I made a decision.

JoseyWales

I'm going to place DH. 

I've been back to work for 2 weeks. Averaging 4.5 hours sleep a night, in about 2 hour increments. Bathroom issues are increasing. Meds were increased earlier this week, but have no effect. He requires almost constant attention, or he gets upset. 

Big incident today that required me to leave work. I can't do that again. I can't quit - I'm 53. I am dreading the work to get him qualified for Medicaid, but there's no way I can afford memory care without ruining my future.

I've only done basic research into memory care centers, because I can't find the time. But now it's him or me, and I'm going to have to be selfish and choose me.

M1

It's not selfish JW.  It sounds like the right thing to do.  I'm sorry, I know it's hard.  What's the next step?  I think it helps to focus on just one step at a time.

June45

Josie, you are not selfish...not even close.  Continuous lack of sleep can cause serious health problems. You want to be around to oversee the care of your husband.

Is there any way you can take a Medical Leave of Absence under the FMLA so that you will have the time to find a place and get all the paperwork done?

Stuck in the middle

Glad to hear it, Josie.  You and he need the help.

DrinaJGB

I would rate sleep deprivation at the top of the caregiver list of the worst things to have to endure.

  The first year my DH was home after his brain injury he had night terrors and hallucinations. He yelled out all night long until daybreak. It was torture. The brain after a viral assault has free-floating debris that wrecks havoc on neurons and lesions. It is one of the most bizarre thing one can experience. It lasted for a year. Straight. No rest. Ever.

 That makes you crazy. I had 2 wrecks and lost 30 pounds. I thought we had both been flung straight into hell with no way out. During those very long and very frightening nights I came to realize 2 things I had never really considered:

  why sleep deprivation is used in torture; why caregivers end up so desperate as to be driven to murder/suicide. Never thought of either at any length, but it became perfectly clear to me during that year why both of those things have occurred.

Ed1937

Josey, I know that was a hard decision, and I'm sorry. But you are still a young woman, and you have a life ahead of you. You will still be his advocate, but don't second guess yourself now. You simply can't do it anymore. You are important. I just wish it was easier for you.

Quilting brings calm

Josey …. Do not feel guilty because you are 53 and need to work. You are absolutely right in that you have to plan for your financial future because you’ve seen how the unexpected happens.  You cannot sleep that little and be able to function.   You take what you can get in terms of the  placement now and check into other options later.  It  may mean further away for now or an older looking facility. It doesn’t have to be permanent but you’ve got to get you some room to breathe. 

Once he is placed, take yourself to your sewing studio for at least two hours once a week. Work that up to a couple more times. Get yourself some hand sewing to do in front of the tv at night.  And go out to eat with a friend once a week. 

piozam13

You have to take care of yourself - nobody can do that for you.  You have to take care of yourself so that you can take care/make rational decisions on behalf of your DH.  Taking care of yourself first is not being selfish.  It is the right thing to do IMHO.

John1965

Good for you! A wise choice. 

I left teaching at 50 to stay home full-time with DW.  Teaching in the modern era is extremely stressful, and I couldn't give my students the attention they needed. And, we could afford it. In hindsight I should have stayed on the job; retiring so early was difficult for my self-esteem and made DW overly dependent on me during the early stages.  But I digress ... It is right that you take care of yourself. Good decision. I miss teaching, but am glad to be out of it too. Especially in the covid era. 

David J

Josey, this week I put down a deposit for memory care. I am starting with a month of respite care, but am prepared for a permanent placement if it all works out. I am not working anymore, and I don’t know how you do that. I am running from the moment DW wakes up until the moment she goes to bed. Add a career to that mix?  No way. There comes a point where the only way forward is getting professional help. We can’t be CNAs, housekeepers, food service, facilities managers, groundskeepers, and everything else required, at the same time we are trying to be a loving spouse AND work full time!  

I know you are doing the right thing, as am I, but I also know how hard it is. Our lives changed so slowly, like a frog in slowly heating water who doesn't notice he’s being boiled to death. We are smart enough to notice the boiling water and its up to us to get out of the pot. Be well Josey, and be strong. You are doing the best thing for your DH. 

Buggsroo

Josie, 

You are making the right decision. Who is going to look after you if you get ill or your health gives out. Taking care of yourself is the only way to be more effective. I have toughened up considerably from starting this journey. I work part-time and I need my job, yes for the money but also for my brain. It keeps me sharp and focused.

Being a caregiver is a special kind of hell. Shore yourself up.

Bhopper

Josie 

Just the echo with all of the post above say I have just recently gone through it and struggle daily and will for quite some time but when I am clear and bright and have not deprive myself of sleep even still I know it’s the right choice for her and for me I can’t be there for her if I’m half out of gas It is difficult but please stick to your plan and as someone else mentioned please try and find fmla help I was able to as I also still work I couldn’t manage it any other way. Best

BH

French

Josey, you know we are exactly on the same boat. Fortunately here MC are not so expensive and my partner’s pension allows him to pay it.

We already have done the impossible and can’t push the boundaries eternally. Yesterday the toilets were dirty again (poop on the tiles) plus the soap in my bottle… I know that my decision was taken on time. Now gave myself 4 months to find the best solution for him, hoping I will be able to manage these 4 months and that he will have a place somewhere on time.

Joe C.

Josey, You are making the correct decision. As you state, you’re young and losing your employment would have devastating impacts on you future as well as your ability to be a caring advocate. The facilitator of my support group often says, “dementia will destroy one life and if you let it, it will destroy two.”

Lills

I was a junior and HS teacher.  Thankfully, DH didn't show symptoms until two years after I retired.  I can't imagine teaching and taking care of a LO with Alz.  I was always dog tired when I came home each day!

I know it's a decision you never wanted to make but teaching and caring for your DH, in my opinion, is not doable (let alone sustainable).  

Good luck and hope placement goes well.  

LadyTexan

You are NOT selfish JoseyWales. You are doing what you need to do to survive. 

May God bless you and guide you as you find a facility for your DH and take the necessary steps to place him.

Jeff86

Adding my voice to the chorus of support.

No one who has been a spouse/partner caregiver for years should ever feel guilty for seeking help, and that’s what you’re doing.  Everything about your situation suggests you’re making the best, right decision.  

When DW was diagnosed, I sold my business but had to enter into a three year employment contract.  A year into it, DW could no longer be left home alone.  So I have had aides with her every day during working hours.  That’s what has worked for us, but everyone’s situation is different.  

Finances, health, and disease progression are all totally sound reasons for placement.  You are doing the difficult, necessary thing.  Hope it goes as smoothly as it can.

JoseyWales

I can't thank all of you enough. Seriously. I have tears, and crying isn't something I do. I've read each of your replies carefully, and I so much appreciate the time you've taken to respond.

Last night I got 7 straight hours of sleep. And then another hour after he fell back asleep. I feel clear headed for the first time in a while. But I haven't changed my mind. When he did wake up, I couldn't get him to sit correctly on the toilet and all the pee went on the floor. The second time he woke up he wanted to go home again. There's more, but I won't bore you with the details. 

It's time. Diagnosis was almost 6 years ago. The first MRI because DH knew something was wrong was at least 11 years ago. He was only 46 when we noticed changes. This has been a long time coming.

Ed1937

Josey, I'm glad you finally got some sleep, but I'm even more elated that you are not changing your mind. You've had more than enough. and now you will be able to do the things you need to do at any time you want.

Marta

Josey :  from previous posts I sense that you live in or near the city that has the university whose mascot is a Mastodon. 

I am a PCP in that city. I have placed my husband in MC in this city.   If I can be a resource to you, I would gladly do so. 

White Crane

Josey, I'm sorry it's come to this but you need to take care of yourself.  There's no way you can continue without sleep and it sounds like he needs constant care.  Sending hugs and prayers.

Brenda

Virgil61

Hi Miss - I made a list of TEN positive reasons for placing my wife in MC (which is happening in about 10 days).  These far outweighed the few negatives.   This was a big factor that helped me flange up my decision.  Don't know if this helps or not.

Doityourselfer

Wishing you the best, JoseyWales. It sounds like it's time for your husband's placement.

JoseyWales

Marta - since there's only 1 university with a mastodon mascot in the US, I imagine we live near each other! I sent you a connection request so I can as you some questions privately.

Thank you for offering to help.

Beachfan

Josey,

I don’t think you are the least bit selfish; it’s self-preservation at this point. I was an educator in my former life and with 3 kids, a dog and a DH who was gone all day teaching and coaching other people’s kids, I could barely keep my head above water.  I can’t imagine how you are coping with working full time and caring for your DH with Alz.  You sound exceptionally strong and resilient; I hope you can figure out a plan in the near future that meets your and DH’s needs.  Best wishes; I will be thinking about you.  (And Marta, what a kind gesture and offer of help.)

Ed1937

Josey, I'm glad you have someone else to help or point you in the right direction. And Marta, thank you for reaching out.

LovingAwareness

This is such a good idea - start with a month of respite care and see how it works out, how your LO adjusts - and just as important, see how you do. If it is better for both of you, make it permanent. If not, at least you will have had some mental space to get things in order and catch up on sleep.

Newbernian

Josey, I am glad you had the clearsightedness to make that difficult decision.

Sometimes the tough decisions are the best decisions.  I feel it is in this case.

When my Mom had cancerous brain tumors, she was in home for a respite stay.  She was lucid at one point and said she wanted to come "home".  I wanted to honor her wishes and was mentally planning to do that. She was a large woman and I was going to rent a hoyer lift.  She couldn't eat solid food, so I would have learned to make pureed food.  Then I thought wait a minute.  When she had been at my house, all my time was spent on housekeeping.  She was incontinent slept through the night, fortunately, but every morning was changing sheets, washing and doing it all over again the next day.

Then I thought wait a minute is this what I want for our last time together.  I decided to keep her in the home.  A good place.  Let them do the chores.  My time with my Mom was time I could be with her.  Present if she became lucid so we could share some quality time.  Being there just to be there.  I tend to second guess myself but I have not felt one moment of regret for my decision.  She passed a month later.

Enjoy the time you can be with your Beloved, Josey.  When you look back you will know that you made the right decision for both of you and you will have the peace of knowing that love can change appearances but it is always the same in your heart.

God Bless you, Josey!  God Bless you, Marta!  You are the special angel sent to Josey.

Sligo177

JW,

You are not selfish, you are making this change for your DH because he needs constant help, and no one can possibly continue to do it 24 hours a day as you have.  Bless you.  It is so hard to make decisions like this - I support you and wish for you and your DH to have peace.  You deserve to take a deep breath and have some time to heal.  My time with my DH will be coming some day, and I hope I can make that hard decision, I'll remember your story.  You're not alone.  

Crushed

Several of you are teachers. May I just say "thank you" as a Professor Emeritus  for everything you do.  We are down stream and get the product of your efforts.   We KNOW how hard you work  Thank you

LadyTexan

JoseyWales - 

You are very brave. You have put great thought and consideration in to your decision. Do not doubt yourself.

-LT