Burnout or burnout detour?
Spouse stopped driving in March 2020. For a while, friends drove him to favorite activities such as shopping for food and books, generally combined in trips lasting 3 hrs 2x weekly. That was great and the additional 9 hrs weekly of VA's caregiver was a godsend in in-home care added in June. Then in August the friends quit driving and I drive app. 7 hours weekly around town to these activities, which I do not share. I wait in the car with a book. Generally, it's the same shops over and over.
Spouse has a scooter with carrier, which I unload from the back of the car and bring to the car door. I load purchases and unload when arriving home. He is a backseat driver and nearly incessant talker; he's a retired attorney.
What I feel lately is that he really got used to me being around him more since August and he wants more of me. I've spent much time in big cities and I've taken to treating him like a street person: avoiding eye contact and non committal answers such as "that's nice" before leaving the room as quickly as I can. I clench my fists when I hear him call me from another room or hear his rollator from upstairs. I hate the sound of my own name. Now he wants to read stories to me daily; I plan to limit this to 15 minutes each daily session. I have a backyard "she shed" which I could not live without.
The avoidance technique works and any other hints would be appreciated.
Is there some sort of transport service your Hubby qualifies for? Also 'a new friend' (ie an Aide) to spend a little time each week with? Reading, TV etc.
It sounds like he likes to be busy, going out & persuing his interests. It seems reasonable he do that... but not reasonable that you are there alongside for absolutely everything at the expense of any life/interests/peace & quiet for yourself.
I'm watching this with my parents. She needs entertaining & to be doing something but needs help to do so. He needs to have some time to do what he wants too. He has to get creative to arrange things or it would be her wants & whims 100% of the day.
You have set up your house in a way that works financially, and changing it is probably hard to deal with. However your current position is also hard to deal with, and I couldn’t handle what you are describing either. You can't call your soul your own! Divorce is becoming a thinkable option, and of course that will overturn the living arrangements completely. It will also involve you being very blunt about what you are unhappy with, so there is nothing much to lose in laying it on the line right now.
Does VA have a social worker? If your husband is capable of the discussion, a third person could be a big help in looking at immediate behavior changes or alternative living options.
I based my opinion of his mental state of dementia not because of memory, because we all have glitches, but his behavior. Most troubling was Nov. 4, 2020 when he refused to leave the car after fumes poured from the vents and I pulled over and swiftly brought his scooter to his door. He kept repeating "well I'm not getting out." Another issue is his trusting strangers; he was within 1 minute of reporting the total SS number (he'd already given the last 4) to a scammer. I got on the line just in time.
The VA has lots of resources, so thanks for bringing that up about the social worker. Spouse resists anything like psychological treatment; just after VA treatment began in 1998, he lost it with a doctor, who referred him to Anger Management class. He went readily to the appointment until he found out what it was and then stomped away. He's uninterested in the soul-baring, I believe. The behavior with the car incident in that he didn't recognize danger bothers me the most. The incontinence and other issues are awful to be around, but the Nov. 4th incident is the worst.
I also purchased several dvds of vintage musicals I know she enjoyed, like The King and I, My Fair Lady, Music Man, Oklahoma, etc. This now keeps her occupied for the whole movie. It's helpful that the plots don't require much mentally and the topics are light and happy. I wish you success in figuring out some solutions!
Good luck with a difficult decision. Just remember it's okay to care for YOURSELF too.
A lot of that pressure was pandemic related, because like you, I was "it" and grandma got used to that. Now thank God I'm back at work and away from the situation. Look into all the options the VA has to offer and use them well, that's what I say. That, and your local office of the aging, and/or an adult day care center.
Hugs! Hang in there. It's been a rough year for us caregivers, but we are getting to the end of this awful tunnel sure enough.
He has traveled for years and treats our home like a hotel and me like a maid. Just now, he was on a conference call and reminded his boss he's retiring the day after I turn 65. July.
I have no idea what he'll do--all he really likes is to sleep.
Your hubby is a different animal--would he go to a Sr Center? A man in those places is like a slice of cake, I kid you not. My mom goes (well, went, it's shut down right now) and there are like 10 women for every 1 man. And the men LOVE it b/c even though they aren't necessarily searching for companionship, the are searching for someone who has not heard their stories 1000 times.
You can find drivers. Perhaps a specialized Uber since Dh needs his scooter. I don't know---a college kid who needs some bucks, try to get a cadre of drivers. If he is out of the house 3-4 hours per day and YOU are not the one taking him, would that help? Also, the handicapped buses, if your city has those. Mine does and I know they come pick up several men everyday for outings. Probably mostly to malls, would be my guess.
I GET the feelings of wanting to divorce---you have HAD it. I will never divorce my DH, I do love him, but he is very, very difficult to live with. I also have had many years of short and long term caring for him after illnesses and such. When I had cancer, he did NOT reciprocate the care. He traveled and was not 'there' for me. I am still working on forgiving him for abandoning me.
I think last case would be moving him to a VA home. He may be absolutely at home there--other men in his same age group, same interests, new sets of ears. IDK, they can be wonderful for some people, awful for others.
Burnout is real, it's exhausting, it's something that one good night's sleep doesn't cure and it colors all the days with a grey crayon. I am going back to therapy as soon as I get my covid shot and working with my therapist on my part in the retirement. I am so NOT happy about it.
As far as your son--the legacy we leave our kids is hopefully one of having a good character, a good life and a love for others. Money is nice, but it shouldn't be the reason you don't live comfortably now. I made sure, in our long term financial planning, that there are funds to pay for LTC for him and keep me living comfortably. My kids all make plenty of money and don't NEED inheritances. They just don't want either of us to ever live with THEM.
Good Luck, Pronker. Take a beat, the holidays are stressful and not in good ways. Don't make any serious decisions until next month.
As for being read to each day. Stop. Tell him to read to himself and you'll read it later. I get absolutely NOTHING out of someone reading to me. It will send me right into the next orbit. I swear, after caregiving for the past 5 yrs, I'd rather wipe a rear end than have someone read to me. Don't sit through 15 minutes of it each day - draw a line in that pile of dirt.
Your hubby is still conversational and you are doing a great deal while he's in the home to care for him that you have to do. Don't add on the things you really don't have to do at this point. Once you start something, you probably won't get to reverse it. Save your energy for the day he actually requires more.
/rather wipe a rear end/ This was an appropriate remark because yesterday he lost control and left a 6 foot trail of poop into the bathroom that escaped the Depends. He's without 1/3 of his large intestine from a 1999 operation and life is difficult for him.
Happy holidays, pronker