Early in May my husband suffered a serious stroke. He spent about five weeks in the neuro ICU and the hospital, then the acute rehab facility. It's been almost five weeks since he was discharged and sent home with a hospital bed and a wheelchair. Despite what I've heard and read about social workers and discharge meetings with doctors, case managers, etc., we were sent home with very little, if any support. He is confined to bed since he can't use his left side, stand on his own, etc. I thought he had insurance through his job, but apparently he neglected to enroll in it, so we're at the mercy of New Jersey Medicaid, for which he'll be turned down because, as a married couple, my assets are also his - which puts him over the maximum allowed by Medicaid.
Thankfully a good friend was able to get us some in-home care (therapy and home health), but it's temporary and about to come to an end. After that I don't know what we'll do. I've begun to pay out of pocket for some extra care during the week so I can take care of other things and hopefully keep working at my temp job. I had to take a short leave because I was going almost 24 hours a day, caring for him, cooking, feeding him, dealing with his ostomy, etc., in addition to trying to work an 8-hour day.
I've also been trying to navigate the ins and outs of the insurance system, short-term disability, long-term disability, leave of absence from his job... it seems endless and no sooner do I think I've provided everything these people say they need than they tell me they need still more.
He's lost a lot of weight and can't or won't eat much that I try to give him. In the rehab he was getting three hours of therapy a day. Now it's barely four hours a week and I despair of him ever really recovering. I've been sober for over 38 years but in these last weeks I have really wanted a drink! I cry because he seems to be suffering so, and because I'm exhausted. I'm 73 with a bad back, so I'm really unable to transfer him to a wheelchair or even just get him sitting up on my own. I think sometimes I cry as much out of anger as despair. We were supposed to be going to Europe at the end of this month, but that ain't gonna happen!
People tell me to be sure to take care of myself, but it's easier said than done. I have to be diligent about my antidepressants because I can really go to a dark place otherwise.
This is not my first time taking care of someone seriously ill, and I guess I think on some level I should know how to do all this. I see myself being a caretaker for the rest of my life. This is not where I expected to be at this stage of life, and I beat myself up regularly because I didn't work hard enough to get there. Sometimes I feel like I'm being punished but no one will tell me what I've done wrong. As if life isn't scary enough.
I feel paralyzed and overwhelmed and I just wonder what to do next. Any thoughts or suggestions much appreciated.
Once in home care assistance ends I cant see you being able to do the care he needs and taking care of yourself. Something has to give.
Only you know your physical limitations. There are no easy or good solutions.
Is his condition temporary and will 1000% improve with therapy or is this his new normal?
And you have every right to be angry because this situation is partly your husband's fault for not signing up for proper insurance through his work.
Surviving a stroke sounds more like a curse rather than a blessing.
"I think a big part of the problem is that we did NOT have family meetings at the rehab when they discharged him. Nor is there a social worker or guidance of any kind..."
I am SO very sorry this was your experience. You were not prepared at all! I find this so lacking in care - but I wonder if Covid has changed the circumstances (as it has in so many places).
"Little by little I’m putting it together".
I hear strength in your writing tone here 💪👍
Stroke is a health crises.
Beyond your control.
Coming home without the necessary support &/or equipment extended the crises stage.
But now you are picking yourself up from the shock. Dusting yourself off, finding out what supports exist, what you can control, what can be done.
This hopefully will include financial help, PT for DH, OT for equipment advice, aging care agencies for advise on home-care staff.
You & your DH are now *Stroke Survivors*.
(I dislike the terms suffered a stroke or stroke victim). I include you both as while HE had the stroke, you both are effected by it. While the future is not yet certain - in fact maybe not even if your DH can remain at home - hopefully the crises part moves into the problem solving part.
Keep reaching out for support & advice. Keep speaking up.
If you are going to need be getting your husband up for an extended time, look into a Hoyer lift and other equipment to help with the physical accommodations your husband may need. Five weeks is a short time in Stroke Rehab terms. Contact the Social Services Department of your Hospital Group or the Alzheimer's Association or Senior Services in your Community to look for resources for equipment, activities for recovering stroke patients, caregiver support groups and so on. It will not happen all at once, but you may find some tips or ideas that will improve your situation.
Meanwhile if you can keep your husband moving and doing whatever exercises or PT you can devise, you may actually see some improvements in his functioning.
Don't dwell on the things you cannot do right now or the trips you cannot take. Your job right now is taking care of your husband and hunting for resources and tools to help you do that. Do that job well.
I also Agree with the post from DupedWife. The PACE program is a very good option for many people. Most area in NJ are covered. You can find more information on the NJ state web site: https://www.state.nj.us/humanservices/doas/services/pace/
and then you can call New Jersey Division of Aging Services toll-free at 1-800-792-8820
To participate in PACE, an individual must be 55 years of age or older, require nursing home level of care but be able to live safely in the community at time of enrollment with the services of PACE, and reside in the service area of a PACE organization. PACE participants may dis-enroll from the program at any time and for any reason and those with Medicare or Medicaid who dis-enroll will be assisted in returning to their former health care coverage.
PACE provides its participants with all services covered by Medicare and Medicaid, without the limitations normally imposed by these programs. It also provides any other services deemed necessary by the interdisciplinary team that would allow program participants to remain in the community. Services provided by PACE include, but are not limited to, primary care (including doctor, dental and nursing services), prescription drugs, adult day health care, home and personal care services, nutrition services, and hospital and nursing home care if and when needed. Transportation to and from the center and all off-site medical appointments is also provided.
PACE is sometimes a little to all encompassing for some people... they supply your primary care physician and all healthcare is within their confines but it works for a lot of people.
You mentioned that you "thought he had insurance through his job, but apparently he neglected to enroll in it". Which type of insurance were you referring to (medical, long-term care, etc.)?
It is surprising that you didn't know about his insurance status -- do you both have separate SELF ONLY policies instead SELF+ONE?
How long have you both been married?
I'm glad you will be seeing an Elder Care attorney to help you sort thru the maze of all this Medicaid paperwork before you. Just try to take things one day at time, one hour at a time when things get tough. When I'm particularly upset, I ask myself this question: What is wrong at this very moment? Most times, the answer is nothing. That helps get me thru a moment that feels like a crisis.
I pray that God helps you thru all this, and that you come out the other side intact and even stronger than you already are. Sending you a hug this evening, and a prayer for strength.
I live in New Jersey also, and I just received an email in my in-box from my congressman which mentioned PACE, which I had never heard of before. I researched it and I found out that it is a program offered to the elderly and disabled New Jersey residents regardless of whether they are receiving Medicaid or Medicare. I am urging you to go to nj.gov and type in “PACE” in the search box then call them to see if you are in one of the areas where this program is administered. Perhaps you will qualify for this program, and I believe you would not incur any expense once you are enrolled.
Wishing you good luck in finding the help you need.
it happens to us. If your husband is in bed and safe, clean and fed you are doing a great job.
I live in Canada so different health care, I know if something happens to me, my husband will be taken to care facility immediately. There are also places if I am unable he can go for weeks, months to NH for respite care.
Also, apart from financial affairs, at the beginning when your life is turned upside down, doing too much in terms of analyzing is detrimental, creates too many regrets.
I am not saying it is easy to accept it, but, detach yourself little bit, work, hobbies. Beating yourself up and feeling being punished accomplish nothing just more frustration.
I know, as caregiver to husband with Parkinson’s, we have to readjust and I am just beg my retirement, which supposed to be wonderful, living in different parts of the world.
Sometimes I feel too like screaming, because, I did nothing to create this disease. I can ask why me? And answer is why not me?
I have, however, created plan A and B and even C, for life if I am realistically maybe facing more and have to accept, adapt and by professional advise detach myself.
Do this for YOU!
I second the recommendation for AA, there are many in-person and I online programs now:
https://www.aa.org/find-aa/north-america
Stay hopeful that this is a transition and not the final outcome - and you can only do so much. There are other support groups too: https://www.nj211.org/resource-search/taxonomy/PN-8100.1400/_/1
I also would go to your County Social Services and apply for Social Security disability.* His work should have disability insurance. If not, the State of NJ does and he paid into it thru his payroll deductions. If his work has a decent HR, they should be able to help you.
*Apply now for SSD. Your husband at 60 may have an easier time getting it. You want to apply before he is able to collect at age 62 getting 75% of his 100% he would get at 67. If he is turned down, then u get a SS lawyer. They do not get paid unless ur husband wins. He will receive a lump sum from the time he applied to the time he starts receiving it. From that lump sum, the lawyer gets paid by SS.
I just did the disability thing with my Gson thru the State. He got it in one lump sum. Make sure anything you send disability is sent certified mail. We had a problem with them saying a form did not get sent. It did. I then sent everything I had sent before saying I had no idea what form they didn't receive but this is everything that was sent immediately after receiving. Buy sending certified, I had proof of delivery they could not contest. Yes, its all a lot if work. But worth it when u finally get the money. I did this during COVID in 2020/21. Hopefully things are going more smoothly with these depts now.
P.S. I live 45 min SW of you.
However excess time & energy are probably luxuries you currently don't have.
Was it fully explaimed at the family meetings just how much physical care your DH would need? (ie 24/7 care)
Many caregivers have 'heard' but are still determined to try. Is that what happened? Or were you pushed hard to try home before other options were considered?
I am guessing the idea of how it would be when your DH came home is different to the reality.
Regardless of whether you volunteered or were pushed, what matters now is a plan that works.
If 24/7 care at home is just not working, it is time to speak up. Book an appointment with his medical team or primary Doctor & start the process of finding plan B.
I was happy to discover during my EC consult that my retirement benefits (401k, 403b and 457 plans) are not considered when applying for Medicaid in NYS. The income derived is.
I believe your best first move would be to visit a certified eldercare attorney to find out how to get your husband qualified gor Medicaid in NJ.
Is he not eligible for Medicare, since I assume he's over 65?
And..because it is me asking...is he a Veteran?
The reason I ask if he is a Veteran is that the VA may be able to provide some help. And due to changes in the past couple of years spouses are now able to get paid to care for the Veteran.
And depending on where and when he served the VA may be able to provide a little help or a LOT! To find out contact your local Veterans Assistance Commission. Their services are free.
If he has other medical concerns he may qualify for Hospice. (Don't worry about "6 months or fewer")
With Hospice you would get the equipment that you need to care for him. And you would get help that would come in and help you each week.
Even without Hospice you can ask the doctor to order the equipment. A Sit to Stand will help you a lot but he needs to be able to support himself somewhat, there is a harness that will hold him but he needs to be able to support some weight. If he can't do that then you need a Hoyer Lift.
You should also search out 2 groups.
A Stroke Support Group might help you a lot.
And...AA you need that support now as well.
A phone call to your doctor to schedule an appointment. Your doctor needs to know the stress you are under now. This will effect your mental and physical health.