My wife had 2 strokes. 1 in Dec of 15, and another in the spring of 2016. She had 3 seizures, so 5 ER runs. She stayed in a home for 4 months and I've had her at home these 2 years. On top of it she has both apraxia and aphasia. The stroke took out her speech and right side. I obviously have to work. Thank God though as my 2 days off are awful taxing. I am wore down. I am exhausted. None of her family etc. has helped ... whatsoever. It's all me. I run a small business. I can't put her on Medicaid as from what I understand they could eventually assume my paid for home and business. My son is in it with me and I hoped to hand it to him. She is 56 and I am 53. Today is our 33rd anniversary and she doesn't know it. She has a lot of trouble comprehending. Dr's said she isn't going to get any better. We've have 5 different therapists of speech, physical and occupational therapy. No improvement since the first couple weeks. She's always had a temper and a short fuse and that's only inflamed more now with all this. I get through each day. But I am at a loss of what to do and wonder when my health will begin failing me as this is just utterly exhausting and she is just so rough to handle mentally. I feel so bad for and I have busted my ass trying to take care of her. I have to do 99% for her. I bathe, dress, undress her, you name it. I don't know. All I know is I am wondering if I've been running down a road I am just not capable of taking on. 2 years. 2 years facing I don't know ahead of me. Another 2, 5, 10 years of this? OMG, I can't imagine how I'd be able to last. I don't have anyone else to ask. Sorry for dumping, but I need some input and advice please.
I know right now you feel paralyzed but you must not let the situation decide itself. Take control of this like you took control of everything else in your life. OK? You can do this!
I have to say tho one of them scared me more than helped me but he was just out for the $$$. That's why as with anything else.....interview a few of them before choosing. If you decide after the consult you are not ready to hire one you are at least armed with more info. There is no obligation....don't let them bully you. We caregivers must take "back our power."
Take lots of notes!
Keep us posted.......
I'm just struggling with this:
I'm 53. Assuming I live a typical 75 years I have 5-10 decently fit years. The next 10 the health will continue to slow etc.
We never did much in our 33 years and man would it be nice to live a little. I'm not talking about hitting bars and chasing girls. I'd just like to actually go on a vacation, do some hobbies I couldn't do before etc.
But then the other voice says to me that ... she's your wife. So she's got this situation and now you're going to stick her in a home and go enjoy life on your own?
But we watched her mother go through this. Think they're superwoman and don't take their blood pressure pills and gain a bunch of weight and ... surprise, your health tanks.
I begged her to not let this happen. I watched her dad push her around i a hcair and take care of her.
She didn't listen. So now, I'm in those shoes, but much earlier than they were and already much longer. The dr says she can still live a full life. ??? So... I could have 10-20 years of this? OMG! Shoot me.
This isn't how I wanted to go out. I'm sure this isn't her plan either, but I literally begged her to take better care of herself. Nope.
I miss seeing my kids, my grandkids, getting away, talking to people who can talk back, ... living basically.
So I'm torn with "suck it up and do your job" and take care of her" or you've done 2 years, you gotta turn her over to people who can take care of her and live.
I need to be sure of this move. I have to face her family and our children knowing I didn't jump ship.
One day I'm going to stand before the Lord and I don't want to be asked why I bailed on her. That's what kept me faithful for 33 years and caring for her the last 2. Part of me wants to talk to my mother and children and ask their advice but I'm still embarrassed to bring it up.
But today I left the house for my long day at work 10-8 and she was crying. Crying when she called twice also.
So am I really doing the right thing? So torn.
You're not doing your wife any favors by trying to care for her yourself. You're being very selfish denying her the care she needs.
Your desires are normal-to live a full life, be able to communicate, not have to be a business owner AND caregiver. Don't feel guilty for wanting a normal life. You're a young man who should be enjoying the fruits of your labors. But you are also stuck basically providing everything for your wife. I'd be resentful to be in that role for the unknown future.
When my husband was near death, then convalescing, it was like each day was 3 days long.
She can't speak so that pretty much cuts off communication. Without communication, how do you continue a relationship?
In my opinion, you have "crashed" and are "burning" at the moment. Your posts are filled with anxiety, sadness, frustration, supressed anger, confusion, hopelessness and situational instability. I suggest you see a therapist. You didn't say that you've tried that option. This is a great forum but there's nothing like face to face help. Try it. If you don't find its helping after a few sessions, then quit. I've benefited greatly from therapy visits.
I would also suggest a "break", not necessarily a forever thing, but a little time out for both of you by having her go to a facility or stay with other family for a short time.
I know you want to honor your marriage but are you in that spot right now? A little rest can put the situation in a better light.
What a good husband you are for considering your wife. How hard it must be to be in her shoes too. It's overwhelmingly sad that this happened to your relationship. Even sadder that she may have contributed to her own demise.
I would also suggest that you open up your feelings to your family. Maybe everyone is thinking, "Dave/Dad is really handling this situation with wife/mom well." It's OK to admit the situation is getting to be too much for you.
Please see a business attorney regarding your son and how care for his mother will effect your business. Also an attorney that can advise you regarding your wife's handicapped status. I believe she would qualify for state disability.
We prayed for you and your wife this evening and will continue to keep ya'll in our prayers.
Hang in there and keep us up to date on the happenings in your household. Blessings.
I have spoke to the free aid ohio has been they referred to a local edler care. I spoke to one attorney who referred me to another guy and I have a message in there as well as with some elder care place in Ohio. I'll talk to them all next week.
Looking into an assisted living place rather than a nursing home. Left a message at one I found locally.
The mountain I still have to climb is talking to her. I've laid some groundwork with her explaining that I'm exhausted and that I don't if I can do this much longer. I questioned if she's safe at home etc. also. The mountain being the amount of crying, the possible rage I will encounter when taking the next steps.
My assumption is that even if I'm staying on course not dragging my feet as I have I'm looking at 6 months easily yet.
But I do feel a little relief in that I'm doing something. I just know that even when she was in a nursing home life was a chaos for me seeing her, taking care of the house and working. But I need some help and I know I need it soon.
I appreciate all your input and just want to thank you for helping me realize it and begin researching it.
Came in the house after an hour of shoveling snow & immediately smelled THAT smell. This is after earlier this am getting her up, making her eggs & toast , the meds , cleaning litter box & commode,dishes & other stuff I was way too tired to take care of last nite. All seems OK & in order with Mom (oh great day...am upbeat & positive...sun trying to peak out) even tho I have yet to even brush my teeth or comb my hair or even eat yet. I wear(cute!) sweats to bed so I am ready for anything........not dressed either.
Texted Moms plow guy as I can't get out until he comes...says he'll be here @ noon. Awesome! I can get out for an hr or 2 of cross country skiing........
Plow guy here.........when I get myself together I am FREE............oh joyous day....sun is out.....counting my blessings!!!!!!!!!!!
Back to the smell....still thinking OK...she forgot to flush or its waiting for me in the commode. I can deal w/ that.....nope...instead a nitemare is awaiting me............refer to 1st sentence so I can spare you the details.......she really needs a shower......but I choose to do the laundry instead as the smell will only intensify the longer I put that off. Another hour before my escape......sigh.....deep breaths......
This is my day off from a 32 hr work week..........it's 1 in the afternoon...am holding back tears as I now feel paralyzed anxious fearful & sad.......will force myself to go skiing as I desperately need the Endorphin's fresh air & the beauty of Mother Nature to heal my Soul........am crying now.......can't stop.....got to check the laundry.......
Forgot the vinegar to eliminate the poop odor...... am not washing it again if I am to get out of here today....just threw it all in the dryer.....
Mom blissfully snoring away..
Did I mention I have a dinner date tonite........1st in a very long time......he knows about Mom & took care of his Mom for 3 mo post surgery....don't even feel up to it now...........am afraid of completely breaking down in the restaurant...........am not very good company at all...........am exhausted.............mentally & physically drained......
Am mad @ myself for getting mad @ Mom...add feeling GUILTY to the list........
Dave.......back @ you with the very same question.......
I really should check on my now vacant house after the snow storm....I get twice as much snow on my hill..love my house............its a Winter Wonderland on my mountain.....more shoveling......
OMG! Just remembered...today is dump day!............closes @ 2..........I've missed it...........we have REALLY smelly garbage these days!
Just cant do it all today now after the poop incident robbed me of so much time......add ANGER to the list............it's always on the list now......can't seem to shake it off.......ever........
I understand your anger. I feel it too. I take care of my 81 y.o. Alz mother at my house. I have young kids and a husband. I feel robbed of a normal life with them, robbed of my freedom.
This new year, I vow to try to give attention to my children and husband and ME first. Then my mom. It is not fair or right to ruin my life and my marriage, my family for a old sick person who has had a full life and will never get better, only worse.
It probably sounds selfish, but it's not, it's self-preservation.
For example, not making a house you own your principle residence may be a mistake in that your house may be construed "investment" property and not shielded from Medicare. Its involved but well worth digging into it. I also found the care unit you are considering may well help you get Medicaid financial support ...... they did for me.
Good luck .. we're all in the same boat with you on this.
My wife told me she needed to go "back" to see her parents (dead for 20-30 years) ..she told me she had been told that their caskets were empty when they were buried. How she came up with that one, who knows.
Once your wife is moved to a facility and you get your life back, please update us so we can share your good news with you.
The mountains to climb yet are having another talk with her and getting it to this point. Gonna be lots of crying and I'm sure anger at me. She's been calling me at work a good bit crying, can't wait till I get home.
Lucy, hang in there. People don't realize how tough this all is on us. TG we have a forum here we can lean on each other's shoulder and vent etc. Hopefully you can reach out as well and we all can get some needed help. This is all incredibly emotionally draining.
Did you do a Medicaid "spend down?" If so what items were allowable?
The potential NH for Mom will apply for Medicaid for us but I am just not "trusting" them. Would they be more likely to ding me for anything they can as opposed to my Attorney doing the application? Like invalid spending? I have receipts & all monies were spent on Mom's care but I've heard they are not necessarily on your side. Is this off base & unfounded?
Moms house is in a trust for yrs so no problem there. Any inside info would be much appreciated. Sounds like you made all the right moves!
I'm 61 and I feel the same way. Mom, (95 stage 6-7 Alzheimer's), had to be put into memory care. They are doing a good job.
I'm a nurse, so I know how to take care of people but I could NOT physically and mentally handle my mom. I WON'T feel guilty if I CAN'T take care of her.
Same for you Dave. Don't feel guilty for not being ABLE to be SuperMan. We all have our limits and we're only human. When your body or mind are "screaming" that you've had enough, then listen to it.
If you don't , then your mental and physical health suffers and you are no use to anyone.
I SO hear you both! Were you able to spend down for Medicaid? I am on the verge of NH placement as I am "in your boat" now after 3 yrs of caring for Mom w/COPD & ALZ. Really 5 yrs if you count taking over cleaning, appts, car,lawn etc
Did you have the facility fill out the Medicaid application or an Attorney? Have heard horror stories about this final step to get your LO placed. I know I must sound like it's all about the money........it's not.
I told Mom not to save me any $$$ & to enjoy the fruits of her labor......she did alot of traveling & spent thousands of dollars on hearing aides but there is still some in accounts & annuities.
I know she should pay her way but it doesn't seem fair to those who worked so hard their whole lives & sacrificed daily while the neighbor who choose not to work and yet walks by the house everyday to buy a 12 pack. How do I let this go????
You can download the forms online, go in person (to Jobs and Family Services in Ohio) to pick them up, or call and request they be mailed to you. Fill out everything, provide documentation on expenses and assets, don’t hide anything.
For me this meant getting to their office at 7am to get in line and wait to meet with a social worker. I had all the papers ready, even a spread sheet showing the expenses I had incurred on Dad's behalf. The social worker appreciated my efforts, anything to make her job easier. Be patient, it's a government process and very slow. It took them 3 weeks to respond to an email informing them of my father's death!
If possible find a resource to help you. Check at your Doctor's office or other medical facility you use. I had a lot of help from Catholic Family Services and we are not Catholic! Maybe even AARP.
paying for seniorcare.com has some good information about assets and "spending down."
Divorcing a spouse who does not have a healthcare POA ends the able-bodied spouse's ability to direct the disabled former spouse's healthcare.
I'm sorry that some people thought I was "dictating" behavior earlier in this thread when I quoted a famous book to support the OP. Even a U of IL law professor said, "that as marriage becomes less sacred in our society, the utility of divorce as a Medicaid planning strategy will outweigh its moral repugnance." I suppose we are there. Nevertheless, in the absence of a POA, there will be no legal documentation to support Dave directing the care of his former spouse.