Care givers, where are you?

[Fancy1959]

OK caregivers, we know you're out there. Your our support staff, our strength and sometimes the only thing that keeps us sane. We want to hear from you. Do you have questions or stories you'd like to share? When we write a post we would like to have your opinions of them. Please become a part of our chat room. You have so much to offer. Our story is not complete without you. Where are you?

[erash]

I asked my "care giver" to post something. Instead he is sending a message thru me 😊

Important to ask for what you need. He can't read my mind (yet).

[Jesmcd2 CommunityAmbassador in reply to erash]

Well why can't he?

[Hidden]

OK, I'll bite! I am the caregiver for "S," who was diagnosed in 1964 (that makes it 52 years ago!) while in college. Her symptoms, at that time, were numbness in her hands and feet. We have been together for about 16 years. When I first met her, I do not remember her having a limp. In the ensuing time, she has progressed to a cane, a walker, a rollater, and now a wheelchair. She is the most uplifting, positive person I have ever met in my life. Does she get frustrated? Yes. Do I get frustrated? Hell yes! But we're still together! If anybody has any questions as to how we attack situations, I will try to respond. Our best to all!

[Fancy1959 in reply to Hidden]

Peter_H, i' m LindaMSAA and wow you are going to make such a difference in our chat room. You can answer questions and fill in so many holes that we have had for so long about the perspectives that is uniquely seen through caregiver's eyes. You are an untapped wealth and please stay with us and freely respond to any post that the caregivers point of view would be beneficial to have. Please tell "S" that you are lucky to have found each other. And tell her that together we are stronger so we look forward to your continuing post and activity in our chat room.

[Auntiesusie]

I'm a care giver for my husband. He was diagnosed in 2014. He has drop foot and gait issues. My biggest issue is knowing when to help him. If I offer he says no, but I see him struggling and want to help.

[jimeka in reply to Auntiesusie]

Hi Auntie Susie, my husband offers to help me but I need to keep my independence as long as I can I understand where both of you are coming from. I know for e.g. Putting my socks on, it would be quicker if I let him help, which he is willing to do but at the same time I have a feeling of failure if I do not continue to do it. I know it's hard and frustrating for everyone but ms is a whole different ball game, a learning curve for everyone involved. Blessings Jimeka

[Hidden in reply to jimeka]

If it were me, and I had the MS, I think I would allow my caregiver to help in order to save my strength. It's better that way. I know it is giving in, but if you waive the two, it's better to save your strength.

[Hidden in reply to Auntiesusie]

That is very typical. Susie was that way for a long time, but now appreciates every time I step in.

[6422 in reply to Auntiesusie]

Hi, I am a care partner for Connie, my wife. I have clinical depression. So, when I am down she provides up lifting support to me. It mind and body supporting each other...we have been together for 38 years, so we can sense subtle changes in behavior and provide empathy. It is mind and body working together. We don't have ask for help from each other. We are not going to give up our time here on earth worrying, we are going on as one whole entity.

[Fancy1959]

Auntiesuzie, Jimeka is a very wise woman. I also have MS and recently my diagnosis moved up to secondary Progressive and I'm not doing as well as I did even at the first of the year. I too fight for my Independence just like Jimeka said. It might take a caregiver 10 minutes to get dressed and I had better allow myself 30 to 40 minutes to do the same activity. It becomes frustrating beyond belief. I'm sure your husband he is also extremely frustrated and trying very hard to hang on to his independence. All I can suggest for you is to be close by in case he needs something. Check on him frequently when he's out of the room and most especially when he is bathing. Smile a lot to let him know you still love him and enjoy being around him all the time no matter if he has MS or not. And whenever possible try to give him positive feedback such as " I had a really hard time doing that today myself or perhaps boy those bottles were hard to get off today I couldn't get mine off either." I noticed my close friends and my family often say things like that to me and I know they're doing it to make me feel better. I had to smile at them and thank the dear Lord that I'm surrounded by such caring people. Thanks for replying to our caregivers question. We decided that we were missing out on input from a very large and very important part of MS community. I would like to personally encourage you to reply to any post that is pertinent to what you're dealing with or you have information about. We're glad you're here and remember together we will find a cure for MS. Together we are stronger! LindaMSAA

[6422]

We are here for our loved ones. Being here for my wife is my reason for being. She has PP and we are hopeful that someday soon there will be a treatment for her. I feel that every day is a blessing and we have heartfelt love for each other. Make every minute a testimony of our love for each other.

[jimeka in reply to 6422]

Beautiful

[Fancy1959 in reply to 6422]

6422, it's Fancy1959, I've never heard more heartfelt words than what you just spoke about your wife. I would encourage you to please continue replying and being active in our chat room if for no other reason than to learn more about what's going on in the MS Community that could possibly benefit your wife. The strength and love you emanate are very vibrant and they will continue to inspire others to follow in your footsteps. I believe you have wisdom that can be beneficial to many including myself in this chat room. Please remember we are stronger together and together we will find a cure for this dreaded monster that has invaded us and our loved ones.

[Jesmcd2 CommunityAmbassador]

Welcome our caregivers, Hidden , Auntiesusie and 6422 thank you for joining us and giving us your perspective on the other side.

Ad l am newly dx'ed this is an interesting topic for me. Since my boyfriend and l also have only been together for 4 yrs and ms is new to both of us. And has a way of starting arguments Take 2 very stubborn ppl and well you get fire works.

I am learning to ask if l have to, but l dont like it. And not sure how to change that. Any suggestions?

Jes ♡

[DogMamma]

Here I am, Dogmama! Been here before. As an MS care giver, I check in on this forum occasionally. My husband, diagnosed 2004. We now know in respective that MS had been making itself known in our lives for awhile. We have been married 35 years. This man ran 10 miles2/3 days a week, worked out at the gym other days. We watched our diet. You know, felt we were living a healthy lifestyle. Had dreams of traveling, seeing the world after retirement! AJ started having blurred vision first time summer 1999, doctor treated him for stress! Then tingling sensation in left hand (he was a leftie) - diagnosed with Carpal tunnel syndrome! Operation for CTS! This was 2000. Doctor came out and told me there was NO!!! CTS!!! But he "snipped" the nerves anyway!!!! NEVER DID ANY DOCTOR SUGGEST MAYBE WE SHOULD SEE A NEURO. Now we know, blurred vision, tingling sensation left hand, the fatigue, and the foot slapping on the floor.!! Oh, yes, headaches. We continued on our way. During all this he retired he was sooo tired. We moved across country back to family and friends. He took a year off, then found other employment. Our life was back on track, I was able to find employment. We thought all was well. Then it all started again! Frankly, if he had not fallen off a ladder at work, we might never have found the diagnosis of MS. Over he next few months after fall, the WHAM! Huge pain in back! Off to internist doctor who had been aware of second incident of blurred vision. Summer of 2004! Appointment made with Neuro! MRI came back, yes, need a small operation in back! BUT, then the ball dropped! The MRI not only back but brain as well (thank goodness). Possible MS lesions! Spinal Tap confirm. So now we had a diagnosis of MS and need an operation on lower back! OK! We can handle this, right! Started COPAXON!(think I spelled that correct) Had back operation. Oh yes, We had 2nd confirming diagnosis. Definitely MS. Alright! We have done what we could do, just another page in life. AJ keeps working and doing his exercise routine. Not jogging as much, naturally.. Next year, 2005, he started having pain/pains in right side of face! Diagnosed with Triginal Neuralgia!! Neuro treated with Gabapentin and other meds that treat nerve pain. We learned that TN usually last a month or a little longer, USUALLY, AJ's never went away. Finally, 2007, AJ retired, filed for Disability! Between MS and TN - nightmare. Neuro put him on TYSBRIE (once a month IV) - this made him ill!! Then last Rebif. In 2009 GAMMA Knife for TN, no pain for 6 months. TN came back with a vengeance. ME symptoms getting worse.Progressed from RRMS (2004), RRMS Secondary Progressive (2007). Now it just seems AJ has one relapse after another. My job was downsized In 2010. Probably the best but I was trying to hang In until I turned 65. In 2011 March the doctor recommended inserting Baclofin Pump, unfortunately, the catheter was inserted in between L3/L4 in the spine, the very place operated on in 2004!! April, 2011, AJ had a Crainal Decompression for TN! We were told people who had this operation could loose their hearing (1% in 99%). AJ is now totally dead in right ear! It seems that the TN is gone but in its place, continual nerve pain in his face(like little needles) and this pain affects is right eye too! Then the MS, in left leg - drop foot, left leg weaker. Left hand affected. If one did not know it would seem he had had a stroke. He has not, it's the MS. AJ does use a cane. For him that was a big step to take, accepting the cane. At this time he is not on any MS meds, as such. Stopped Rebif beginning of 2015. 2015 was the year of the back! January - operation on spine (this is were we find that Baclofin Pump catheter was inserted in L3/L4!) During operation catheter was "accidentally" loosened! 2 weeks free of back pain! Exactly 2 weeks - EMTs had to come get him to Emergency Room! He could not move, could not walk!! Sent him home after a few hours and a couple shots of morphine. He still could not move or walk! Transported back home, 5 hours later, called 911 again, per doctor. Back to ER! End of that day admitted to hospital for 6 days. Test run on pump. Was told "pump ok!" . Five days of IV's - morphine, steroids and his regular meds. Home! Hardly walk! All the stress caused more fatigue! Set up to go to physical therapy. Twice a week! Finally after about 2/3 months the PT questions why is there this small "lump" at site of surgery!

[pamgarner in reply to DogMamma]

so,so sorry,what an ordeal.truly makes me think I have no complaints.prayers for u 2

[DogMamma]

Dogmama to finish story. The lump was Baclofin and spinal fluid leaking out of spine. June, 2015, another surgery to reconnect catheter that had been loosened in January's surgery (doctor had used surgical glue then).June it had to be surgically sewen. In this surgery the nerves in AJ's back has been smushed together. 2nd opinion from Neurosurgeon, if she tried to fix, AJ more than likely loose use of both legs.After he has fought so hard to keep walking. So he lives with this back pain, facial pain, and fatigue plus whatever else MS might have in store. He hardly goes out except to Doctors. His life is here in this house, me , our dogs. AJ has a routine - coffee, shower, breakfast, nap. Mid afternoon seems to be best time for him. I always worried about keeping up with him in our older age. He is 7 years younger than me. Is this the end of story - NO. We keep on fighting, looking, searching for help. As a care giver who loves her hero, some days are really hard.

[Fancy1959 in reply to DogMamma]

DogMamma, it's Fancy1959, welcoming you back to this chat room. I encourage you to please continue your story and to interact with us as often as possible. As a caregiver you presented a totally different Viewpoint that people like us who are affected and living with MS can understand. Your hero's journey sounds in measurably more difficult than it should have been. It's so hard to understand when you take such good care of yourself that something like a mess could insidiously sneak into your body and attack you. Kind of blindside you without your knowledge. I too took exceptionally good care of myself. I kept my weight loss I was physically extremely active, a backpack with the scouts,, rode horses an incredible amount, play competitive volleyball, and ran a horse farm. By sharing our adventures, our successes and our failures we can learn from each other. Again let you know we are here anytime you need us. We are just a post away. What is your husband's current diagnosis as far as his MS? I have moved up to Secondary Progressive myself. There are some new treatments that have hit the market this past six to eight months and there is another one due to be approved, specifically for secondary progressive MS in early 2017. So there are cures and different treatments in sight we have to make sure we stay positive, keep your hero positive, and let him know that the community is working hard trying to find a cure for this monster that we've all been attacked by call MS. Please stay in touch and remember together we are stronger!

[Jesmcd2 CommunityAmbassador]

Hi DogMamma thank you for replying! I'm so sorry that Aj's MS has progressed the way it has. Its wonderful to know that he has such a support with him tho!

I wonder about you tho and all caregivers. You all take on so much for us, but who supports YOU? 😕

You have taken on helping your Hero, whereas I'm sure he sees You as his 😊

Jes 💞

[DogMamma]

Jesmcd2, Thank you for responding. 😊💗 I am sure neither could do without the other. I worry constantly about him. He a very determined not to use a wheelchair or scooter, even to go out. If he would use one of other it would save his energy and we could at least do something. But this must be his choice. Sometimes he calles me "helicopter wife"! Some days are harder than others. I have Fibromyalgia and OA. But being here for AJ is the more important. If we could get Caregivers on here I am sure that would be a very good thing! The problem, as I see it, I believe Caregivers have a very hard time expressing their feelings. We, I believe, feel a sort of "guilt" if we say anything that might look like we are complaining. We do not want pity anymore than our love one that we are Caring for. But we do need an outlet with people who understand. Most of the time Caregivers are on 24/7/365. If we go away for just a few hours, we worry. Feel that we MUST get back as quickly as possible. AJ would never accept anyone else, because he feels he can take care of himself and he can, he is able! But there are things he can not do, now. I worry constantly. On top of this, my one really close friend, been friends since we were 18, has MS too, Diagnosis 1997/98!! She and I have always been each other's support system. Still are! But there is just so much I can dump on her, under the circumstances. Well, here, again I have just run on an on. Thanks for listening. Mary.

[Jesmcd2 CommunityAmbassador in reply to DogMamma]

DogMamma We are always here to listen☺ I can't even imagine where your coming from. All l can do is try to understand. And give you virtual *hugs* Please feel free to us as your support system!

You have taken on so much, but you have to take care of you also. Have you does out the mass web site? They have info on caregiving.

As some one with MS, and stubborn and very independent. I have a tendency to get frustrated with my bf when I can't do something anymore and have to ask for help. I know he gets frustrated with me also because I forget everything, ( or l just don't listen to him 😁)

Check out MSAA they have a wonderful lending library 😊

mymsaa.org

Toll Free Helpline [phone]. ext. 154

Jes💞

[DogMamma]

Thank you again. I guess what we need is a Care Givers group. I am sure that there are many of us out there not just for MS care givers but all Care givers. The ones that I have checked out so far seem to be Care Givers that take care of their parents. Believe me, I have been there too but 24/7 except when Mom was in hospital. She passed 3/1994. Never dreamed at that time AJ would have MS. Thank you again. And many soft hugs to you too. And thank you for listening and caring, Jesmcd2. Mary