Help with depression/ frustration
AnonymousJuly 18, 2007 at 11:43 pm
My mom is getting really depressed and really frustrated- what can my family members and I do for her??? We know it’s awful and it’s a long healing process, but there doesn’t seem to be much to say. I keep trying to remind her that she really is slowly getting better whether she feels it or not, but that just seems like words without meaning to the person lying in the hospital bed. She still has her trach- it’s been, what, 6 weeks on the trach now? They have started her PT and OT and I guess she’s got things in her hands to keep them open and some kind of boots on her feet to keep them straight. She can’t stand these contraptions. I feel so helpless in offering her hope. (I guess I’m depressed and really starting to get angry about this too!). Can anyone help me do what is right for her???
AnonymousJuly 19, 2007 at 2:08 am
Thank you so much for your message- that really helps. (I’m having a bad night myself just thinking about her). The problem is she can’t talk with the trach and she’s really shy and doesn’t like to draw attention to herself. I am going to visit her next month and plan to arrange to have a liaison meet with us then.
Thanks, Jerimy! You really made my night!
AnonymousJuly 19, 2007 at 10:21 am
Good morning Jenn.
1st get rid of all the negitive feelings and the thoughts of doom. I hate to tell you it will not happen. Your mom wants to get better but if all she hears is doom she will say why fight. I may as well cross over.
I was in doom, self pity,poor me,but I decided to fight. Yes every day I looked for improvement and I looked till I found it. One thing I did not want was visitors. I retired from a hospital and I saw the visitors with looks of doom on their face. (the last thing we need)
The care giver is the giver of hope and happyness and honesty. You cannot make things change as we all would like too it will happen in Gods time but she WILL GET WELL.Do not stay the whole day a few hours visit was enough for me. Tell others that visit to come in postive happy and if they cannot stay away.Remember we went from normal to GBS in hours,days,weeks,How would you feel to be walking this morning and crawling tonight, We have. A care giver is our gift from God to the pt. think postive let her do what she feels she can do and do not patronize her. SHE IS GETTING BETTER. I turn myself over to my God and said I will do as you guide me now I am in your hands. and I still am and I am walking and I am giveing back to other GBS pts. so think POSTIVE stop this though of doom it will disappoint you as it will not happen. We all love you and will give to you but we will not patronize anyone. now take a deep breath smile and yell she is going to be well My prayers are with you every day (Steve)Jenn please read my reply to Shelly.
July 19, 2007 at 11:58 am
YOur mother will heal in time, but right now it is you I worry about! I too was very depressed. This is awful to even admit, but, I wanted to call it quits with all of us. Thank God I had phone numbers of Ali, Jerimy, Shannon, Cindy, Kassandra to help me through this dark hour.
I was able to get through the sad period and focus on acquiring information on what to expect for the future. I obviously still search, because here I am today. It was very helpful for me emotionaly responding to others on the site.
Are all decisions and responsibilities on your shoulders? If so, maybe you could ask other family members to help out.
Maybe temporarily, you could go to your doctor to see if you could get something for yourself to help you through this awful time.
Be strong, things will get better, maybe slower than you had hoped for, but they will. I never thought Kevie would be normal, and now a year later (Aug 15th was actually the first time he tripped) things seem to be getting back to normal. There is hope, I can still see him in the hospital bed, this poor pitiful beautiful child, lost confused and not knowing what was happening, and now as I am writing he is running around upstairs terrorizing the house!
It must be hard to be the child and have to take care of the parent, but I know you can and I know it will make you a stronger, caring more loving person. As your mother heals and becomes stronger and is able to communicate, think of how proud she will be when she thanks you for all of the love you have shown her.
Be strong and come here often for help and kind words! I will pray for your family. Prayer does work!
Dawn Kevies mom 😮
AnonymousJuly 19, 2007 at 5:46 pm
Jenn I am going through some rough times myself and I am getting some temporary counseling until I can get in full time with somebody. I am waiting for my family DR to write out a prescription for my depression he needed to check what would work best with my other medication.
Talk to somebody get some counseling to help you through these tough times.
AnonymousJuly 19, 2007 at 8:42 pm
Hi Jenn: I think we all go through those dark times, especially while the disease is in progress. What I wanted during those moments was not for people to cheer me up, but just to listen and acknowledge my pain and fear. As a caregiver it is tempting to take on too much responsbility and not let the patient have the feelings that are appropriate. It is hard to see a loved one suffer and feel hopeless, but just being there and saying I understand sometimes is the best medicine. I felt so alone that having my wife just be there was a great relief. Most importantly, as others have said, take care of yourself. My wife told me in the middle there were days she could not come to the hospital-she just needed a break. It was hard on me but the best thing she could have done-just to stay sane herself. So take care of yourself, and remember that most people do get better, to one degree or another. Hoping it all gets better soon, Jeff
AnonymousJuly 19, 2007 at 11:28 pm
Thanks for all the great info. The thing is- I’m not really the caregiver- I’m the one 3000 miles away with images of her just laying in the hospital bed. I think of her waking up in the middle of the night all alone. I read through so many of these posts, and I just worry about her. I know she’s in incredible pain and I know she’s getting depressed and she’s withering away, etc. I’ve been sending her cards and letting her know about all of you and let her know it’s just a slow recovery. She’s the caretaker in the family- I know that instead of concentrating on getting well- she’s worried about all of us. My family is with her- and I’ve tried telling my dad to take a break and not spend so much time with her and not to wake her (why he does, I don’t know!) and to not touch her (I know just a simple touch hurts her).
I just have periodic break downs because I’m so far away and I just miss her so much. Since my friends around here have done some research about GBS, they know she’ll recover and I think they’re getting a little tired of my random crying. So, this has become my place to vent and get advice, and amazingly “meet” some of the truly nicest people.
This has brought me back to church- my mom’s biggest dream for me! I can’t wait to tell her next month.
Thanks so much for just being out there and understanding.
July 19, 2007 at 11:46 pm
Just a silly thought, what about making tapes for your mom to listen to when you are not there. Tell her what you are thinking, feeling, what you have learned about gbs, what she can expect, that you understand her pain. You get the picture. Walk around with the tape player and include her in your mundane everyday activities, tell her that it is her turn to be cared for. Express how you feel about not being able to be near her. These things may help you as well as her. Mail them to your dad and ask him to play them for her. I bet it will make you both feel near each other!
You are so right, people DO NOT UNDERSTAND! My own husband, Kevies dad, does not understand Kevie has limitations. He also does not understand my emotional distress and spontaeous tears even when Kevie is in full normal mode! He doesn’t get that at that moment Kevie is great, but that he might pay for it later. The best advice I can give you for dealing with others insensitivities to your feelings is *FORGEDDA BOUT IT!* WOrry about yourself and your mom! Your real friends will be in your corner when you need them. Take a picture of you and your mom next time you go and show it to the insensitive people. I believe that everyone deserves a chance. So if you show them the condition your mom is in, they have no choice but to be by your side in your times of sadness.
Be strong and enjoy your visit with your mom next time you see her. Tell her we care about her. Tell her Kevie is better, tell her she will get better.
Dawn Kevies mom 😮
AnonymousJuly 27, 2007 at 12:55 am
Sorry to hear your Mum’s feeling this way. The problem with this illness is that nothing prepares you for it and there is a no quick fix on how to deal with it either. I’m a big believer in positive thinking and mind over matter and no matter what happens in our lives we will all be tested one way or another and we have choices. You can choose to self pity or let it get the better of you or you can choose to accept what you’re faced with, keep a positive outlook and move onwards and upwards. When I was in the dark stages of my GBS I made a point of never letting myself get too down, I’d allow myself those bad days and then I’d pick myself up again and put a smile on my face and get on with whatever needed to be done to get myself well again. I truly believe that is why I have come as far as I have and recovered as well as I have. Another couple of things that helped me was I always thought that there’s someone far worse off than yourself and don’t fret over ‘why me’ because it wasn’t going to change it or make it go away.
When you next visit your Mum, might I suggest you talk to the Consultants and organise to have some counselling for both the family and your mother and see if there is GBS support person that can be arranged to visit your Mum and give her support. I had both these available to me when I was in hospital. Even though she can’t talk (which I couldn’t either) you can use other methods ie a letterboard that you point to and she indicates the letters so you can form words and sentences. If she has any movement at all, she can find certain actions to communicate what she wants or needs (even if it’s a blink of an eyelid or a slight twitch). I did both of these and they were very helpful.
You’re Mum will recover in time, but patience is the key here and when you and the family/friends visit (even though you’re angry and frustrated), try to be upbeat and positive for your Mum’s sake and encourage and praise all the little things she does because it all counts at the end. I know it’s frustrating times but you will all get there.
I hope this helps in some way and remember we’re all here to help support you and your Mum. All the best 🙂
AnonymousJuly 27, 2007 at 2:33 pm
I take Ritalin and Zoloft together and have had excellent results. Just wanted you to know.
[quote=suewatters1]Jenn I am trying to get my family DR to give me Zoloft. He has to make sure it doesn’t affect my ADHD medication. On adders.org DR Billy told me I should take Zoloft.
AnonymousJuly 27, 2007 at 7:43 pm
Thanks Jerimy. My family DR never called in a prescription for me at all and went by his office and he is on holidays till Aug. 7. I am going to see another DR at the same clinic on Tuesday for my ears and maybe get steroids for that and will ask the DR about Zoloft.
Will email you a question about it.
AnonymousAugust 3, 2007 at 5:55 pm
Hi Jenn. I’m a daughter with a mom with GBS. I’m near her and one of her primary caregivers. My sister and brother both live out of town and struggle in a very different way than do I. I get overwhelmed with the physical/emotional burden of living it daily. My siblings get overwhelmed with the emotional burden of being away when you long to be near. So many of your feelings are normal – very normal for the loved ones. Maybe if you try to look at it from two angles. The first is from the emotional angle and you and your mom’s need for emotional support. It’s important that you allow yourself time to adjust to this trauma that has come into your family’s life. Even though your mom has the disease, you too area big part of the story. You will reel off and on for a good while in the beginning. Then you’ll settle in for the long haul. Make sure you have a good supportive outlet – friend, family member, faith leader, professional counselor/psychologist – to whom you can bounce your thoughts and feelings off of. It is vitally important to your mom that she only deal with her “stuff” and not have to deal with your or anyone else’s stuff.
The 2nd angle is from a more practical/functional angle. Would feeling like you were more actively participating help you feel better? If so, then take advantage of the many great ideas you can find on this site – like the one above about recording your voice. In our initial weeks with GBS in our family I found it helpful to busy myself with things I thought might make my mom feel more comfortable. Some of them are stupid, perhaps. My mom now doesn’t even recall many of them, she was so sick. But here’s some of the things:
1. Keep an updated sign up that says, “It is Friday morning/afternoon/evening, August 3, 2007”.
2. Send an extra soft, pretty (real!) pillowcase for her hospital bed.
3. I pinned a beautiful swath of fabric to the curtain around her hospital bed – her colors, her “style”
4. Hang a good photo of her above her head to remind nurses and doctors that she’s a vibrant living person
5. Create a collage of family photos – change them out frequently. Hang them in her line of vision.
6. I actually bought a valance at Target and hung it over the window in her acute care room – better than hospital mauve any day.
Just some ideas – but maybe they can help you feel important in delivering hands-on care to your mom too. Hang in there. You are about to discover how incredibly strong and resilient you are!
AnonymousAugust 5, 2007 at 3:47 pm
Katy- thank you so much for the ideas. I have started a collage for her and I already have the photo picked out of her (it’s my screen saver on all my computers now!). I’m going to bring it all to her when I visit in two weeks. I’ll ask her again about bringing a nice pillow and stuff from home for her. She hates hospital white, but anything I bring to the hospital for her will be thrown out when she leaves, so it can’t be anything she really likes. She hates the reminder of the hospital. Great ideas though! I appreciate it.
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