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.
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@funkygrandma59, I am sorry to read of your husband's passing. We can prepare our minds but not our hearts.
You also need to make arrangements to get back some of that free time that was lost when his buddies took him out for activities. If he is mentally competent, see about a senior transit option from the county/province. If he needs a companion, check with family, friends, members of church, VA, and paid home health care aide to provide this service several times a week as well as helping with other caregiving tasks. The goal is to shift some of the caregiving burden off your shoulders to others who are willing and able to help.
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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.
He may be beyond that service but, it is worth looking into.
I do rides for seniors as a volunteer, so check your local non profits and see if they offer anything like that. I can go up to 70 miles and spend 4 hours, free of charge for the recipients.
You sweet lady seriously need some respite. Please take advantage of whatever you can through the VA so that you can get your balance back. If they offer a month, take it.
May God give you strength and guidance during this trying time.
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
See if your local Church Members would help out by doing an outing a week.
Check with family and friends and make up a monthly calendar that they can offer a few hours that day.
Invite a few of his friends over for a book reading, poker, ect.
Think of an activity that he can do at home to keep him occupied like Paint by number pictures, building a model car or airplane, Crossword Puzzles, Regular Puzzels ect.
You don't make any mention of verbal abuse, fight instigating, gaslighting, or being treated like a doormat by him, which is usually what every other caregiver contends with. If it's that hard for you, hire additional help. Get a companion for him who will take him out to the stores and listen to him. Your husband is a retired attorney so affording it is likely to not be an issue. Then take up some activities that you enjoy doing.
You're the second to mention 'retired attorney' to imply wealth and to clarify: he practiced law 1980-1990 and wasn't very successful so he transformed his memorabilia 'hobby' into a business and did okay with it from 1990-2007. Most of the funds not used for survival went into the business, buying inventory and so forth, and when the internet dried up the memorabilia convention market a lot, the business declined; he retired in 2017. There is a huge amount of inventory left over. He's unwilling to sell out just yet.
I ought to have stated 'retired memorabilia mail order self-employed businessman' and shall do so now.
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.
Spouse has a great deal of vitality and bravery after 3x cancer bouts; he enjoys company of men and women and loves to tell stories. Even though he cannot walk more than a few steps, his scooter and walker enable him to get around fairly well, especially when shopping for bargains. A little of his company goes a long way.
I do not know how I would feel if he became involved with another woman. Marriages end every day, and ours might.
Good luck with a difficult decision. Just remember it's okay to care for YOURSELF too.
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.
The changes in anger that I feel at 67 evolved from dealing with the increased driving, incessant talking if I am near, and other changes in his behavior such as picking up garbage from the ground and keeping it if he wishes. For example, a trip to the park may bring home a toy that a child has left behind or a shiny bit of aluminum foil. He is incontinent and refuses to change his Depends once daily unless he has a bowel accident; they leak and overwhelm his pants and seating onto the Chux over the sofa and seats because changing them 1x daily is the absolute minimum for containment. The VA aide occasionally can get him to bathe 2x weekly although mostly it's 1x and he doesn't allow her to see him, just draw the water in the tub and wait outside the door in case of a slip.
I have considered splitting the blanket, selling the home and moving, yes. That still may happen.
My husband and I spend time in different rooms. The first 20 yrs of marriage he worked a 4 to 12 shift. I worked during the day. We saw each other on weekends. I got used to spending my nights in the den. Then he went day shift. To hear the TV he had to have it so loud I couldn't be in the same room. Back to my Den. My DH likes to watch sports too, I don't. It works for us.
But your husband suffers from a Dementia so hard to tell him you need time alone. They are like small children and want attention and are needy. Can u afford Adult daycare? Would give him socialization. Moms DC picked her up, provided breakfast and lunch. They took those who could shop shopping. And brought them back home.
I completely understand "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."
I did this with Mom and felt guilty but couldn't help it. I didn't want to engage in her fantasies. If I showed any interest, even saying hi Mom, it would start something. Neediness I cannot do. She would just talk and talk so I got to where I didn't answer because it made no sense and when I responded, she was on to something else. One time she did say "I guess no one is listening to me". Big guilt there. The best thing I did for her was place her in an AL. It was one floor (I have a split and its 4 floors) shaped like a rectangle. She could walk around and around. Always got her back to her room or common area. At my house, she spent most of her day in the downstairs room where there was a full bath. Coming upstairs for dinner and TV time with us. The AL was so much nicer for her. The aides loved her and she had things going on.
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!
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.