Overwhelmed

tlecroy

I am 57 year old wife with a 72 year old husband with many health issues. I work full time along with being a full time caregiver. My husband is ESRD on dialysis and until last week I was doing his hemo dialysis at home. I finally took something off my plate but up at 4 now to be at dialysis clinic by 5:45am three days a week. I go to work and then 4 hours later I take an early lunch to pick him up, take him home and back to work for 4-5 more hours. He is leagally blind and does not drive so all doctor appointments fall on me. He has lower extremity vascular issues. He also has heart issues, urology issues and foot issues and he is mostly wheelchair bound. We began seeing a neurologist for cognitive issues to include confusion, hallucinations and combativeness. Some testing was done (EEG and brain MRI) but he now thinks they want to put him away so he won't go back. Now I can't get a diagnosis. He's been under some type anesthesia over 30 times in the last 3 1/2 years which exacerbates the neurological issues.

He had to have a follow up vascular procedure today from one last Monday because his toes are turning black. We got home today and he sat out in the truck for 2 hours because it wasn't his house. He wanted to go home. Finally got him in the house. He gets so confused and hallucinates more and more. He confuses me with his ex-wife or thinks were are both in the picture and they haven't been married for over 30 years.

So sorry for the ramble but not sure how to get him help without a diagnosis or what steps I should take. Work is my sanity plus I have to work. I am the sole provider. Also, I don't have the funds to get help that's not covered by insurance. Any suggestions will be greatly appreciated. Through this group I finally feel like I'm not alone.

Jeanne C.

I'm sorry you're going through this, but you've found a great forum and everyone will help with advice.

I went through something similar with regard to my husband resisting going to the doctor, paranoid that they were going to commit him. After months of struggling, he ended up hospitalized for two weeks while they ran tests and got him on meds. It took a bit, but the meds made a huge difference in paranoid behavior, anxiety, aggression, and delusions.

Do you have POA and other documents in place? I strongly recommend talking to a CELA and learning about long-term care options in your state.

Take care.

LJCHR

I am so sorry for your challenges you are facing with your DH. You came to a good place for advice - I joined in March of this year and the experience, knowledge and support I have received is outstanding. One thing I've learned is that "fiblets" are okay. Maybe you could tell him you're going somewhere different than Neurologist and get him to an appointment that way. I think you're correct that the 30 anesthesia's in 3 1/2 years probably has exacerbated the issue.

Everyone's circumstances are different but "the same".

Try to stay strong (do we have a choice?)

gampiano

Dear tlecroy,

Your story is overwhelming, and I am so sorry and sad for you and your husband. The schedule and burdens that you are carrying are unsustainable and you must be exhausted. To have all these medical issues is one thing, but as we in this community know, adding dementia to the mix poses a whole other set of problems.

Does your husband stay home alone when you are at work? Does he have partial vision?

Do you have any help at all, someone who can give you a break for a few hours? If he is in a wheelchair maybe all you would need is a sitter who could stay with him while you get a few hours to yourself. You need this, for your mental and physical health. Two hours would cost about sixty dollars where I live. Can you afford that, even once a week? When my husband was alive, i signed up for Meals On Wheels, there is no charge for this service , only an optional donation. With the money i saved using them, I paid for a caregiver. Its so worth it. They also take dietary requirements and restrictions into account, by the way,

What is your legal situation? Do you have a POA? Health Care Proxy? If not, you need them asap. Many people on this forum will recommend a CELA for you to consult with.

Based on your information, I don't know whether hospice would be something you would consider, but I can tell you, that they have amazing resources that would be helpful , respite support, home health aides, visiting nurse, 24 hour on call nurse, equipment and supplies, and much more. many people are on the program for a year or more. Jimmy Carter is a good example.It might be worth investigating.

Regarding a diagnosis, when we were in that phase, the diagnosis was made after a virtual neuro psych evaluation , done at home. You would need to be present of course. Maybe inquire if this is possible.

One more thing... Is it possible to get a medical transport for him at least one way to dialysis appointments? we have this in our community, its called "the Lift", and it accomodates wheel chair patients. If he gets wheeled into the van, locked in place, then when he comes home he can't refuse to get out of the truck. You would just need to meet him at your house and wouldn't have to deal with the obstinate behavior.

I hope some of this is helpful. Even if its just one idea.

Sending you strength and praying you get a break,

Maureen

M1

I wondered about a hospice evaluation too. You may face a difficult decision at some point about continuing dialysis. Im sorry you're facing this but you have come to a good place.

Denise1847

Some great advice has already been given. I would just add that if you consult a CLEA and then he may be able to enter a skilled nursing facility with Medicare/Medicaid funding. It sounds like he needs extensive care. I am amazed that you are so strong and are able to keep your schedule going. I pray you find relief very soon. Please keep us posted.

tlecroy

The comments have given me a lot of good information. I appreciate you all. It was nice to just vent with people in the same situation. Oh, did I mention that my mom is undiagnosed but we know she is going through the same thing. Hers is mostly a memory issue.