I am just looking for anyone who may have advice on dealing with the stress and heartache of caring for someone with Lewy Body. He was diagnosed about a year ago after about five years of depressed behavior, apathy, mood swings, and the loss of a very good job as an executive IT architect. His boss refused to submit his paperwork for disability and he was terminated.
The financial stress has buckled me. My savings is gone now. My income is insufficient to continue this support and my kids will now have to help out more. Loans made to my ex for the living expenses have not been repaid because of his case dragging on. Now he says he will never repay me. I am beyond devastated, and am at the receiving end of constant verbal abuse, gaslighting, and just the times when he cannot remember what he has said. He then calls me a liar. I am at my wits end with it all. I am also very sick, having had four procedures on my kidneys in six months, with 16 trips to the ER in total for infections and blocked kidneys. I have GI issues that cause the stones, all rooted in my lupus. I have a pacemaker/defibrillator for an arrhythmia that flatlined me for two minutes in 2015. The cause is Long QT Syndrome.
I can now barely take care of myself after a difficult time doing the housework which he refuses to help with. He WILL work on broken appliances and the car, but those things are not everyday things that must be done. My kids work ungodly hours for the money so I don’t expect them to be able to help much given their exhausted each night. 75 hour workweeks for them are the norm and I cannot ask them to do more for their own health and peace of mind.
Advise is gratefully accepted. I just want to crawl into a corner and sleep until next year. I have a therapist and discuss these things with her each week. She knows how heavy this is and has helped me with some coping strategies, but they are very short term and don’t really address the long term issues.
God bless you all and thank you. I know I am not alone but I can be in the same room with him and feel like I am at the North Pole. It’s a deeply lonely time.
Why can't she help you address the long-term issues???????
When did you divorce your ex? (And why did you divorce him, since you are still supporting him?)
"I am also very sick, having had four procedures on my kidneys in six months, with 16 trips to the ER in total for infections and blocked kidneys. I have GI issues that cause the stones, all rooted in my lupus. I have a pacemaker/defibrillator for an arrhythmia that flatlined me for two minutes in 2015. The cause is Long QT Syndrome."
You HAVE to take care of your own health! (Is your therapist telling you how important this is?)
You receive disability payments, and your H has a case ongoing to receive them. Since he doesn't have any money except for $700/month (what is that from?), did you think he would pay you backpayments from his (hopefully) eventual awarding of disability payments?
He must have a lawyer doing his disability. If so, I would ask if there is some way a garnishment can be put on his disability to pay you back. Maybe on the retro money he will receive.
"Loans made to my ex for the living expenses have not been repaid because of his case dragging on. And now he says he will never repay me. "
Are you telling us that this gentleman is your EX-husband?
And that you made him loans for some case he is paying an attorney for regarding his being fired?
And that you put your own savings, despite your many illnesses, into your ex-husband's care?
And now hope his kids will do the same?
I am assuming this home belongs to your ex? And you have chosen to live with him?
I am kind of lost in this.
I think of myself painted into this corner and I wonder what I would do.
You have already been told that you will not be paid your money back. I can only think I would take my income, whatever that might be, and try to rent a tiny quiet room somewhere in someone's home for myself. I honestly cannot imagine what else I COULD do. In my own city SS wouldn't even get you a room. You might have to offer some light baby sitting, housekeeping, elder respite sitting in exchange for housing. Or perhaps house with another senior.
At that point your children (hopefully one of them is POA) could act to get your husband on Medicaid and in placement. You could visit as you WANTED to and as you felt appropriate.
I wish I had some magic wand here, but you are ill and need peace. I cannot imagine another way to get it. I am so sorry.
https://www.ada.gov/
The answer to this situation is for him to file for Social Security Disability Insurance (SSDI). He will receive SSDI since he is permanently disabled.
Call APS explain the situation, and work on getting out.
Your story needs some clarification, for example are you married to the person you are caring for in his home and you also have an ex-husband who owes you $$$?
First things first...put the gas mask on yourself. My mother has Lewy Body Dementia. This beast of a disease fluctuates. Don't expect your loved one to pitch in since most people with this disease cannot follow a sequence of instructions. Even to fold a facecloth looks like a first grader did it. Mother's peripheral vision was the first to go--I immediately had her pull the car over and took the keys. Mother is also on a blood thinner. Forget Warfarin the INR too much can go wrong. Eliquis there are no blood draws.
With the peripheral vision, it's as if the person is wearing scuba diving glasses with no vision on either side.
You need to speak to a Social Worker and fast. If you are NOT married to this person do NOT sign anything. An Elder attorney along with home services will give you a start. Call on the troops--call the Primary Care Doctor and bring all home services--cleaning, CNA, showering, Occupational Therapy, Physical Therapy, Speech Therapy, home blood draw and VNA. The Church people come on Sunday.
Routine, routine, routine...I could do the routine blind folded. A hospital bed, railings around the toilet NOT the booster seat since they cause UTI and white cotton underwear. Install railings in the bathroom and shower chair. Buy good quality shoes, the both of you.
ALL of this can obtain through your health insurance, Durable Medical Equipment. Too much stimulation, such as too much TV can aggravate the symptoms. Music of their era, even a keyboard helps, calms them and they remember the tunes!
In my case, I had mother go one morning a week for 4 hours to a respite program. There is a fee and therapies as I mentioned above can be added to your program through your insurance. I drove Mom to and from but a lot of places provide transportation, continental breakfast and a hot lunch.
Please Note: Facilities do NOT allow the person to lie down. With Lewy Body Dementia the person sleeps a lot. My mother can no longer attend this program. As I write this at 5:11 p.m. mother is already sleeping. I work remotely.
The gray aluminum walkers are passed out upon hospital discharge. I bought mother an Up Walker Lite. Best thing we ever did $595. Gave her freedom.
(1-877) 488-0822
Get a scrip from doctor for the equipment, the Walker may not be covered, this particular style but the best $$$ we ever spent.
With Lewy Body Dementia you have to "control: the symptoms. Keep ahead of it. You need a respite location in the area as a back up plan. I bought "A Caregiver's Guide to Lewy Body Dementia" by Helen Buell Whitworth and James Whitworth. There is a revised edition. You can also get it at your local library.
Learn how to the use the portal so you can see immediate test results, especially blood work.
I will pray for you. I know this is very hard. A Geriatric Neuro-Psych doctor should be part of the team. Your loved one, their brain has patches in it. The Lewy's proteins don't connect the dots.
I hope I was of some help.