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Thread: New to this forum - Introduction

  1. #1

    Default New to this forum - Introduction

    Hi - I'm a caregiver for my wife of 33 years who is dealing with secondary progressive MS. We are both 54 years old and over the past 2 years she has lost complete use of her legs. I'm starting to struggle with things - just trying to cope with working full time and being her primary caregive in the evenings and weekends. I do have someone that comes in during the day. I'm already feeling the burnout, resentment of not being able to do normal things, guilt etc. Located in the Chicago area.

  2. #2
    Distinguished Community Member JanM's Avatar
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    I don't know exactly what you are going through, as I was the caregiver to my husban who has ALZ. The reason I said was, is because he is now in a Adult Care Facility, this is what I call it when Hank asks me where he is. When it's time for me to leave I have to trick him. I feel guilty about that, but...... crap happens. The only reason he had to go to a ACF is that he attacked me one night and I wa on the phone to 011 when he did, so it wasn't a 'he said/she said' I ended up with a scratch on my chin (Praise God)

    Caring for somebody in a wheelchair is hard on the caregiver, do you have children to help and are they willing and close by? Mayhaps you can tap some of their help to stay with her, just to get away for a few hours for some down time, golf, sporting events, etc.

    I wish you the best in coping with the MS, because she is coping also.
    I'm just where God wants me to be, not one step ahead nor one step behind........

  3. #3
    Distinguished Community Member Jo6's Avatar
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    Welcome BrianP. I'm glad you found BrainTalk.

    I know it is very hard on most people that are caregiver's and most have their own health problems. .I was Caregiver for my Mother-in-law. She was an Alzheimer's patient.

    After almost 14 years she passed on last May. It drains one to the point of feeling like you yourself are the ill one.

    I have many other health problems and I will say, I pressed on, trying to do the impossible. I ended up in the hospital myself.

    You have to have help or you will feel like you have lost all your ability to help anybody.

    I'm not putting this the way I wanted, but I still can't sit up too long at a time. Have you checked with Social Servises about the help they do ? Every state seems to go by different rules, but check it out in your area. I would think they would have things like doing sitting with your wife, help her do the things she can still do, etc.

    You should not feel guilty for feeling as you stated. Remember we are all human after all and can do so much. We can not do it all!

    Take care of yourself first and make time for your self. If you had someone to come in on certain days that would give you some respite time.

    You are not alone, but sometimes it feels like it. that is where Brain Talk comes in. I have some friends from way back when BT first was getting started.

    Why don't you visit the Emotional Support Forum. I go there a lot and it is a good place to start. If you have needs for other issues someone will probably there that can help show you the way.

    I'm glad you posted and hope things are getting better, but above all, I urge you to sit back and figure out a way to get on with your life.

    If you are taking care of you you will be able to care for your wife better.

    Good luck in finding some help. I do pray you and your wife find things going better.

    Take care, Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Brian))))))

    I agree that you need to make time for yourself. You are working at work and at home. You need a time, when you are not working, at least once a month.

    Contacting your local social services agency is an excellent idea. If you have a local or regional MS chapter, they might have caregiver resources or respite options. Nursing schools might have students available, who need extra money and experience.

    You would benefit greatly by carving out at least a day a month for you. More, if you can manage it, but at least one weekend day a month, you leave your home and go out and do something that interests you.

    Guilt is an occupational hazard of caregiving, so I'm not going to tell you to not feel guilty. I'm going to suggest that you manage that guilt by reminding yourself that because you need time to refuel, refresh, re-energize, do something "normal," be apart from the crisis of your wife's condition, that does not mean that you're a bad person, husband, caregiver, or that you are selfish and uncaring. It means that you are human and are being taxed to the max physically and emotionally. It means that you deserve to be cared for too, even though you are not suffering with MS. It means that you are a better caregiver to your beloved wife, if you have had some moments away from your stress. You will have more energy, and you won't feel that encroaching resentment that you've given up "everything."

    Please do yourself and your wife a huge favor, and find a way to have a break from your overwhelming responsibilities at least once a month. If your health is compromised, because you are stressed and exhausted, you won't be able to care for your wife. Taking care of you is as important as taking care of her.

    I hope you find resources to allow you the time you need to relax and rest.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #5
    Distinguished Community Member Jo6's Avatar
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    BrianP, was wondering if you had found some help yet. Not being nosy, I just care.

    Being a caregiver is a very hard job and you can wear yourself down in no time at all. Post us a note as to how you and your wife are doing.

    Many people do not understand the load a caregiver carries around. They think they are being helpful, but truth is it can cause you to feel guilty, angry, and a bunch of other feelings that you don't need to fret over.

    Just remember you have to take care of YOU first, that can be the best thing you can do for your wife. Look into some of the other forums here. there are some that can really lift your spirit.

    Take care, Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

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