Home Aides OR Peace. Never both.

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Home Aides OR Peace. Never both.

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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.

Home Care Spouse

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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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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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Dear Julia - I just reread my post and think I must be very tired. It wasn't very kind. Please forgive me - you have enough to cope with. I pray you find an answer to your dilemma.

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Janet, don’t feel you need to apologize. After reading Julia’s post, I have to agree with what you said. Julia does not indicate what her husband’s issues are and whether or not dementia is coming into play. But, I believe that because she is his only caregiver, she is also the prime target for his temper tantrums. He sounds like he’s angry at the world. As I said, we did not appreciate being invaded by the therapists, but there are times I do wish that there was someone at least to bathe and change him a few times a week.
I admire her for the fact that she says she considers it “an honor” to care for her husband. I’ve been doing this full time for 5 years and off and on for 15 and I certainly don’t consider it anywhere near an honor. It’s difficult, angering, frustrating, stressful, depressing and hopeless. But I admire Julia for saying it was an honor and kind of think I’d want her in my corner if needs ever be.

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Julia, I’m not in your situation at all, but have learned a lot in taking care of my parents, the main thing being if there’s one constant it’s change. You sound exhausted from trying to get some help, it’s been more battle than it’s worth. But change is coming, and coming, and coming. The situation is progressive as I’m sure you realize, not sure your husband can grasp that or not. A lot of this need to have caregivers other than you, and your need to be able to get out and do other things, may not seem vital for now, but it will have increasing importance in the time ahead. I really hope you can find a way to make it work so it will be in place for when the changes invariably come and you can’t get by without help or being able to get out some

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Thank you all for your replies. I’ve been a full-time caregiver for 4 years, three of those have involved performing peritoneal dialysis throughout the day. I feel it is an honor because not everyone is put in this situation of keeping another human being alive. It is a huge responsibility, and I want to be proud of how I treat him. Also, he’s a unique person who has done a lot of good in this world.

Amazingly, my husband does not have anger problems. He very rarely lashes out. (Shocking, I know.) Our main source of conflict is about accepting outside help and me doing things without him. Similar to Ahmijoy’s experience, we just went through a week of being invaded by PT and OT for rehab.

Yes, Janet, you’re absolutely right that he’s not being very considerate of me. But, because of how much he relies on me to stay healthy through dialysis, I can understand why he gets anxious when I leave. It’s like if the person who refilled your oxygen tank left, you’d be nervous, too!

I know we will need help. I appreciated Daughter1930’s comment about change. Yes, change is coming. Dementia is setting in. Walking is nearly impossible. Things are getting harder. But at this point, I can’t force him to accept an aid. Maybe when the time is right, he would appreciate an extra helping hand. I’ve already seen this a little, especially at night when he sundowns.

I also know this won’t be forever. I am much younger than my husband, and with dialysis, the patient can choose when to stop or the doctor will make recommendations if dementia progresses too far. Only God knows, but I will likely have a few more decades to travel and do “my” things. I’m trying to be patient and stay balanced.

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I am humbled by your selfless love for this man. You truly are "one of a kind" and like Ahmijoy said, "I’d want her in my corner if needs ever be." God bless you and give you strength.

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JuliaRose
I was in the same boat. I always said I would keep my Husband at home as long as it was safe. That was safe for him and safe for me.
With the help of JourneyCare Hospice and the VA I was able to do that. I got the equipment in that I needed. I had the help of a CNA a few times a week as well as a Nurse once a week. A Social Worker would visit once a month and if I wanted it a Chaplain would visit. I also had the ability to ask for a volunteer that would come in if I needed to get out. BUT I also had caregivers that I hired through a program the VA has. I gotta tell you they made my life possible. Yes there were problems but I / we worked through them.
If your husband is aware (my husband had Dementia, Alzheimer's as well as Vascular so not sure of what he was fully aware of) and can accept an explanation and grasp it. Explain to him that you need to get out. You will have someone come in to be in the house. If you are going to be gone for a few hours there is nothing that says a caregiver HAS to do anything She or he can sit in another room and just be there in case they are needed. You can tell your husband they are coming in for YOU. Have them do a load of laundry, wash the floor, stir a pot of soup, bake a cake. They do not have to interact with your husband. They are there in case something happens.

Getting back to Hospice (one of my favorite topics) they can provide you with equipment that you can use to let you transfer your husband safely. A Sit to Stand was a life (and back) saver for me. As my Husband declined and could not support his weight by grabbing onto the Sit to Stand we transitioned to a Hoyer Lift. Again a life saver for me. I got an amazing hospital bed that had air flow through the mattress, he never got a pressure sore. A Broda Chair that was more supportive and adjustable than a wheelchair so I did not have to worry about him slumping out of the chair. My Husband was on Hospice for 3 years. Yes every so often they would have to "re-certify" him to ensure that he still qualified for Hospice. But there is always a decline of some sort, some more dramatic than others but he stayed on Hospice.
If your husband is not on Hospice I strongly suggest that you contact one in your area, no make that a couple and interview them and see what they have to offer and ask for an assessment.

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Thanks for your reply. Unfortunately, hospice is only an option if my husband goes off dialysis. At that point, he’d only have a week or two to live. I really wish we could be with hospice now, and it’s frustrating. I also wish we had a sit-to-stand. We can get some services through the VA, including home aides for a few hours a week, but so far they have only disrupted our lives, not benefitted us. I like your idea of having them clean. That is a good idea ...

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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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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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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.

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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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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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Wow. What a story. I do know where you are coming from and my heart goes out to you and your love and commitment to your husband. I will say he is embarrassed about the position he is in now. I would guess that his life was very independent and he often looked at "asking for help" as failure. He saw it as weakness in other men his whole life and now that he is in that position, he can't. (of course not sure if this is true or not)

For your sanity and making sure you don't have an episode that needs mental hospitalization, I don't know if others have suggested this, First off, it seems that a little fibbing is in order. You say he lets you sleep more and rest if you "crack up". It seems to me that this needs to happen MUCH more often then it does right now. Please, please, please understand that this rest is NECESSARY for your health and your ability to care for him. Next.....bring in a house keepper/ cook that is there while you are. This person is really someone who can care for him if he needs it. After a week or 2, start leaving the "cleaning person" alone with your husband. I wonder if you have already tried this. Obviously your husband will see that you need help with cooking, cleaning, laundry, etc. as well as taking care of him.
I am not sure if you have already tried this.

Also, have you been "faking" positive around him? If you have.........STOP THAT IMMEDIATELY. Too often we let them see one person and inside we are another. It happened to me. Things changed once I showed my real stress, exhaustion, and sadness. I didn't read all the other posts, so I apologize if this is a repeat of suggestions...

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Hello,
First, I can under both of your questions. It is important your husband has a skilled caregiver available for assistance.
You have work that needs attention and if you do not put yourself first the tension will remain. You , work and relationships will suffer. This tension is harmful to you and in your relationship to your spouse as well.
What if you hurt your back trying to transfer ? Your responsibility is to take of your self first then his needs.
After reading your request several times it is apparent your spouse wants you to be his only caregiver. Be honest with him that being available 24/7 as a caregiver is too much of a physical & emotional request. By having a caregiver to assist him with basic needs will allow you to give yourself a recharge of your energy. Choose caregiver wisely because family friends may not have experience with caregiving for a person with your husbands needs. A professional caregiver would give you piece of mind that his needs will be met. That will reduce your tension and support your role as spouse and primary caregiver.

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I care for my parents in my home. Mom has dementia. I received vouchers from the Alzheimer association and have had a nice lady come in twice a week for 4 hours at a time. She cleans my parents’ area of the house, showers and dresses my mom and changes the bedding for them. My mom hates having this woman come in and invade her space. She has been refusing to allow her to shower her. I have explained over and over that she is there to help me, but Mom gives me all kinds of complaints. I don’t know how to fix her attitude. It causes us a lot of stress!

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I totally hear you! We are very private and don’t have kids, so the house has always been personal space. How to adjust to someone coming in or even different caregivers coming in for hours each week?

And the shower! The only time my husband agreed to have help was the day after my initial post when he was showering and afraid of falling. He’s traumatized of the shower now, but at least he agreed in the moment with getting an aide, but not a woman aide. I scheduled a male to come on Thursday. Let’s see...

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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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So I’m not seeing a question here but more of a venting and wanting to seek folks in the same boat. I’m sorry he’s being so inflexible and stubborn. What would happen if you just hire help when needed? Big fight? Then what...does he sulk? The balance is between having a sense of autonomy and being kind and helpful to your husband. I don’t see one exclusive of the other but I guess he does. I wish you the best in your caregiving future. There will come a time where you may have to say, I can’t do it so it’s either home help or AL.

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You must be married to my husband's imagined twin. He won't permit anyone into the house to help him either. Recently, I pursued him to "let me" get someone to help with the housework. This is a start, and allows me more time to take care of him. It also means the drain on my energy is reduced. Perhaps this may help you too. I wish you well.

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Glad I’m not the only one. Lol. I did try the “cleaning lady” trick last year, and he gave me such a hard time about needing a slave around the house. Ugh. But, this is a new year, and things have changed somewhat. I’ll justify have to keep trying.

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JuliaRose, I believe that you are very lucky that your husband is on dialysis and can end it all at a time of your--or his choosing, if he is capable of that. My beloved (and second) husband, who had vascular dementia, had a massive stroke that left him unable to walk or swallow and no central vision. Our medical directives both include instructions not to put in gastric feeding tube, and he died in 3 weeks. He was 71, and I believe his death was as peaceful as possible under current laws. I also had a friend on dialysis who decided at one point in time to forego that and died within a week, an easy death as he just went into a coma for several days. I carry a gene for late onset Alzheimer's but aside from that no risk of dying from vascular or kidney cause....I wish I did! As it is, my first husband and father of my two children is in nursing home/memory care but in good physical health. The kids are worn out with his care as they have jobs and families of their own. My daughter even said she wished he would die as he is not himself in any way and would not have wanted this to happen. My son has cut his visits down to one every month or two, but as POA for finances he sees that the bills are paid. My nurse daughter (unmarried and childless), is POA for health care and visits (with his dog) several times a week. She is exhausted from the strain. I wish that both my Ex and I, when my dementia comes, had an easy out like stopping dialysis!

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Hi JuliaRose,

Sorry for the challenges you are faced with and I can relate. I'm going to keep my reply short and simple:

Tell your husband, "I'm having a friend over today! She/he is going to help ME with some tasks!" Then just leave it at that - stand your ground with your right to have a visitor.

When the caregiver arrives slowly drift away into another room and capture some 'me' time, of which you so greatly need!

The caregiver you hire will need to know they're supposed to pretend they are your 'friend' visiting, and have them serve your husband his snack, beverage or meal. Plan to stay home the first number of visits while they're there, but drift out of the room each time to allow them to serve your husband. When they return for the future visits thereafter, remain in the home until you feel your husband will 'accept' that person in your absence. If he likes their personality then I would assume he would begin to accept them.

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Thank you for your ideas. I actually tried that. The caregiver came in and helped me in the kitchen, but when I asked her to deliver the food to him, he threw a fit about having a woman in his room. The poor girl was training to be a nurse, and she had such a horrible time (as did I) that day. He also wouldn’t let a family friend do it either. Made him so uncomfortable that he only spends minimal time with my husband when necessary. Sigh.

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Dear Julia Rose, it sounds as though things will only change when your husband actually wants more help than you can give. You say that you are tempted to let him discover this on his own, and that sounds like a very good idea. When and if you are ready, perhaps you could find yourself unable to do something that your husband values. Then together you could find a strategy for help with it. Be a bit creative!

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So many of the comments here are exactly what I am hearing at my support group or from my friends. I thought they were just trying to give me a pass. I didn't really feel overburdened or taken advantage of. I wanted to do a good job taking care of my guy. He has been diagnosed with ALZ for about 4 years and it is obviously worsening. As someone else said, we have been living a "normal" life but each day our world grows smaller as fewer things are safe or easy to navigate. He is no longer a "fall risk" but a "fall guarantee". He has now accepted that he needs to walk with a cane but will not allow a walker. He is frequently incontinent and is only now accepting wearing disposable
underwear. (After several embarrassing incidents) But each of these was slow happening and required a dramatic event to bring it into his focus.
So, even tho I did not feel so trapped I did take advice and bring an agency aide in for 6 hours one day a week. I think I resented the invasion more than he did. Surprise! It's working out well and I do feel better. She arrives, takes over the house and him and I go out and do my chores, marketing and visits with friends. I come home to a clean, well fed man. She helps him shower, shave and even massages him with body cream and cuts his nails. She makes his breakfast and lunch and even leaves some for me. She tidies up and folds laundry. It is a pleasure to come home, my attitude, which I thought was OK, is better and so is his. He was vehemently against help, "I don't need anybody!!! ETC. But now he 's loving all the attention and a new audience.
I just did it, didn't ask his approval or advice. She just arrived and took over.
I like an agency because they are licensed and bonded and you can add more hours or cut if you want and not feel guilty that you are hurting an individual. It is working well for me now. At a later date I may have a different opinion.
Another thing that bothered me was the idea of paying someone to sit and read or knit while I was out. But, obviously, she keeps somewhat busy and is available for emergencies! Gives you a different sense of freedom to not worry, "What's going on at home?"
I hope you consider adding some help............I'm sure you will feel better (even tho you don't feel bad)
Good luck,

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Isn’t that interesting! I’m so glad you posted. Your husband completely switched to be ok with a caregiver!

I‘m going to try it this Thursday so I can go to my support group. I’ll get a male caregiver (through the VA agency) and see how it goes. I’m not sure if we could handle 6 hours, but maybe 4.

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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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We don't need to let our loved ones push us around and control us. Having been married to a narcissistic, controlling man, I know well how tough it is to stand up for oneself. I'm a natural enabler. I'm caring for a mother now who is manipulative, and I could easily succumb to her control and guilt-tripping. But I'm the only one who can stop that and take control. Now, I just need to reread this post frequently to remind myself NOT to let myself succumb to her control attempts. That's what I read in many of our posts in this thread -- we are allowing others to control what happens when we are the ones who are helping them. We have to handle their anger and do what is best for them, even if they don't like it. Just because we love them, or because they are scary when we defy them, doesn't mean that we have to do what they want all the time. I do agree with the fibbing suggestions, as necessary, however!!!!

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I also am married to a narcissistic man with end stage Parkinson for 49 years. It is not easy! He has No empathy for all that is done for him. But, we make it through. Also, quoted in an earlier post you just have to be creative. Work around some of these daily struggles. Hang in there!!

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Hmmm. Extra kindly and things get easier. So you have always have to go through the storm to reach the safety of he harbor? Sounds like he KNOWS the way. That’s okay. But is it the best way? What if you have an health emergency? Whose going to step up and take control? He knows he is being unreasonable, state YOUR needs and don’t back down. This is your life too.

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Dear Teri and GA, my husband has never been a manipulative person. When I become emotionally exhausted, he gives me space and a little extra TLC.

He is grateful for all that I do, and he tells me this. He becomes very scared when I leave, honestly terrified. (Yes, we are testing out a different anti anxiety pill). And, it is difficult for him to accept that he, who was a Colonel in the army, needs assistance. He’s never been good at asking for help or trusting others.

Thankfully, he still has his normal awareness 95% of the time, although it would be easier in some ways if he wasn’t so aware. It’s difficult when the body starts to go.

If I have a health emergency, a friend can step in. Thankfully, I’m young and healthy. But, I would like to get more help around the house and respite time. However, I want to work with my husband on this transition, not become harsh.

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It's tough love. My sister and I have had to give our 92 year old mother a choice: if you want to stay in your house, we need to bring the assistance to you. Otherwise, you will have to go to outside assistance - meaning assisted care. You love your husband, but you need to stand firm and get assistance in. Otherwise your mental and physical health will not allow you to be there for him.

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JuliaRose, is it possible to ask about getting a Sit to Stand through the VA? Or can it be ordered through your husbands Doctor? Just like an order for a hospital bed or a commode it logically it makes sense but then again insurance makes no sense to me at times.

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Thanks. I’ll have to look into it!

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JuliaRose,
My dad was cared for at home by his mom. It was because of help at home that she was able to keep him at home until his death and yet keep her own health. I'm sure you've heard the health statistic that the health of caregivers declines more rapidly than that of those they care for. So self-care is important. Most agencies will ensure you have the right fit. My mom would call the agency if the person didn't work out (for any reason, no questions asked) and they would send someone different. The gals who took care of my dad for 15 months were like family--we hugged them when we visited, they gave my young son gifts, they came to my dad's funeral and kept in touch with my mom for years afterwards. You need to explain to your husband that you love him and are willing to take care of him but in order for that to happen, you need to stay healthy and to stay healthy, you need a little help. Explain to an agency the situation--they have dealt with it before--and ask them to send someone who can deal with it.
Trust me--I have a husband on disability--and am learning firsthand (again) that self-care is important. My spunky, active, healthy 86-year-old mom is visiting me right now to help encourage me. I have been lax in self-care and it has resulted in both physical and emotional stress.
Do what you need to do to be there for your husband for the long haul. He may not like it but he will get used to it, especially if he loves you and realizes it is in the interest of preserving your health.
Blessings!

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My husband did not want any one here in our home either. But I just held my ground and said simply this is the way it is. No big discussion, just let her keep coming.
Sometimes he would not come out of the bedroom till very late, and would tell me she wasn't necessary. but I wouldn't let is be a topic of discussion. Other times he would give me a cold shoulder and show me he was displeased. But I would be pleasant and tell him I loved him , and the CNA was there if he needed anything.
Now he is more accepting and does come out to greet her. I also tell him where I am going and when I will be back.
It took me a while to accept this for me, and it has relieved so much stress for me, and I have allowed myself to have this so I am better in this caregiving role.
It has also helped me broaden my world, caregiving can get so isolating and our worlds get smaller.
Best wishes.

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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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Well done!
chrisestoch - you got your help
without wounding his pride -
so wonderful!

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Praying that this goes well for you, JuliaRose! :) Teri

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Dear JuliaRose, I read all your posts again, and found the one where he said that you just wanted 'a slave around the house' if someone came in to help you with cleaning and other jobs. I hate to say it, but he is the one with the 'slave around the house' at the moment. It is clearly a very difficult situation for you, because in many ways he is still the man you love and you married (unlike someone with serious dementia). But he almost certainly didn't want to marry a door mat. Perhaps you can talk to him about ways that he can 'pull his weight' in the way you both are living now. Even thinking along those lines might be good for him. Best wishes.

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Home Aides OR Peace. Never both.

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