Caregiver

By St. Jude Latest Activity September 13, 2016 at 12:53 am Views 1,385 Replies 5 Likes 1

St. Jude

My spouse has suffered with MS for several years. I have supported him
From the beginning and still do. We have had many difficult times due to
His own insecure issues. I am his caregiver and wife. I find it very difficult at times because of lack of communication. Everything I do for him is always wrong, always complaining about something never appreciates the fact that all the responsibility falls on my shoulders since he no longer can drive, never learned computer skills, even though we tried a class together. (That was a disaster, kept interrupting during instruction). Can't follow a movie, instruction even when people are explaining something. Very frustrating. Have tried several times to go
For an eval to help find out where he is having issues and refuses.
Is very parinod, has bi polar tendencies, repeats, is angry and sometimes aggressive. Our personal relationship suffers, due to his refusal to get help. I have seen a therapist and even took meds to help me with stress.
Every year he seems to get worse and won't help himself. He says I don't motivate him. Excuse me, but I have been trying for the past 15 years!
when a person can't take responsibility for ones self and blames others for his own actions! There is definitely something wrong with him!!!!!! All de does is push me further , and further away! I am at the point where I wonder if there is any return ??! I feels it is hopeless when a person is set
In his own stubborn ways, refuses to get phychological help to better himself and out Marriage. Sleepless in caregiving!!'

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Replies (5 replies)

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  • jefff
    jefff November 30 at 9:30 am   

    Hello again St.Jude,

    As I mentioned in my introduction (belated and sorry) above, I'm an Advocate for the MS Connect Site and I'm very grateful to Dr Gary for replying approximately 2 months ago…I hope it was useful and helpful to both you and your husband.

    I'm in my 16th year of being diagnosed with multiple sclerosis and have been homebound for the past 4 years now due to the disability factor of MS. My wife takes care of me and works full-time as a Paralegal for roughly 50 hours a week. I try as hard as I possibly can to ensure her needs are met as my Caregiver, meaning I'm still able to clean myself, prepare sandwiches or a bowl of cereal for breakfast and then she usually prepares a meal for dinner. I would be totally lost without her and I know there are times when she feels like I shut down and I don't know if that's my convenient excuse or not. I view it as me allowing her space when she comes home from a long day of work, but there have been times when she has asked me if I still love her which breaks my heart because I can emphatically that I do without hesitation, but I don't always communicate that to her and maybe that's a little insight into what your husband is feeling as well. We (or at least me) MSer's try NOT to bother anyone for some reason and I've heard this from other MSer's as well…not an excuse, just the truth!

    I'm sure your husband loves you and appreciates all you do for him, but doesn't know how to show it because like me, he's (we) lost his independence and that hurts me probably more than anything because I'm so limited with what I can do to be the Caregiver of my family and especially my beautiful wife (i.e., can't drive either due to seizures/tremors, need help showering some of the time, find it difficult to clean the house due to an inability to use the vacuum or other cleaning utensils, ER trips whereby the Docs' look at you funny because all they can say is that's just another level of progression with your MS, etc…).

    He's in there and cares about you, but while it may seem and be difficult at times for you to understand…you can ALWAYS vent your frustrations/concerns to me or Dr. Gary!

    We're here for you, so please use us and stay in touch…we care!!! jefff :-)))))

  • Paolade
    Paolade November 17 at 10:16 am   

    Hello… I kinda in the same situation but my husband is not that bad yet he still drives around and do his things by himself … but is hard because he always depressed or angry and is always my fault whatever happens to him, I try really hard not to be affected because I know is the ma talking but he's so bipolar you never know when is gonna be a good day or a bad one. I care about him a lot and sometimes he forgets what it means to me. So hang in there he needs your support and your companion.

  • Dr Gary
    Dr GaryCA September 24, 2016 at 10:35 pm   

    Hi St. Jude. It's great to meet you. I am glad you are here. And you picked a good nickname. You certainly qualify for sainthood. I am a therapist, and work with clients who are living with chronic conditions and their families. I have often talked to caregivers who feel the same way you do, so you are not alone. It's hard to live with a chronic condition like MS, which takes such a toll physically and may leave you having to be dependent on others. Having said that, it is also so hard to be a caregiver for someone in this position. Everybody feels helpless at times. And the day to day challenges bring up a lot of feelings. From what you describe, it sounds like your husband could indeed benefit from meeting with a mental health professional. It's clear that you have tried and he is not willing to listen to you. Of course, you can't force him to make this decision. But it might help to give him gentle reminders of your concerns about him, as well as your concerns about your own mental health. It could also help to enlist others in this effort. You might meet with his doctor, or go to an appointment with him, and talk to your doctor about what you are observing and experiencing. Hearing this from his doctor might help. Ask his doctor to lay it out for him, and to suggest treatment options. If you have family members, you might also enlist their help. It's important for your husband to know that you can't be there for him in the way he needs you to be, and you want to be, if you constantly feel exhausted and emotionally abused. I am glad you have reached out for help for yourself, that is taking good care of yourself. I hope you will keep involved in getting your own help. Again, I would ask his doctor to be an advocate here. So sorry you are going through this, I really am. And I hope you will stay in touch with us. You are not alone.

  • Kansas Terri
    Kansas Terri July 17 at 11:43 am   

    I have had MS for 13 years, and it sounds like he is mad at himself and taking it out on you. And, it takes a real effort to not complain to my spouse: it is meant as sort of an apology as in "I am not lazy but I really cannot do it", but he does not take it that way so I have learned to keep my trap shut.

    Warm cyberhugs to you!

  • Dr Gary
    Dr GaryCA August 25 at 1:41 pm   

    Hey Kansas Terri, thanks for the reply. I think you bring up a good point here. When you're frustrated, it's hard not to strike out at your partner. Hope you are doing well.