How do I communicate with and adjust to having a home health care nurse?

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Hello everyone I’m Chris and 45 years old. Around October 2016 I started feeling weak and exhausted more than I ever had before. It would hit me and last two or three days then I may go two weeks and feel fine. I went to doctor and they did the routine lab work and physical and everything came back almost perfect. For the next few months it would still hit and last a few days and then I would get over it. About this time last year I started getting numbness in hands, weak or heavy legs times, my hands would get weak to where I would drop or just couldn’t hold on to anything and of course would still feel weak and exhausted during this time. Just like with the weakness these symptoms would hit me intermittently every few weeks and then go away and I would feel fine until the next onset of problems. By January of this year my symptoms had got worse and were coming on more often and each time they were worse. In February my doctor finally diagnosed me after several test with RMS. They started me on some meds which didn’t seem to have much effect on me. By April I decided along with my wife that I would quit work as by this point my symptoms were daily and I was falling almost daily. The doctor had a physical therapist come three times a week and I tried to stay as active I can. My wife being a teacher has helped me throughout the summer but now that she has to go back to school we decided or mainly her that we would get me home health care to help me with my needs and therapy.


That brings me to my question. I know this is for aging care and while I’m only 45 I guess I fall in line with it having someone come and take care of me. How do I communicate with my nurse in a way to where I get what I need but I still have the independence I want? The nurse came today and she seems like a really nice person and one that would care about my health and issues but I’m only 45 still young but losing a lot of my mobile abilities. Right now I know she is coming around 10 and of course has to check my vitals everyday (facility policies) then around 11 I will do my therapy which for the first couple a day my therapist will be here with us to show everything I do and how to chart everything. Then something I’m not looking forward to is she will help with my shower. Now I can do most of this myself but she will be there in case I need help or fall. After that exhausting feat as I’ve found with MS she will make my lunch and do some cleaning around here and then set with me the last hour or so. She will leave around 2 to 230 and my wife should be home by 4.


Anyway, sorry about the book but I guess I still haven’t opened up to this idea and if anyone could give some good advice about communicating, getting a good rapport and just basic things I may need to know I would appreciate greatly. Oh and the awkward shower thing I would definitely appreciate that.

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Chris, the people who do this for a living have to deal with all kinds of difficul bathrooms and will have developed their own methods but I think if someone is helping you they would be in control of a hand held shower so they could keep it pointed at you and keep themselves reasonably dry, if you are able to shower yourself they would only need to keep the curtain between the water and themselves. 😉
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Chris1974 Aug 4, 2018
Most of the time I can shower myself from my knees up. She always washes my knees to my feet. Once I have a shower where I can sit I’m hoping to be able to do it all myself. However, days like this past Thursday where I started but couldn’t finish it makes it hard for her to do it because our shower is so small. If I had known sooner than a couple of weeks ago that I was going to have someone sit with me during the day I would have already had changed it and made it easier for her. For now we will make it and hopefully I can continue to most of it myself.

Jessica has been doing this for a while and is prepared everyday. She brings an extra pair of scrubs with her everyday. She said she learned that early on when she got wet from baths/showers, vomit on, used the bathroom on and so on. So she doesn’t mind getting wet because she is prepared I just want to make her job as easy as possible and not be an inconvenience to her.
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Chris, since you are going to redo the shower ask the contractor if the pan can be set below the level of the floor. This will make it a walk in or roll in shower with nothing to step over. The floor can be sloped to the drain. Most likely the walls and floor would have to be made water proof. I would do away with a glass door and use a curtain unless you can get the shower large enough that you would not be tempted to use the bar on the door as a grab bar. It is just to easy to grab that towel bar when you are getting in and out and they offer no support at all and the glass is likely to shatter.
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Chris1974 Aug 4, 2018
Thanks for the advice. We are considering taking our hardwood floor up around that area and put tile down. If we do that if water gets out it won’t hurt the floor. I’m trying to get the house ready for my long term care. Although I don’t go upstairs or the basement much I am having a gliding chair going both up and down. I guess it depends on the day on what I feel I need to do. Thursday I felt I would never feel better the last two not to bad. All I know to do now is take one day at a time.
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The life that exists inside a person is simply and truly amazing. It’s our energy, it helps fuel us and most importantly it gets us through each and every day. Once you wake in the morning get ready and to go to work, work all day, come home fix dinner, do yard work, take kids to practices or games, go on a hike or bike ride or whatever you do in your daily routine the life inside you allows you to do it. Even at times we may feel tired, we can go and do what we want or need to do. The sad part is many of us or most take this granted and don’t get me wrong after doing this day after day year after year it is very normal. It’s not until a person is struck with an illness or disease do we really know valuable that life inside us is.

Now while most of my days are not bad yesterday was the exception and just from scrambling two eggs, frying three piece of bacon and putting two frozen biscuits in the oven all of that life was sucked out of me that quick. In fact so much that I only ate about half of it. I went to the couch and just as I got my feet reclined Jessica came in and her first reaction said it all. You don’t feel good this morning do you? Then she saw the plate on the table and asked if I made it. She then told me I should waited and she would have done it for me. She brought the plate to the living room and feed me most of what was left. She did my vitals and my bp was a little low. We skipped therapy for the day and around noon we headed for the shower. As someone posted on here when they had a csection they were never so happy to see someone come and help her shower. Well after washing my hair and just a little of my body I was never happier to hand the job over to Jessica and let her finish. I was extremely exhausted to put it mildly. Once I made it back to the couch she told me I needed to lay down and take a nap. Like a child to a mother I told her I would be ok and didn’t need to sleep. As she past back and fourth a few more times she “reminded me” that I need to lay down and sleep some. Finally she came through with my pillow and laid it at the end of the couch and tapped her finger on it a few times as in saying lay down and go to sleep. She grabbed the remote and turned it to the easy instrumental channel and I was out like a light and slept for about an hour an half. When I woke up some of the life was back in me as I did smile some as Jessica told me. I had to chuckle a little at how she took charge over this old broken down man but in reality for days like yesterday I’m so thankful for having her here and helping me get through my really bad days without her I would have been in a lot of trouble.
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Daughterof1930 Aug 3, 2018
Hey Chris, it’s great to hear that the nurse is working out so well and how quickly you’re getting used to her presence and help. It’s truly a godsend for both you and your wife to have both the skilled care and the peace of mind. Glad your anxious feelings over it have been put to rest and it’s proven to be exactly what you needed. And yes, life has a way with us all of taking away that pride and serving us some well deserved slices of humble pie, it’s in those times we learn the most
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Chris, one of the things that I found helpful and my Husband used a lot was..
I got a used walker and kept it in the shower. He could use his regular walker to the shower then he would grasp the one in the shower. This way he felt more stable and he had something to hold onto that he was used to. We do have grab bars but to get him to hold a grab bar was difficult. He used the walker so he knew to hold on to it. (My Husband had been diagnosed with Alzheimer's and I think he also had Vascular Dementia so getting him to do something "new" could be a challenge)
I would get the walkers at resale shops never spent more than $3.00 on one and when it rusted or was no longer sturdy I would put it to the curb for recycle and always a metal junker would get it before the garbage men. Used this method until I/he/we switched to a shower wheel chair.

As far as communicating you are doing a great job here. And as long as you are honest with the nurse you will do just fine. If there is anytime when you feel uncomfortable let her know and between the two of you you will figure out a solution.
A few thoughts..
You do not say if your shower is a walk in one or a tub shower combo. If it is a walk in there may come a time when you might find it difficult to step over the shower pan base. You might want to think of a way that you could ease that step over. If it is a tub shower at some point a shower bench might be needed. You might want to look for one with a back support and arms for more security.

It is actually interesting to read your thoughts and comments it is a completely different perspective coming from the recipient of care rather than the caregiver. I think you for that insight.
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Chris1974 Aug 3, 2018
Thank you for your reply. We have actually thought about getting a walker to put in our shower but our shower isn’t that big. In all reality it has barely worked before I got sick. All it is a small corner shower that reminds me of an old phone booth. I am in the process of getting a contractor to come out and tear it out and replace it. I’m coming up with a new type shower for people who need assistance. The wall my shower is on is 70 inches from corner to the door frame to our bedroom. The width wall is only 33 inches from corner to closet door frame. So what I’m lookong to do is make a shower that is alround 65 inches in length and most of the width 30 inches. The difference in this shower is once the length comes out to 30 inches which will be away from the closet I’m going to make it circle out, kind of like a half circle. Which will go out enough for me to build a seat for me to sit on. The circle part will extend to about 50 or so inches then the shower will level out to around 65 inches. In the middle of the shower circle will be a seat and about in the middle of the half circle we will put a shower pan base of around 16 or so inches tall. We will get an extra long hose for the shower head and I will be able to connect to that area. Then Jessica and get in on “dry side” and will be right there with me and still be able to stay mostly dry. I will put a main shut off on her side just in case I fall and she has to help me up. Also on her side will be a drain for the times we lose control of the water and gets that area wet. Also with this design she will be able to control the water as well. I know right now it’s not that important to have this but in case I don’t improve or God forbid gets worse it will allow me to continue to take showers with Jessica or whoever to be right there with me.

The communcation with Jessica has been great. She really does feel like a family member and there hasn’t been anytime that I’ve felt uncomfortable. Today she drove me to my dr appointment and got to meet my primary care dr and got copies of some notes and office visits.

Im glad I found this site although I know it’s for aging patients. It’s been great to hear from all of you and I hope it will continue. While this a message forum board I would like to continue interacting with everyone and even more that I haven’t yet. The one thing I wish this site had was a small blog area where people like me could actually talk about my day and read about others even if it is just from the caregivers side. It has been a huge help for me.
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Prepare a list of your concerns and ailments and anything else you can think of.
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Chris1974 Aug 2, 2018
Thanks for the comment and thanks for the reminder. She asked me last Friday to do just this and then yesterday asked if I have done it. When I saw your comment this morning I started my list.
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My very first day with a home care nurse. First I’ll start with a little info about her. Her name is Jessica and she is 28 years old and have been married for 4 years and has a sweet pretty little 2 year old that I have seen pics of today. When I woke up this morning I must admit I was nervous and a little uneasy about what was going to happen but at the same time excited about how the day may go. I’ll describe it as a young child going to school on their first day of a new school year. Nervous about what teacher they may have and how the classroom will be but excited to get started and see their friends.

My wife got me up before she went to school as she started inservice today. I had to fast this morning as she wanted to do a glucose test just to monitor and will be checked monthly (apparently policy). She came in a few minutes before 9 asked how I felt, I told her I felt weak and tired but not to bad. She checked my vitals, glucose and had me to stand to check my balance. After that she made me a good breakfast and I ate it was time for my therapy. She helped me in the floor and I did my therapy. After therapy and i got back in my chair I and rested for about 30 minutes it was time for my first time showering with my nurse. After our talk yesterday and thinking about it I decided I was going to keep my regular routine and do as I have since I’ve been sick. We have a fairly large trunk at the end of our bed. It comes up to our mattress and the top is cushioned so I set down undress and then walk to the bathroom and get in our shower. I’m case if most of you didn’t realize I am considered a fall risk which means when I’m on my feet jessica is suppose to be right there with me. So I get to the shower which she already had the water on so I got on in. Our shower has clear glass so she could see right in. Now I didn’t pay much attention to her but the few times I did see her she was looking down at my feet and legs I guess she could tell if I was about to fall that way. Anyway I washed my hair and body and then I opened the door and let her do from my knees to my feet. Once finished I dried my upper body and she dried my legs and feet. Then I made the trip back to the trunk, now the good thing about this trunk is one it is soft and two it is the same height as our mattress so after I’m done with my shower and can lay back on the bed before I dress. I found this is better because if I lay on my pillow in the spot I sleep in I have a harder time getting up. So today I did lay back and she did cover me up with a dry towel until I was ready to get dressed. About 15 minutes I was ready to get dressed my clothes which was lying next to me on the bed is easy to grab. Once that chore was finished it was back to my chair until lunch. By one it was lunch time and she made and brought me a good lunch. After lunch I usually try to walk the driveway but today it was raining so we walked through the house. Before I knew it, it was 4 and time for her to go.

I really have to say that I was never convinced or thought this was the best decision for me. Mainly because I didn’t know anything about this but I’ve found that I really think I have a really good nurse and one that I am comfortable around. She seems to care about me and wants what is best for me, my health and my comfort. At first the shower was strange like I thought but once I got in it wasn’t a big deal plus I realized as I was doing it that this going to happen 5 days a week now so I need to just be comfortable and keep my routine.

I also want to say to say that I would like to keep seeing comments and let everyone know I will respond to all of them. Thanks everyone for your support and letting me share this with you.
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Chris1974 Aug 1, 2018
There is one more thing that I’ll say about Home nursing. Like I’ve said many times I didn’t know anything about this before this. My grandmother and wife’s step dad was put on hospice the last couple weeks of their lives but they only came around 30 minutes every other day or so and both of them passed within 3 weeks of being put on hospice. What little I’ve seen it is amazing to me what all they do and the biggest surprise to me is how much paper work they have to do. I mean she records everything I eat and everything I do. She told me today that at some point in the first month she will monitor everything I drink in ounces and will collect my urine output. After just one day I have a total respect for these home health nurses they really have a lot of work and a huge responsibility.
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Are you comfortable with the female nurse showering you?
If not you could request a Male aid for that or if there is a male nurse that the agency employs that might be an option.
Also can you, once someone helps you into the shower are you able to do some things yourself? If so that might be an option.
(Just saw your response to someone and it sounds like this is an arrangement that will work for you, getting just the help you need when you need it.)
And I have to ask...are you a veteran? If so there may be programs that would give you and your wife a bit more help without added expense.
I also hope you and your wife are going to a Support Group. They can help a lot. A support group for you as a person with the diagnosis and your wife to another group for spouses or if there is not a specific group for spouses at least for caregivers. I think you both would get a lot of support and ideas.

And I have to chuckle at what might be a SLIGHT typo...where you state that "the doctors have told you that when they find the right medications with the right dose it should help you to {love} again.." might have meant live again but maybe not ;)
Sounds like you have a great attitude and a loving wife take care of both you will need them equally! As well as a sense or humor.
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Chris1974 Aug 1, 2018
Hello and thanks for your response. I will answer the easiest question first. No I am not a veteran although I often wish I had gone for a few years after high school. I will get into my shower when I post my first day with home health nurse. We have thought about a support group but we live in rural area now and there isn’t a group for just MS although we do have a fairly high rate of MS here. I try to have a good attitude because I know that there isn’t anything I can do about what has happened to me. All I can do is take what medications the drs give me and continue my therapy and work as hard as I can and hope to see improvements. It took almost a year to get to my condition where I’m at now it will take a while to get back to where I want to be. Yes that is a typo for sure I did mean live again.
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I know I mentioned in my original post about me showering in front of my nurse. It just so happened we discussed that issue today and we went into some pretty deep detail about it. She told me however that no matter how I wanted to handle it, it was the right way. There is no wrong way as long as each patient is comfortable and there modesty is being respected. She has had patients both male and female that has undressed fully in the bedroom walk or wheeled to the bathroom fully nude bathed and then going back to the bedroom to get dressed. No covers or drape at all. Then some that undress in the bedroom and use cover or drape to the bathroom. And some that wants to be in the bathroom before they undress and be right next to the shower/tub. Some want her to bathe them completely while other want to wash their genitalia themselves. The thing is no way is the wrong way it’s all right if that is how the patient wants to do it. She doesn’t judge or think anyway is wrong or more inconvenient by doing it a certain way. Then she said something that made me realize how doing this doesn’t have to change mine or anyone else routine. She said the ones that undress in their room is the way they did it before they needed home care. They didn’t want to change their routine just because of her. That made a lot of sense to me and I realized at that point she really wants me to be comfortable and do as I want to do. So I am much more comfortable with this at least tonight I am. Tomorrow will tell the story.

I have enjoyed all of the comments and conversations today. Everyone please feel free to add more and if have anything that hasn’t been mentioned please add it and let me know. Thanks everyone.
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Agingmyself Aug 1, 2018
You have a great attitude about this, and it sounds like your nurse is perfect for you!
Remember that you have a professional relationship with her, which might be easily compromised by your emotions when she is devoting so much time to your personal needs.
To be blunt, I mean this: Don't fall in love with your nurse; she cares for you because it's her job; and if she's good at it, that's the way you want it, too.
May God bless you!
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I had a cousin with MS. She had blackouts when she started. As a floor RN, she had to quit her job and go on SSD. Stress was a bad thing for her. God love her husband, he worked and came home and did it all. She had remissions and during that time would travel with her husband. She had a skooter to get her around. A nother person I know was worse at the beginning then later on. She had respiratory problems in the beginning, my cousin later on. I think the meds have gotten better since my cousin. So I agree, its finding the right med. You r young so you may bounce back quicker. Like said, if ur uncomfortable with a woman, ask for a man.

Just one thing, remember your wife is on this journey too. She will have stress just worrying about u and added responsibilities. Be patient and try not to snap at her. Its found that the patient will take things out on the person they most love. There will be changes so make it as easy as u can for her. Stubborn is good in some ways, like telling your self you are going to overcome this, but not in others. Listen and appreciate what she does for you.
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Chris1974 Jul 31, 2018
Thanks for you reply. You did bring up something that I have thought about but haven’t mentioned on here. I love my wife and I know she loves me. She did a great job this summer taking care of me and knowing she gave up her summer break spending most of it helping and doing things for me shows how much she does love me. However, saying that there was a few times where I did and she did snap at me. You always want to think that your spouse will be there for you when you are sick, injuried or become disabled but they are your spouse they have other responsibilities other than taking care of you 100 percent of the time. Take my really bad days it is hard on me because I need more and while I know she knows and realize this she still have other things that must be done. Thankfully while all of our kids are at home our youngest is 16 and the other two are 19 and 21. Even though they are mostly all grown they still need things from their mom. She has ailing grandparents that needed her at times so yes there was some snapping at times but I think overall we both did really good at having patience with each other. I worried about that with my home care nurse but I know it is her job and I hope we will have the patience we both need. I told her today that I will not take advantage of her. I don’t want her to wait on me hand and foot. I will do all I can for myself. Yes my really bad days I will need more help and more support and she understands that. She is bringing me a urinal, bed band and supplies for a bed bath for those really bad days. I hope nothing like this happens with her because I’m the end this is a good thing. Thanks for your reply and suggestions it is very appreciated.
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I’m so sorry about your diagnoses. Give the nurse time to get to know you and visa versa. I understand it feels like an invasion. When my hubby came home from 4 months in hospital and rehab, we had therapists and a Visiting Nurse. Someone was here almost every day for 6 weeks. By the time the therapy and home health nurse stopped, I had formed a real and grateful relationship with all of them. I still miss their help.

You are a young man and I understand that having a strange female watch you shower is very uncomfortable. Bear in mind that she is a professional and this is nothing new to her. The old “you’ve seen one, you’ve seen ‘em all” thing. She has been trained in maintaining the modesty and dignity of her patients and she understands your nervousness. In the event you cannot reconcile yourself to showering with her present, you can always request a male bath aide.

You and your wife have a lot to deal with and I wish you well. A dear friend of mine, who was also a teacher, was married to a man with MS. He is a psychiatrist and continued his practice even with the disease. Nothing got those two down. They faced every challenge with determination and love for each other. You will too!
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Chris1974 Jul 31, 2018
Hello and thanks for replying it is very helpful. I know how challenging this is going to be just not the MS but having to rely on someone to help me do everyday routine tasks. The nurse was here today and we had a long talk about everything we expect from each other. One good piece of news I guess is that she will be here from 9-3 instead of 10-2 so that gives me a couple of hours with help. We did discuss how I would shower and what I wanted and felt comfortable with. She said everything we do is based on my comfort level. She told that she would do all I needed done or she would do as little as I wanted her to do. I told her my biggest concerns in the shower was falling and washing myself from around my knees to my feet. So she told me she would stay in bathroom right outside the shower and would wash my legs for me. She also said that she would respect any level of modesty I choose to have with her so to not think wrong of either way I wanted to be. So that was very helpful and put me at ease with that. Then I told her my goals and plans. I told her about a year ago I started getting these symptoms and now I’m to a point of needing help and barely walking. I’ve been told by doctors and MS patients once they find the right medications with the right dose it should help me and there is a good chance I could love a much more normal life. So I told her with hopefully happening and with her helping me with my therapy each day then this time next year or sooner I want to be able to at least work part time and no longer need help with everyday life. Thanks for your comments I do appreciate them and they were helpful.
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