Just venting, crying and angry. Any advice?

Part of loving your husband is loving yourself. You have done a wife’s duty and beyond. Have you talked to him about him going to a skilled nursing facility? Can you afford someone to come in and do the bathing? I’m my mom’s caregiver. I finally had to hire some help at nights so I can sleep 🛌 😴 💤 and during the day so I can work. Taking care of another person is the hardest thing anyone will ever do. I have caregiver burnout level 27. I don’t ever plan to be anyone’s caregiver ever again.

Today’s plan:

1. nice long relaxing bubble bath as I smoke my ciggies, listening to Tracy Chapman, reading/answering this forum.
2. Dogs and I run to pick up my sanity meds and then DOG PARK! Mutts can work off their energy with wiggle and giggles with other puppies and I’m might even get to talk to another friendly human. Dogs are looking at me and saying “take a shorter bath”.
3. Starbucks Venti espresso Frappuccino with four shots of espresso and two pup cups.
4. Maybe walk through hobby lobby and look for soft mattress topper ideal. My bed is hard as a rock and hurts my back. Hubby got the soft as heaven bed.
5. Maybe when I get home I’ll start digging the holes to plant my lilac trees. Lilacs are a special joy for me.
6. by then hubby will get up and I’ll take nap on couch while he eats breakfast and watch TV. Yippee!!

to all out there with hurt in their hearts, thank you for being there for me and I pray I can be there for you too.

Howdy,
To the wonderful legal advice and suggestions…..

From what I can remember from the cobwebs of my little pea size brain of information I have gather over the years:

1. hubby has no Long Term Care insurance.
2. in order to get paid In Home or Nursing Facility care:
A. Pay cash.
B. Lower hubby assets so he qualifies for Medicaid.
C. Sign over debt free house. (Translate to we both live at home till deaths but can not sell or borrow from house. I’m only 48 and hubby 70 of age. If hubby passes on anytime soon I am still young enough to do something with my own life. Dreams of selling house and buying RV to travel country with dogs puts stars in my eyes. Can’t live that dream if Medicaid has house.)
D. Nursing Facility I have checked into start $3000 to $5000 a month. More assisted living than nursing care. Assisted living is not appropriate for hubby. The Nursing facilities would still require me to supply resources such as special foods, bring home his laundry, toiletries etc etc. I did not find me still requiring to supply these resources a way to lighten my work load.
E. Some of my family support the Nursing Facility ideal but they would just put him “somewhere”. Their thoughts are “I’m sure the staff will take proper care of him, it’s their job. Besides they are RN and CNAs, I’m sure he will be fine. And if something happens you disagree with just talk to the staff and explain your expectations. At the very least file a report.”
F. I have not worked in over 10yrs and when ever I look at our social security statements I see very little income benefits from my own work history and any spousal benefits from hubby SS displays as zero.
No, I have not called SS themselves and talk to a live person because sometimes it’s greater stress to deal with “just one more detail”. I learned from grandma decades ago “choose your battles” and I have found that wisdom priceless and has served me well.

I just skimmed the responses so sorry if this is a repeat. I saw where you say you fall in the middle because of your income. Have you talked to an Elder lawyer. Someone well versed in Medicaid law. You can have your assets split. Your husbands split going to his care. When its almost gone, you apply for Medicaid for him. You stay in the home, have a car and enough of your monthly income to live on.

"We live on hubby Medicare and pension" If you worked you are not just living on your husbands SS and Medicare.  Anyone who has 40 qtrs of earnings receives SS and Medicare. My SS is based on my earnings. Because I already was half of my husbands SS, I receive nothing from his. I get Medicare because I worked. Yes my husband may have made more money but I worked!

"manage his $$" His money, its "our" money. My husband and I have always looked at it that way "our money". I think you have worked hard enough to say its yours too. Use some of "his" money to hire someone so you can have that little p/t job. You need to get out in the world. And know, that you cannot care for him forever. You are getting older too.

Tagtae, You're a super caregiver!! But even super caregivers need a break to take breath or even talk to another human in a delightful setting (okay, I use delightful in the widest meaning--not in the house, sitting with another adult). Unless someone has done the: "I do it all...housekeeping, nursing, driving, banking, etc." they haven't got a clue and don't get to offer an opinion that's worth 2 cents. Can you guys afford to have someone come in for 20 hours a week (most agencies won't work with you unless you fulfill their minimum)? And if that's out of your range, how about hiring someone to "person sit" a couple of hours a week so that you can have lunch out? Take care, you've devoted many years to your husband's health, but maybe it's time to consider yourself for a bit (I know, it's super hard to do).

I've reached the point where I've quit talking to people about this, who've never done this. I really don't care to hear their version of not getting this.

So for the time my mom was caregiving for my dad - every year "they" packed up and went up to their spot at the campground where they kept their camper year round and spent the warm months. It was a LOT of work for mom because dad really couldn't do a lot to help and I always wondered why mom put so much extra work on herself (packing everything at home, moving dad, getting the camper ready in the spring, winterized when it was time to come home, etc)
But she always told me when they were there, dad could sit on the porch of the camper and socialize with the year-rounders and the people who came during the spring and summer and she could "have a life" - she could come and go, go to the pool, participate in events, and just be herself for much of the time they were there. And know he was safe.
When they were home, though he didn't need someone with him constantly - he was always in the house watching tv sitting in the same spot, he didn't get out and socialize so she felt compelled to stay with him more - so she felt depressed. We could come by and be more involved but it just wasn't quite the same.

No one can safely - mentally or physically caregive for anyone 24/7 without a break. You need time to mentally and physically refresh yourself. And as odd as it sounds even a job can do that for you because it is a break in the other routine.

As far as your family member that you confided in. People often don't understand the sheer magnitude of caregiving unless they have done it themselves. And some people just don't ever have the right words or quite frankly tact. The statements you mentioned that you heard like “ur hubby doesn’t have $77 a day for adult day care?” And “so ur hubby supports u and u don’t take care of him.” - honestly those are really tactless and thoughtless. Meaning either they didn't think before they spoke or they didn't understand how thoughtless they were (or didn't care). People often don't have a filter and just say whatever pops into their heads. But the reality is their opinion doesn't matter. Even if they are important to you, which I know means their opinion carries more weight. The only opinion that matters is yours. You need to do what you need to do to keep your balance.

I'm sorry you didn't receive more understanding from the person you confided in.

On the other hand. Whose permission do you need to make the decision to take the part time job and use some of that money, and yes some of your husband's pension, to fund caregiving services to cover your working hours?

I think you are absolutely right to recognise that those hours could potentially transform your life. Is the offer still open?

I feel so bad for you. I am in the exact situation you are in so I know exactly how you feel. You are not alone. I try to take it one day at a time. I cry a lot too. No one understands what it is like unless they have done it themselves. Sending you big hugs and hoping you can find some way to make some time for yourself and find some joy in life.

Tag, have you checked into community Medicaid? This could get you some in home help.

LTC Medicaid will not take all of his income. You will receive enough to not be impoverished. If you needed to go that route.

I recommend having a free consultation with a certified elder law attorney, this can help you plan for the future and know what is available to help you and hubby now.

Have you researched stroke survivors and family support groups in your area? What you are living needs others that are or have lived it to give you support and hugs, they can truly understand and help you in many ways.

WOW! you are seriously brave, two malinois! We have had shephards for 25 years and they are the best dogs, bar none but, they are a lot of work. I can't imagine having my hands full of malinois', like you do. We have 2 young rescue Shepard's and my, oh my, they know how to keep us very busy.

I laughed at your dog cussing. I have a Shepard right now that speaks her mind, quite freely and tells people off when in public. She has been the biggest training challenge I have ever dealt with, so I hear you.

Keep working with and socializing her, eventually she will calm down and make the best service dog.

1 question, can your husband be left alone?

Thank you thank you for you all and all your kind and wonderful words.
Let me see if I can answer some questions and thoughts.

When the stroke first happen hubby had an very good income and equal amount of debt. I was able to pay debts off and save a little money. Now we have less income. On my path of recovery from nervous breakdown I got us back in debt, $30,000. I know how to dig us out of debt and the plan is in place it just takes time.
After breakdown I went to therapist and started prescribed medication and got home health. Home health was 9hrs a week for a month $1000 cash. 1/3 of our income.
We loved our home health lady. Wackey and weird but I trusted her. The only con is her life is massively drama. One day her husband decided to put a gun to her face. He likes that cocaine. Now that he is back in prison she is excited that they will now be able to work on their marriage. The short story she has faded from our lives.

My recovery/debt: I threw myself in diy house repairs and gardening. We now have a bathroom door that the wheelchair fits through. Bought us some creature comforts like a lift chair for hubby and a dishwasher for me. I also got me two Belgian Malinois for company and something ALIVE in the house. They required training and though the training gave me an social outlet it does cost money. My female dog is a most unpleasant dog but she has bonded with hubby and his gentle with him. God forbid if you go shopping with the two and she hasn't been fasten to him. All I can say there is no peace and she lets the whole store know, lots of cuss words. Yes, a dog can cuss.

My "me" time is dog parks and dog classes wishlist.

My hubby had a brain stem stroke that hit in all the right places to do the most damage for the size of bruising shown on the MRA.
Vision: dept perception and double vision.
Speech: garble words, short vocab.
Eating: peg tube gone after 6months and now a choke Hazzard.
Mobility: zero balance. Needs another person to walk. Distorted and jerking walking. Think palsy. Right side neglect and moderate loss of feeling.
Fine motor control: he can handle a fork. Chicken nuggets r best.
Incontinence: moderate.
Mental: 50/50 he was 100% firm/clear on his end of life wishes. Has humor. Doesn't understand why/get that I got to get his socks from dryer when I just told him that's where the socks are. He understood that he needed to help me alot when I was helping him transfer from bed to chair when I was recovering from my hysterectomy two months ago.

Why no nursing home? I looked into it when I had my breakdown. COVID just started and the thought of no visiting daily was not acceptable. The cost is more than his income. I would have to work full time which does not leave much time and energy to make sure hubby was in safe environment. The only job I am qualified for that is a decent wage is a job that I despise.

Let me know if I missed something. I am currently trying to come up with no money spending "me" time ideal. I don't do hair apts though I do like my toes getting done, I rather be in hardware store than the mall. I take my dogs everywhere. (My dogs r my friends. I have no human friends. Not for the lack of trying) If I can't take them I don't go. Any suggestions??

Again thank you all.

I’ve said it before, but here’s my take on this and similar situations:

NO-ONE who doesn’t provide 24/7 care to someone gets a vote when those that DO need to NOT do it any longer.

Tough sh— on them.

I’m amazed you’ve kept this up on your own for as long as you have, it’s simply too much for any one person. Don’t go back to the well of your family for support, you know for sure there’s no water there. I do hope you’ll either take a job or find another outlet, and have others step in to provide your husband’s care for part of the time. You need and deserve some time for your own life. I’m sorry your family can’t see the vital need for that, but many here can easily see it. You matter, and you’re not good as a caregiver without caring for yourself. Do rejoin the living, don’t listen to anyone who isn’t supportive, and know your husband has been blessed to have you. I wish you peace

Tag, I am sorry that the person you thought you could vent to made you feel bad.

Please follow what lealonnie said and listen to cwillie. You matter too and it doesn't matter what anyone else thinks of your decisions for self care. They can like it or lump it!

Great big warm hug!

If the job is still available, it would be wonderful if you could take it and use the money to pay for in-home care for him. You said the money situation is comfortable, but you aren’t happy. Maybe husband would welcome a different companion and helper sometimes. Also I’m not sure why, with the level of care he needs, he isn’t in assisted living or higher level care.

It's okay to admit you can't do it anymore, and shame on anyone who tries to guilt you into continuing past your breaking point. When we jump into caregiving it's often after a crisis and we seldom have any idea of just how much physical and emotional energy it will take, or how the years can pass us by. Sometimes we have to hit rock bottom before we can accept that we aren't perfect caregivers (nobody is). Although our options may leave us feeling stuck between a rock and a hard place you can't discount the other option just because it isn't perfect either.

I don't think your family members are the right ones to talk to in order to get support for your situation. Keep them out of your thought process otherwise you'll be having a lot of angry days where you wind up shaking with emotion, that's my advice. Support groups are more beneficial for you where you'll find people going through the exact same situation as you are; they are the people who can understand and empathize with what you are feeling & going through on a daily basis. This forum is one such place to find support, although it may not be enough. An in person group may help you, or a group who meets by Zoom if you can't leave the house, is something to look into in your area.

So in your post you say that you're comfortable financially. If so, why can't you send hubby off to daycare a few days a week so you can have some time for yourself? Or hire in home caregivers to give you respite? So you can go to the beauty salon or have lunch with a friend, or go shopping. Or join a book club or a gym to let off some steam. You've suffered a nervous breakdown already, according to what you said, so that means you need to take time for YOURSELF and not spend 24/7 caring for another, even your husband. If your own family cannot comprehend such a thing, that's a pretty sad statement on THEIR part, in my opinion. Shame on them for making you feel badly for wanting some normalcy back in your life! Caregiving is the hardest thing in the world, and everyone who's taken on such a job NEEDS respite.

If you don't think you take care of DH 'as well as you once did', it's likely because you're exhausted & suffering from a combination of caregiver burnout & compassion fatigue. Which happens to the best of us after a DECADE of 24/7 caregiving!!

Figure out what steps you can take to GET that respite and then make it happen. Figure out how you can carve out special time for yourself to rejuvenate and regroup, so you're not back in a position where your mental and/or physical health is compromised as a result. You matter too. So many caregivers think the only important person is the sick one......but that's not true at all. The caregiver is of EQUAL importance to the sick elder and deserves as much care & respect as he does. We often hear of the caregiver dying before the one being cared for, from stress alone. Don't be a statistic. Find help, ask for it, hire it, and get out of the house every day for some down time for YOU and only YOU. You deserve that.

Wishing you the best of luck figuring out how to make that happen.

PS: All the questions go to the caregiver forum, so it doesn't matter that you put this under the Diabetes category. I will report your comment here to the Admins, so they can move it if they see fit to do so.

Oops, hit wrong button and this discussion was suppose to go elsewhere. Not sure how to move post to the caregiver section. Venting, cry and angry.