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Essie, I'm sorry you are having to deal with all that. It's a lot for sure. Probably too much right? It sounds like it's time to place your husband in the appropriate facility, where he will receive the 24/7 care he needs, and where you can get back to just being his wife. You know that he will only continue to get worse, and if you're already "overwhelmed, tired, angry and filled with grief," that too will only get worse. Have your family help you start looking for the best place for your husband to go to. If you don't, you will be in the statistics of the caregiver dying before the one being cared for. Please take care of yourself.
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EssieS Feb 2021
Dear Grandma,
You sound like a survivor of the wars too. I'm so glad I found you, or you found me--I don't know which. I do need to be more 'just his wife' again. He misses me, I think, and he hates to see me working so hard at my age. We were poised to finally be off the clock, to start enjoying, then came a big surgery for him, a recurrence of his lymphoma, covid, and now this. All in the space of 18 months. It's bitter.

Now that I've found him a good doctor, and we have better insurance, I'm going to see how things look once they settle. I realize that because of the vicissitudes of this disease, there will be moment to moment adjustments. I don't like that, but I hope I can adapt.

Thank you for writing me. I haven't got many outlets to vent, and it so helps to know you understand. --Essie
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Essie, welcome! You are among friends here.

First off, have you talked to your husband's doctor about the hallucinations? In PD, sometimes the hallucinations are a side effect from the meds, meaning that the meds may need reducing, or an antipsychotic added to the "cocktail". Please read this article:

https://www.healthline.com/health/parkinsons-and-hallucinations#hallucinations

Second, you sound so overwhelmed and close to burnout! It is good that you have supportive family, but sometimes, talking to a professional can really help you sort out and prioritize what needs to be done when. Can you find yourself a social worker/therapist to talk to? Keeping YOU well is an important priority in the management of your husband's disease.

About the out of network bills; please call the doctors and talk to them about the fact that you didn't realize you were out of network. Ask for a reduction; if there is a hospital network involved, talk to the Social Work department and find out about what financial resources are available for folks without insurance.

As to buying another place, have you considered looking at supportive living places, like Assisted Living facilities? As your husband declines, it would be nice to have help right outside the door.

(((((((hugs))))))))) and I hope you'll update us on your progress.
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EssieS Feb 2021
Good Morning, Barb! Thank you for the welcome. I finally feel among friends who actually understand. Since a lot of you are older, it helps to know I'm with people who understand what it's like to lose someone by slow degrees, someone you've loved since you were a girl.

I took the link and read the article you sent. It was scary but informative, but I'm a believer that if you don't know the truth, you can't help yourself. I've also felt close to burnout because when this began, we were coming off several really bad years. So yesterday, after reading all these posts, I did ask for more help from my sons and they agreed. I feel better for having asked. I did have a therapist, but when I changed insurances, I lost her, and because of complications with my family of origin, I've gone through most of my life without friends. This whole mess feels like too much of a load to discuss with the one friend I do have.

Yesterday, one of my sons said the same thing about the bills that you did and I think he's even going to do the calling to the billing department. Both my sons have asked if I'd like them to 'take a night shift' periodically, so I can rest. I still can't get through a sentence or a doctor's appointment without crying, but this all can only help me, and that will help Bill.

Thank you so much for all you said.
--Essie
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Essie, you are, I assume, given the length of your marriage, at least in your 7th decade. I think it is too much to expect yourself to do hands on 24/7 care of someone you are losing, someone who is slipping away. Unfortunately, many drugs that help with hallucination in these cases make the mobility worse, and some that help mobility make hallucinations worse.
You have now added to the mix huge life change, selling your home and moving to another area.
As to the change in supplemental insurance you will need, and etc. yes, it all has to be done, but done not on one day, done a day at a time. Have you assigned POA to any family member willing to help you with transportation and so on? Do you have assets in cash from the sale of your home or was there no profit in the sale? Are there assets you can access in terms of insurance policies with cash value and etc?
The truth is your husband needs placement, or will very soon. That will mean division of assets so as to protect your own assets in the marriage for your own care ongoing. But you cannot conceivably continue to do it all without help. There will have to be an elder law attorney--while there be certain you assign POA for yourself in case of it being needed by family. Are you POA for husband? If not you will need physician's statement to file in court to be conservator for him.
There is a lot on your place. Try to make diaries, lists and keep track of things done and things remaining to do. I am certain the burden of this is heavy and I am certain you do not know where to begin. So it is to begin. I guess finding out how to get supplemental coverage for the area you are living in now.
Keep careful records of day you became a resident in your own state, day you did this and that. Keep file folders, one for each subject you discussed and the many more coming.
I am so sorry. I cannot imagine how overwhelmed you must feel. My heart goes out to you. I hope you will keep us updated as you move slow step by step.
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EssieS Feb 2021
Dear Alva,
Thank you for all the advice and especially, the compassion I hear in everyone here. I'm 72 and my husband is 78, so we've done a lot of what you suggest, as we striven to protect each other and our heirs. We do both have good wills and POAs in place and I've kept diaries for 25 years. I write everything down--to the point of tedium!

Everything you said about the drugs is so true! The side effects are awful, and I sometimes wonder if the cure isn't treating him worse than the disease was. I thought PD was slower than this, but it all went so fast, and that's part of the reason I'm having trouble coping. At times, I feel like a widow already--seeing this happen to such a vital, happy man is so hard. Not even medical professionals always know that this disease destroys more than the person who has it.

Thank you so much for your kind welcome, Alva. I hope your own situation improves. --Essie
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