Home Aides OR Peace. Never both.
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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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.
And may I say, your loving husband isn't being very considerate of your needs. Take care of yourself. 💜
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.
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.
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.
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.
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.
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.
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...
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.
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...
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.
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,
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.
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.
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!
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.
chrisestoch - you got your help
without wounding his pride -
so wonderful!