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Hadnuff Asked September 2016

How do you balance your needs with your husband's needs?

I don't mean medically. I mean emotionally. I need me time. He gets restless very quickly. He is in rehab now. Maybe it will get a bit easier when he gets home. He had a stroke. But his mind is good. Can communicate. But can't use one hand and fingers. Wants out of rehab. At least out of building. No one else to help me.

Llamalover47 Sep 2016
Hadnuff: You, most definitely, are going to need some big time help, else you WILL BURN OUT!

BlackHole Sep 2016
Yes, get the handicapped placard for your car. In my state, you get the application from DMV website or doctor/specialist. After patient/caregiver and doctor complete the form, you can take it to your state representative's neighborhood office for free expedited processing. Or mail it to the DMV, who will their sweet old time.

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SallyKB Sep 2016
Local churches sometimes have ministries within the church who will help, free of charge, to assist people in tough situations like yours. Even if you don't belong to a church, it doesn't hurt to call and inquire.
It sounds like your husband will need a lot of your time and your assistance, but please remember to take care of yourself, too.. It's not selfish to try to have some downtime after he's settled back at home. It's necessary. Otherwise, you will wear yourself out.

Zdarov Sep 2016
I will echo my favorite things here: the beginning will be intense, just stick with it and know it will get better; and use as much help as is offered to you whether hubby likes it or not. Hang in there, you can do this!

Veronica91 Sep 2016
No one has mentioned depression which is very common after someone has a stroke. Talk to the Dr at rehab and see if he/she thinks and antidepressant may help our husband. it is important for him to make the most of rehab to get himself as improved as much as possible.
It is important to start as you plan to continue once he gets home and not tolerated bad behavior.
You are his wife not his slave so you need to establish boundaries and fulfill your own needs from day one. It is easy to feel sorry for a spouse who has suddenly become disabled but your role is to encourage him to do as much as possible for himself. Use as much help as is offered to you whether hubby likes it or not. This is the only way you will survive and be able to care for hubby at home.
This is a major life changing event for both of you and needs give and take on both sides. It may help you to talk to a therapist because your marriage has also suffered a major assault and it will take time to adjust. A lot depends on the quality of your marriage before the stroke.

jeannegibbs Sep 2016
It is not easy, Hadnuff. And the first hours and days home from a care setting can be overwhelming. But you will get through it! The high priorities will rise to the top and you will learn what you can be less concerned about.

How do you balance your needs with your husband's needs? Well, in my experience, you tend to lean more toward his needs. His needs are greater, after all. Don't think you have to reach some arbitrary "balance" or should feel like a failure if you can't work out an "equal" arrangement. You probably vowed "for better or for worse" and this is the worse scenario. BUT you absolutely MUST recognize and honor your own needs, for me time, for health measures, for outside support. Maybe in terms of hours it isn't "even" or "fair" -- you may give him more; he needs more. But you cannot be a successful caregiver if you give you nothing.

Maybe for the first hours and days that he is home you have very little "me" time. That is OK. You can get by for short, intense periods like that. Within a short time you do need to start putting your own needs into the picture, too.

rydynhood Sep 2016
Encourage him to stay in rehab as long as possible! Therapy IS SOO Important! The sooner he moves the better he moves. If he doesn't co operate he won't get better. Once he stops improving, he has to go home or into the 'long term care' section. Make the most of this time, encourage him to do the exercises, help him with them. it's all up to you two. Therapists aren't going to 'make him' do therapy. Only you can do that, you're gonna have to find your inner power to get him moving. or he never will.

rydynhood Sep 2016
It got easier for me when my hubby came home. They set up a hospital bed, hoyer lift, wheelchair etc. Visiting Nurses sets up home care in my area, so they gave me 22 hours a week for homemaker services. S/he will do laundry, cook,clean, run errands etc. Help with bathing n dressing. While she is here I can do whatever I want, like go outside, leave, go anywhere..just go drive around for a while something will occur to you.

AngieJoy Sep 2016
Barbara, If you talk to your husband's doctor, you might find that technically he now is classified as a "shut in." That usually means that a person cannot go anywhere outside the home without substantial assistance. If he is a "shut in," you should be able to have a phlebotomist come to your house for his blood draws. Medicare should pay for this. Also, when you do have to transport your husband, you might find the parking situation easier if you have a handicapped permit. Your husband's doctor should be able to explain how to go about getting the permit.

Could you hire a professional caregiver to come in for a few hours to give you a break? The agency I spoke with quoted a rate of $22 to 25 per hour.

I'm so sorry that you and your husband are in this difficult situation.

NYDaughterInLaw Sep 2016
Breathe. Breathe. Breathe. Breathe some more. Then, when oxygen is flowing to your brain, get a piece of paper and a pen and write down what you can do for your husband and what you cannot do for your husband.

You cannot watch him like a hawk. You cannot spend your life watching him so that he does not fall. It's just not possible.

Meals are a big priority because the both of you need to eat and get your nutrients. Call the rehab center or his primary care doctor and ask to speak to a registered dietician (RD). Explain that you are not an expert on meals and that you need guidance. Prepare meals for the both of you and add things like salt, for example, to your portion. Your husband is more sedentary so he will need fewer calories, but he still needs nutrients as do you.

When my MIL was on coumadin, she also avoided foods rich in vitamin K:
Other Green Leafy Vegetables High in Vitamin K (%DV per cup, cooked): Frozen Kale (1433%), Frozen Spinach (1284%), Mustard Greens (1037%), Spinach (1111%), Collards (966%), Beet Greens (871%), Swiss Chard (716%), Turnip Greens (662%), Dandelion Greens (471%), and Broccoli Raab (272%). But that does not mean that you should avoid those foods because you probably would benefit from adding leafy greens to your diet as they are loaded with antioxidants and you are in a high stress situation.

Is there a geriatric home visit program in your community? Or a visiting nurse service?

Get a calendar for the refrigerator and enter all his appointments. Try and stay organized because it will give you a sense of power and you will feel more in control. And set aside "me time" for yourself on the calendar because you cannot keep your eyes on him 24/7.

Set a schedule for him. Wake up time. Breakfast time. Lunch time. Snack time. Dinner time. Bed time. He was on a schedule in rehab. What was it?

And if he falls because he didn't listen - like my MIL did too many times to count - know that it is not your fault. Who can help you pick him up were he to fall?

Hadnuff Sep 2016
It is worse. And he's only been home about three hours. I have to watch him for now. He is still a fall risk. Feel overwhelmed. So much information. So many doctors and appointments. Blood thinner. Frequent tests in beginning. Watch his vitamin k. I guess. Haven't checked yet. Make meals most days. Haven't done that in long time. Has to be low salt, softer foods. And he is limited cause of foods he will eat and foods he is alergic to. Etc, etc.

ADCaregivers Sep 2016
If you try to do everything without me time, you will burn out. I tried, I did and now I don't or hire someone to help. I have SO with memory loss and I own a biz. You sound like an introvert. If you are not sure, then you might want to take the Myers briggs Personality test. You can find free versions online. As a care partner, you can't burn out.

Lassie Sep 2016
Oh dear. This question makes me so sad. There is no good answer. Things won't get easier and you won't balance your needs with husband's, you are in for an awful time. I'm so sorry. (and I say this because the same thing could very well happen with me in the not to distant future). As suggested, get as much in-home help as you can and get out of the house as much as you can. Good luck.

Llamalover47 Sep 2016
"Maybe it will be a bit easier when he gets home?" No, it will be worse.

becky1234 Sep 2016
All good advice. Your husbands PT and/or OT should advise you on how to manage him physically at home. Your doctor may prescribe in-home PT and OT as well as. Home health aide. Medicare and/or supplemental insurance should pay. You also can hire in-home assistance for a few hours a day. My husband had a severe stroke in 2011 and started having more health issues last year, and I bought him a headset so he could watch TV but I don't have to hear it and can read or work on the computer. Seek info from local support groups, books, etc.

Thomas0611 Sep 2016
Hadnuff: See your Doc and ask for written RX for Home Health Aide for bathing, Physical therapist to help recover use of limbs, Occopational Therapist for dealing with physical disabilities, Social Worker for good advice, Hospital bed, wheelchair if appropriate, walker, and bedside commode. You can private pay for additional help for a few hours each day to grocery shop, personal care appointments, etc.
The next stroke will be worse, so learn the routine now to be better able to cope then. The challenge is immense. Do anything and everything you can for yourself to ensure your survival.

Hugemom Sep 2016
I, too, have given up my "Senior Life" for my husband. My dreams of traveling the country or even just walking around towns on day trips, flea markets, etc. went out the window when my husband became ill in 2013 after a stroke in 2003 and basically gave up. He is incontinent, can't walk and refuses rehab just like yours. Speak with someone at the rehab. Most have social workers, case managers, patient liaisons, etc. They may recommend home rehab. When the therapist comes out, take off. You don't need to be there. Go get a cup of coffee. If his disability is just his hand and he can walk, even a trip to the grocery is a good wait for you both to get out for an hour. Your life will change, there's no doubt about it. It's annoying. It's frustrating. You'll get angry with him, yourself and Life in general. If you were an active couple with friends and a social life previously, let your friends know things have changed but you don't want to be reclusive. Have a get together at your home. We weren't. Hubby was devoted to his family business and we never cultivated friendships or went out and socialized beyond the business. I escape weekly by babysitting my grandchildren. I stay at my daughter's condo when my grands are at school and watch what I want on television. I worry, since hubby is about 95% immobile, but if I don't do this, I will have a nervous breakdown. Be selfish. Leave him a sandwich and a bottle of soda and go to a park, library or someplace else. You are not his entertainment director, you are his wife. It's not your job to keep him entertained 24/7. Take "me" time, by force if you need to. Don't lose yourself because of him. I have and now it's too late.

ferris1 Sep 2016
First you assess yourself about how you can handle your husband's challenges and your change in lifestyle. Second, I've found a change of scenery always helps calm an agitated loved one. Go for a car ride. With only one hand to use, maybe get him an iPad (I hope I am naming the correct device) where all he has to do with the other hand is swipe the screen to find all sorts of information. I've had wrist surgery recently and the doctor's office has these pads for patients to enter their information. Not having one of these electronic devices (you can also find this feature on a phone) it was an engaging way to enter my data. It was actually fun because it is a novelty to me. A person with dementia would probably not enjoy it, but you say your husband's mind is intact. As far as your emotional state, seek professional counseling if you are really at a breaking point. Do things that make you happy, (i.e. take a bath, paint your fingernails, get a facial, etc.). Treat yourself if you can afford it, and don't discount a walk where there is greenery. Mother nature really lifts one's spirit and soothes the soul. Hang in there. We caregivers are all just taking one day at a time. Best wishes!

Salisbury Sep 2016
I leave the house very day for three hours. He sits in a chair with the dog on his lap/sleeps.

I am fine. He is fine.

lvmullay Sep 2016
My husband had a stroke in 2010, similar in nature but affected his entire left side. He requires 24/7 supervision and assistance, by me. He has been enrolled in an all inclusive Pace program. They transport him to and from "the center" several times a week, allowing me to have my needed downtime. They also provide aides to assist with showering and grooming in the home. The Pace Program is income limited and its goal is to keep the patient in the home with support, who may otherwise be institutionalized.

cwillie Sep 2016
If he is exhausting you now it can only get 10 X worse when he is at home and has only you to rely on. He may have been the sweetest guy in the world before this but now he seems needy and demanding, and you need to learn how to establish some boundaries for your own peace of mind. Yes, he is ill and that sucks, but the b^tching and negativity aimed toward you needs to stop, or you need to find ways to deflect it, so you don't get so stressed.

gladimhere Sep 2016
Think about looking into a day program. Are you sure you want him to come home? If his care is now more than you can or want to provide there are other options to returning home. What do YOU want?

freqflyer Sep 2016
Your hubby needs Occupational Therapy so he can be able to do more things for himself. That is good that his mind is fine and he can communicate. It takes time for the body to heal, and some guys want everything to mend like yesterday. He's probably bored being there, and that is a good sign, too.

As for "me time", good luck, as it is tough to get ones mind to stop racing so that you can enjoy some quiet time. Even looking forward to a good movie or TV show, you might find yourself staring out the window and not paying attention to the movie or show. And all of that is so very normal.

If you want productive "me time", go through your closet and toss out clothing you no long want, and donate what is usable. Go through the linen closet, next. It will help keep your mind off of hubby for awhile, and it's a feel good task as now the closets look organized and someone else can enjoy the clothing if donated.

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