My husband and I are in a beautiful and loving relationship, which I am so thankful for. We have quite an age difference 80/45 but laugh a lot and love each other immensely. Due to a shotty hip replacement, subsequent revision and worsening health issues I have been his only caregiver for over 2 years. My husband has 9 children one of which is a special needs adult that we help Care for but not full time. All the children know dad’s health is not good, that he can no longer walk, and do any IDL’s or ADL’s. I’ve asked one child directly for help just sitting with Dad once a month, no response, and called out one child for being so exploitive (we pay over 700.00 a month in student loans for a 30yr old who never finished their education) not to mention other co-signed loans that we find out are not being paid. This child seems to care less and won’t pick up the loans even though they can afford it. Which had caused us to be unable to get things we need. We have tried home health for homemaker chores and sometimes they show and sometimes they don’t can’t get a solid homemaker person to come in and so can’t utilize respite because we can’t get to know anyone and feel safe leaving my husband alone with them. Assisted living is out of the question, nursing home is out of the question and husband is unwilling to do inpatient respite at skilled nursing due to traumatic experiences regarding hospitalizations / skilled nursing previously. Just at a loss and want to continue to live together as we love each other and enjoy each other. Haven’t been able to sleep in same bed for a year and living in about a 300sqft space giving bed baths and using bedside commode due to immobility and no accessible bedroom or bathroom. I love my husband dearly and begrudge him nothing. I just can’t maintain anymore, the house is upside down can’t keep up with chores can’t even take care of myself anymore. It’s gotten very bad. I’m getting to be pretty non functional and it’s taking its toll. I am on meds and see a counselor. No handicapped accessible housing where we live. I’m trying so hard but I know my best isn’t good enough and I am getting sicker by the day mentally and physically. Even basic chores are insurmountable these days. I’m embarrassed and ashamed and want to do better but I’m empty. I just feel like I need to be still and rest and to be responsible for no one but me in order for me to get well and be able to carry on. My husband is cognitively fine it’s predominantly pain, mobility issues and subsequent health problems affecting everything. He requires 24 hour care. I always hear you have to take care of yourself first which frustrates me because when it’s only you there is no way to care for yourself because there is no one to step in (was a single Mom for over 20 years with children with behavioral issues and no break there either; just seems like everything has caught up with me). Would appreciate any productive non judgements feedback. My desire is to live a peaceful beautiful life with my husband where we have the tools we need to make life better for both of us in an affordable way. Things are not sustainable as they are and I’m just looking for doable solutions that will keep us living together as husband and wife and being able to balance it all. I appreciate your time and feedback. Thank you
First of all, you don't have to feel embarrassed or ashamed about anything - when you're totally exhausted there's no way you have energy or enthusiasm for anything but the most essential activities. Most people on this thread have been in the same situation and understand. Who cares if the house isn't perfect - Quentin Crisp famously said that the dust stops getting any deeper after four years!
Second, I think you know in your heart of hearts what you have to do - you HAVE to get some respite before you collapse, and you have to stop paying for what sounds to me like a lazy careless irresponsible 30-year-old adult who is perfectly capable of getting off their ass and financing their own loans. And if they can't, it is their problem and not yours. Think how many hours of respite care and housework you could pay someone else for with that 700 a month! I now get four hours of respite from a care agency on one afternoon a week, and although it's not really enough it has changed my outlook on life. Its four hours of not having to worry, of catching up on some sleep or just getting out of the house for a walk and some me-time. It refreshes the soul and enables you to regain some perspective on life. A few hours should not be too hard on your husband - its really just having someone to sit with him while you are asleep or out.
This is just a start - I'm sure other people on this site will be able to advise on ways of getting the family together to realise that they cannot just dump everything on you until you collapse, and expect you to support them as well. And you may need some legal advice if your names are also on the loans.
My heart goes out to you. Your relationship with your husband sounds wonderful, and you need the rest and relaxation to be able to fully enjoy it.
One practical idea that occurred to me and that you could perhaps share with your stepchildren is this - if you collapse through burnout, THEY will have to take over the care of their father, either looking after him themselves or finding nursing accommodation for him and stumping up some or all of the costs, which will have a greater impact on them than providing some respite hours for you. Helping to keep you healthy and happy is in their own interests.
Did your husband by any chance serve in Vietnam? If so, have you registered him with the VA for basic and some level of extended medical assistance?
I don't have any good suggestions at this time; the problem of one person providing care while others, at whatever level in the family, remain uninvolved is one which is addressed frequently here.
But you might contact one of his doctors and ask for home care; that would at least give you a home health aide for some limited tasks.
Or you might ask one of his doctors about Palliative Care, for long term, chronic conditions. It's not hospice care, but it's my understanding that it's a kind of spin off from hospice, but with benefits that hospice doesn't provide.
Paid for by Medicare, I've been told by one of our doctors that it will provide a visiting physician, nurse, possible therapy, but I don't recall what else.
I've been researching this for my father and found that it's still relatively new, so much so that the companies I contacted all provide different levels of care. So you have to do some research to get the best of what's available.
You might want to start researching palliative care companies in your area, contact them, and see what's available.
Still no luck finding reliable home care?
I understand how you are feeling, so well. It's not lack of love, it's called exhaustion!
At the moment I have 2 people helping me for a total of 5 hours, every day.
I can't think of any other way I could survive, honestly, and like you, I love my mom with all my heart.
As the others here said, the priority now is not the loan, it's you, and your husband.
With much support and sympathy.