Today, I'm stuck at home because my husband is unwell. For the last three weeks, I had managed to get out on Thursdays to attend a local caregiver support group. This time, I'm sitting at my computer typing on this (very helpful) support website.

My life has shrunk, but in many ways it's OK. I work online from home, I have my phone and computer for interacting with the world, and together we go out to appointments and restaurants several times a week. Friends? Does someone need friends when they have healthcare specialists? (lol) I believe it is an honor to care for my husband, and I love him so much. He is my world, and I am his. Since he sleeps a lot, it's not too much work. Do I crack up from the stress and sleepless nights? Of course, yes, sometimes.

Everyone tells me I should have home health aides who come in and give me a break. They tell me they don't know how I'm doing it on my own, and that I need to hire someone. They tell me I need to set boundaries with my husband and lay down the law. This pressure from well-meaning people causes me to crack up sooner and results in fights at home. My husband is absolutely against anyone coming into the house to care for him. I have to plot and push and fight to make it happen. Last year I took a class at a local college once a week, and it was constant angst leaving and returning. I got an A in the course, but didn't get much enjoyment out of the whole experience. And, although I enjoy the weekly support group, I'm not loving it so much that I'm heartbroken if I can't attend. I'd rather be here with my hubby if he's feeling so unwell. But then, I also feel like I'm missing out and should not be conjoined twins with my hubby all the time.

Is anyone else in the same boat? Is there anything wrong with choosing not to get outside assistance?

This week has been extremely tense because I've needed help transferring him a few times. So, I've been trying to set up help for the coming weeks, but after a big fight yesterday over a shower aide, I'm worn out. He can't see that it may be time to have extra hand around for certain tasks, and I'm tempted to let him discover it on his own because until he does, our lives will be miserable because of fighting. After a 15 week semester, he still hadn't adjusted to having someone in the house for 3 hours a week, even though it was a family friend! I try to address his exact concerns with accepting help, but it hasn't worked. He wants me to be with him, and he wants his privacy from outsiders.

In this post, I covered both aides for physical safety (transfer) and aides for my respite care. I do realize that sooner or later, he'll have to accept outside help because it will be unsafe, but so far we can make do by calling a neighbor friend if needed. And when I do crack up from the stress, he usually lets me sleep better the next night and treats me extra kindly, and things get easier.

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JuliaRose, After taking care of my Mom for eight years I can tell you I commend you as well. I do know from experience the toll this takes on the health both physically and mentally. The issue I have learned from not seeking outside help is that you won't see the total burnout coming until it is too late. If you plan ahead and allow nice people to come in and support you then you may be able to continue to do this. If there is not support in place then something can come up that requires this immediately and that would be a major stress for yourself and leave your husband vulnerable to having to be placed possibly. My Mom is coming home from a nursing home in two weeks after a stroke. I am coordinating every possible support possible. I look at my picture from just 6 years ago and I cannot even recognize myself. This is the toll that taking care of a loved one takes. It's too much for the body and mind. Please try to allow some support slowly and build up from there if necessary. There are great people out there that understand and they just want to give you the peace of mind you so deserve. Take care.
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Reply to thislife1958
dlpandjep Sep 15, 2018
Thislife - Oh how beautifully you said what I wanted to say - but in my current state of mind, it came out all wrong. Today it was all I could do to fix meals and care for the basic necessities. My brother came by to work in our yard and just before leaving told me he didn't recognize me when he first saw me.

Julia has such a positive, loving relationship with her husband - something to be admired, if not envied. I pray she seeks help and learns ways to care for herself, before it takes a toll on her.
I, too, am in a similar situation. I have been caring for my husband for 3 years now. The last year has been difficult, as his cognitive decline has progressed rapidly, and people finally are noticing what I have been telling them for the past year.

My husband and I have always been joined at the hip, but now, even more so. I am told frequently that I need to get help, and my response is, "he is not bad enough that I cannot handle it right now." There are times, however, that I truly want to scream--as I am sure we all do.

That being said, I do get out on Monday nights to sing with a local women's choral group, and usually, one of the husbands from the gals in that group come and watch a movie with my husband. This way, I get out, and my husband is not alone. He thinks they are just coming over to watch a movie. :-) I usually fix dinner for them and when I come home, he is relaxed and laughing with his friend(s).

So, for now, JuliaRose, do not feel guilty for staying home with your beloved. BTW, my husband does the same thing--when I have a meltdown and cry, something snaps and he is the loving man that I married. This lasts a few days, sometimes longer. Caring for a beloved is a full time job--sometimes a job that you hate.

I have been incorporating Music therapy every day, and it really is a blessing...Google "Music and Memories"...I have my husband back--albeit with no memory :-)--when we play music that he loves...sometimes, these moments keep me together..and I have also hired a house cleaner that comes once a month--so he gets used to someone coming to the house. She has said that she will come over and "pretend" to clean the house if I need to get away for an hour or so...for now, I have not taken her up on that yet.

Keep your chin up, you are amazing and know that you are no alone. When the time is right, you will know.
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Reply to Songbird1

My husband's aunt could have written this letter. Her husband was adamant he didn't want anyone in the house. Everyone said a day program for him was out of the question. "He'd never do that." She loved him very much but bit by bit her world became smaller and more stressful.

So...this summer she had two strokes and his options became go to a day program or live in a residential facility. Now, he loves the day program. He calls it "the club". And she is getting daily respite and coming along in her recovery.

What happens to him if you go down? You need to take care of yourself FOR his sake. My husband's aunt was lucky and will recover from her strokes. Some caregivers are not as lucky.
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Reply to Marcia7321

My husband was diagnosed with dementia 12 years ago, I took care of him in our home. About a year ago I found I was losing my patience with him more than usual. So I started looking into other options and found the perfect solution. Sold the house and are now living in an assisted living situation where we can live together with our things, I can get away and he is being taken care of. I still help with his care, but no longer deal with the incontinence issues alone, have help bathing him and no longer have to deal with food prep for him. It took a few weeks for him to adjust, but the staff is so good with him-in fact, he does better with them may times. I am still helping to take care of him, but have the support needed. I realized that our time together has improved with the interaction with others for both of us.
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Reply to PPAspousew

My husband is bedridden and I do everything for him but feed him. He was gone from January of 2017 thru May of 2017. When he came home from rehab, we were signed up for a course of therapy, Home Health and Visiting Nurse Care. There was someone here every day over three months. They mostly came early in the morning which meant I had to get out of bed VERY early, make his breakfast, change him and his bed,bathe and dress him, shower myself, get dressed and find some way to get our dog outside when they came because she’s not social. I adored all those people and got teary when the therapies were over, but I really felt like I was being invaded. I knew my husband wasn’t comfortable either. Now, we go nowhere and do nothing. I could use the break. But, honestly, in my life an hour or two respite is nothing. All I’d do is go out and spend money we don’t have.

You have to do whatever you and your husband are comfortable with. As long as he’s kind and you do things together, don’t let people convince you to have outside help. They all mean well, but they are strangers after all. Your friends mean well too. Just shrug and say, “We do okay.” That’s what I do.
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Reply to Ahmijoy

Can you try some tough love? It seems that his world, in his mind, is only about himself. You may want to tell him that you refuse to be controlled (actually you are currently giving him permission to walk all over you) A couple of suggestions are theraputic fibs...

"The caregiver is non negotiable and if he does not accept then it is nursing home for him" If he continues to whine, than tell him to do it himself.

Hire a caregiver to stay outside of the room unless he calls. You are gone and the caregiver is there like it or not. You can decide whether you will tell him.

If he complains and yells, tell him you are walking out until he stops, close the door and let him rant. Go back to your computer and ignore. Use your backbone.
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Reply to MACinCT

My husband had an acute condition that necessitated him getting all kinds of services at home. It was difficult, but absolutely essential for him to improve, so he and I were both more than happy to have our home "invaded." Because it was acute, insurance would pay home health aides as well as PT, OT, etc.; however, the home health aide (CNA) only came in a few times a week to help him shower--no more than 2 hours per visit. I did everything else, and it was truly exhausting. Now, the acute condition is much improved but he still has problems with balance and needs to use a walker. He is quite self-sufficient in most activities, but needs help woth showering and dressing. More importantly, he is still leery about being left alone for long stretches. Because he has LTC insurance, we've been able to pay a home health aide to come in twice a week for 4 hours (could be more, but that's what we're doing for now). This allows me good blocks of time for errands, appointments, helping out with grandchildren, etc. The aide helps my husband with showering, walks with him outside, brings him meals and snacks, etc. She actually doesn't need to do much directly for him, so also does loads of laundry, does dishes, and cleans. She could also drive him to apointments if we needed that. I think if you could have someone who's there to help you with household chores, it might be more acceptable to your husband and he won't feel as though he has a "babysiter." Of course his safety is one of the important reasons to have that person there. I find that having some chores done by someone else is a big load off me, and I can better appreciate the time my husband and I are together and feel less burdened by what I need to do for him (which honestly is now not all that much compared with what it had been).
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Reply to newbiewife

My husband also refused outside care. As I told him she was coming in for me. She helped clean at first, then as I was busy and couldn't help him right at the time she would go in and offer assistance and she became his friend. Now, if I use her to help me he feels I am taking her away from him. Go, slow and let him get use to the idea and then they are not intimidated as much. I also purchased a wrap around towel with velcro, he was a little less subconsious.
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Reply to chrisestoch
dinamshar9 Sep 16, 2018
Well done!
chrisestoch - you got your help
without wounding his pride -
so wonderful!
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You are to be commended for your devotion - however, unless you are SUPERWOMAN, you will suffer not only physically, but mentally as well - given time. I hope you hear from several who can give you advice.

And may I say, your loving husband isn't being very considerate of your needs. Take care of yourself. 💜
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Reply to dlpandjep

Perhaps you need to let things go as they are until you feel a shift in care is an absolute necessity - for you and your husband. And, you have the strength and determination to hold your ground and do it. I do not know your husband's mental/cognitive functioning/abilities. It is, of course, extremely difficult to make changes from what's been working - and then added to this mix is an intense, dedicated loving relationship. It really sounds to me that you know what you need to do and you'll know when you need to do it. I believe you are writing on this site to flush out your thinking process (and needs) by writing here. Keep writing. Keep reading. At some point, you will make decisions that serve both of you, even if they are hard or even if your husband expresses his feellings about it - let him express himself and get it all out. You do not need to respond to him in ways to support your position and needs. Often trying to convince someone adds fuel to that fire. He'll come around when you decide you've had enough and need to make changes. Gena.
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Reply to TouchMatters

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