how we can help!
Yes I am a strong intelligent woman - no bragging intended :)
Congrats that you set things up legally to protect your assets and yes there is relief that the government is not going take everything away that you and your husband have worked so much for your family.
Sad that most so called civilized countries do not take care of older sick people better.
But please do not think our healthcare is so bad - most people in US do not realize how good our healthcare is - yes we have to work with different providers based on PPOs, HMOS, "OBAMA care" etc and there are problems BUT and a big BUT - my husband and I were born in the UK and lived in Canada until 1991 - if we had not moved to the US my husband would have passed away years ago - my Canadian friends have to wait for months to get MRIs, Scans, Pain clinic appointments, biopsys, etc unless an emergency so dealing with the so called maze of health care here is easy because we can get an MRI or scan or whatever in days instead of months so we can nip things in the bud earlier -example - I had some female procedure done in Canada and was propped up in a vinyl chair half recovering from anesthesia until my husband could pick me up - just saying from first hand experience. Plus Canada lost a lot of really good doctors because the government put in equal billing for all doctors regardless of how good they were. Hence doctors restricted how many patients they could see and because healthcare was "free" (not really because income tax was increased on everyone), people went to doctors for any reason which limited their time with patients who really needed it,
Sorry to go off on a tangent but I am so thankful that the doctors and hospitals etc have helped my husband so much in the past few years and know he would never have got this care in Canada or UK
Maybe, maybe not. He’s languishing at home now. You’re burned out. Why would allowing him care by professional caregivers 24/7 be so horrible? The truth is that you don’t really know that until you try it. Why shouldn’t you put yourself first for a change?
No need to kill yourself so that he can keep petting the dog! Some facilities will allow pets to visit. I took my relative’s cat to visit in the hospital two days post-stroke. A man whose wife was down the hall brought their Yorkie to see his wife. Small town, small hospital and it was Thanksgiving. Nurse said “I didn’t see that!” LOL
Stop assuming what you don’t yet know. I wish you good luck and a long life, which you’re more likely to have if you aren’t burdened by a husband who should have been in professional care a long time ago.
plus I am not burdened by my husband - sorry you got that impression - this is a forum for caregivers to express their feelings and share - not let's just put him or her in a facility to alleviate our burden
With much PT, OT and speech therapy, he did learn to walk again with a brace on his leg, could say simple words and some short sentences, but never could read, write or use his right arm.
He then developed gran mal seizures and many other health issues including vascular dementia for about the last 3 1/2 years of his life.
It was challenging to say the least, but I made sure that I didn't lose myself along the way, and continued to do the things that I enjoyed when I could.
My caregiver support group also was very helpful to me as my husband got well into his dementia. It was so very helpful to be able to share with others that knew exactly what I was going through and didn't judge you if you shared that you lost your patience with your loved one.
I would HIGHLY recommend finding one in your area that actually meets in person, as that will give you a break from your husband, and let you know that you're not alone.
I was able to keep my husband at home until his death in 2020 at the age of 72. It wasn't easy, but we're stronger than we know.
So please make sure that you're getting out without your husband to do some things that you enjoy and remember that you matter too in this equation.
God bless you.
So sorry for what you went through and God bless you too for caring for your husband - so sad for you and your husband to go through things that normally old people go through - sounds like you r ok now although I am sure you miss him - hardest thing about this is seeing their quality of life diminish
Yes I do go out with my friends/neighbors without my husband because I realize I need a break and then I return a nicer person :)