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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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!
If all else fails, you can always ask for someone else, maybe a male? Only you know if having a male nurse would be better or worse. Good luck!