Husband with SCA3 Me: Married, caregiver, RN and tired
It's been a long 9 months but today Google brought me to this forum/group.
Short Story: Married, caregiver, Primary breadwinner and Registered Nurse
Over the past 9 months, I've had family and strangers say to me, "It must be easier as a RN along with the role of a caregiver to do what necessary for my husband." My answer is a stare with a gentle reply of no. Everything is different and unique for the path walked while caring for my husband. His ataxia is hereditary with 3 of the 4 boys affected (including my husband).
Why I joined?
Looking for support for me. It's not easy being a caregiver who is also a RN. From a Nursing perspective, I know this disease but I do not know how to cope and not lose myself in the process. It's a struggle, some days frustrating, other days functional.
Hoping this serves as a introduction for me and why I'm here. Thanks
Welcome! I think 2 things! I don't think there is medical evidence that proves ataxia has to be a certain way. 2) I think as a caregiver it has to be ruff taking over things and running the house and being responsible for someone else. I think It is important that you take care of yourself firt like one a airplane where you put the oxygen mask on yourself then tend to the other.But saying that you can't make someone do anything. But what you can do is change the way you think and do things a bit different to change your situation. I have learned that when one person in a relationship changes it changes the whole dynamics, it just does.
As much as you might think it's easier to do things for the other person if there is a possibility they can do it themselves encourage them to. I think when you become more of an encourager it makes you think differently.
Glad you joined us here and I hope you soon feel that this is a place you can get something from. People that have ataxia can relate I think. :0)
It's been a rough road this past year and some days are harder than others.
I chose not to participate in the end months before my husband's brothers died from the same disease. Denial is bliss they say but regardless, this is where I am today.
Welcome Dallas. I think both patients and caregivers can get some good tidbits that can help you cope. If nothing else, we all share the same affliction and can really understand when you need to vent!
Hi Dallas
You’re wearing two hats, wife/caregiver and RN. It must be tough, other people
possibly think, with your background and training coping is bound to be a
whole lot easier. I bet it isn’t.
Within this site is a Friends and Family Group. You may find it helpful.
I understand exactly what you mean. I am also an RN and long to be a person in love again instead of just varying categorized "helper roles". It is as if ataxia has been triangled into our marital relationship, leaving me outside my husband's world except to help with activities of daily living. Furthermore, my husband tries to keep his Aataxia symptoms a "secret" from friends. They see the symptoms but nobody is allowed to talk about it or help in any other way.
I'm off to work soon but I'll email again later tonight. If your comfortable, I've so many questions to ask.
Thank you
wise1 said:
I understand exactly what you mean. I am also an RN and long to be a person in love again instead of just varying categorized "helper roles". It is as if ataxia has been triangled into our marital relationship, leaving me outside my husband's world except to help with activities of daily living. Furthermore, my husband tries to keep his Aataxia symptoms a "secret" from friends. They see the symptoms but nobody is allowed to talk about it or help in any other way.
Hello Dallas RN,
Although I am on the patient’s side, I do understand how you must feel. You are a busy wife/caregiver, mother, professional and you probably do not have a minute to yourself.
I am forever telling my husband to take time for himself.
I love Jeannie’s analogy to oxygen on the plane. You are told to take it first so that you in turn can take care of another one who needs help. Your own physical and mental health are number one. If you are sick or too tired to function, everybody will suffer.
I find support groups most helpful. They usually gear their meetings towards both the patient and the caregiver.
Aside from this wonderful support group here, we belong to a " stroke support group" ( my ataxia was caused by a stroke). Side effects of a lot of strokes are similar to ataxia as I am sure you know as a nurse.
Both my husband and I find it very useful to talk one to one to people who can understand what we are going through.
We sometimes are divided in two groups ( caregivers in one room, patients in the other) and we compare notes, vent, laugh, tell of our experiences… We usually come out of there happy to have seen friends who genuinely like each other and help each other and looking forward to the next meeting. Just like here, we are like a family but with a bonus: we give each other real hugs but virtual hugs are good too!
I searched online and found an ataxia support group in Irving, Texas. http://www.ataxia.org/chapters/northtexas/page.aspx?id=325 My knowledge of the Geography of Texas is very poor, but I saw on a map that it is not very far from Garland where you live. Probably 40/45 minutes drive. If you can find some time in your busy schedule, you might want to try it.
Stroke groups are easier to find. Stroke rehab centers usually have a group. Check that out too.
Also don’t be ashamed to ask family or friends for help when you need it. Your health insurance might cover some type of home care. Ask them.
Whatever you decide, take good care of yourself.
My very best wishes to you and your husband. Hang in there. hugs.
Hi, My wife is a CNA which helps in moving and doing things in a way that won't hurt me worse than I already am. I ave SCA14 with peripheral neuropathy, along with metabolic issues. Most people don't realize the stress this can cause for the caregiver. My wife and I wanted to travel in our RV and see lts of places and we do what we can, but I can't drive, I can hook things up when we go places, but my wife is getting to learn that part, but I take my scooter and help as much as possible. Jeannie is right, it has to be a team effort. I do many things that I ca do safely she sets up every thing I need for my breakfast, Than I make it myself most of the time. Only if my Myoclonus is so bad I can't do things in a safe maner, then I don't. When having a good day, we live in a small town, I take my scooter (electric wheelchair) and ride down to the post office, or to church, or to the grocery store to help out. There is a group just for caregivers that my wife is on. It's on facebook I believe. It was helped her a lot.
Dear DallasRN, I have ataxia, but understand where you're coming from, as 19 years ago, I was in your place. I didn't have ataxia at this time, but my first husband had terminal Cancer and I was his main caregiver. It was exhausting! Our two children were 12 and 14 years old and I worked as a social worker until about eight weeks (took a leave of absence) before he died. I know his illness was different then your husbands, but wearing several hats as a caregiver takes it's toll for sure! Anyway, sometimes as the one who has ataxia, I feel sorry for my second husband having to pick up the slack of what I can no longer do. Bless him though, as he's very patient with my slowness and loving, as I'm sure you are also! Welcome to this site, as there are wonderful people on here for support and understanding! Take care of yourself & your needs, as you can't be good to anyone else if you don't! I know it's difficult, but you and others will be better off if you do! Thinking of you and your husband...,
We have a lot in common. I was a registered nurse and then a medical office manager for my surgeon husband which has ataxia.
No one can tell you how hard it is to see your spouse go from a vibrant man to someone you are caring for. I thought my husband had MS about 6 years ago. He has only been diagnosed 2 years. I started making plans which my husband kept thinking I was nuts but now we live in a nice, one level condo (which I bought 4 years ago and rented out until I needed it). It's within walking distance or wheelchair distance when that comes, to many downtown activities. This makes it easy to go on short trips and still be close enough to be home in case of an emergency. My husband is still very active and sometimes I would like him to be a bit more careful but I have decided that if he dies hurting himself doing what he loved to do....good for him. We have closed his practice and sold our lovely home on Lake Michigan during the process but I am learning that things aren't that important.
My husband has the hereditary form, also, 2 of 3 boys in the family and their mother. I am also the one that helps his brother with ataxia which I have finally gotten into a Home for Veteran's I have worked 10+ years trying to get him there and then when the VA has been under the gun...low and behold they can't work more quickly to help. Totally pisses me off but I only have my husband to help now which is wonderful.
I am assuming that your husband is on SSDI and Medicare for health care. There may be a way to have more support for you with Medicare covering the bill. Check with your area senior support center or hospital social worker. Even if he isn't a senior, these support people are valuable for knowing how to get help. A senior center in my area will do day-care for caregivers to get a break. I have no idea how disabled your husband is so if I sound out of line please disregard.
If you have a few girlfriends or sisters in the area, keep up with doing something with them regularly. If you don't do something for yourself you will implode. At times the thought of ataxia being progressive and that I haven't seen the worst yet hits me like a ton of bricks. It is difficult when people say stupid things. The thing they don't realize is that we really know what is going to happen and it's killing us. We watch for the progression...we listen for changes in their speech...we try to help and are greeted with anger...we try to understand that they are scared just like we are. As I am tearing up, I have found that when my husband is crabby, I tell him he needs a nap so he knows that I am trying to survive and he needs to lay off. I found that having a "STOP" phrase (You need a nap) very helpful. We talked about it the first times I used it since he blasted back that he did not need a nap and now he knows that he doesn't really need to go off and take that nap, he just has to back off whatever is going on.
I hope this helps you since I know that it helped me getting it out. It's not easy.
Not all ataxia's progress at the same rate, state of mind plays a huge roll along with nutrition and exercise. Doom and gloom will adversely effect anyone's state of mind. One must remain proactive and positive! Spirituality is a plus! There is always hope don't loose sight of that. My ataxia has been stable for the last 7 years because I proactive and eat well. There's no magic bullet yet but tomorrow is another day!
In fact I choose to be much more positive about ataxia's of any kind! :0)
Having been introduced to wise1 and Kit, makes my heart jump for joy knowing I'm not alone.
Yes the brain knew this all along but the heart & head disconnected, probably some depression on my part. I choose to deal with this naturally, normal sleep, exercise for the natural endorphin boost & finding the sunshine in life.
:)
Jeannie Ball said:
Not all ataxia's progress at the same rate, state of mind plays a huge roll along with nutrition and exercise. Doom and gloom will adversely effect anyone's state of mind. One must remain proactive and positive! Spirituality is a plus! There is always hope don't loose sight of that. My ataxia has been stable for the last 7 years because I proactive and eat well. There's no magic bullet yet but tomorrow is another day!
In fact I choose to be much more positive about ataxia's of any kind! :0)
