Caregivers Support Group
A voluntary caregiver is a spouse, relative, friend or neighbor of a disabled person or child who assists with activities of daily living and assists those unable to fully take care of themselves. The challenges of a caregiver are unique and sometimes it's hard to find people to talk to who know what you're going through. Join the conversation and find others who...
Please excuse a little venting here. I'm having a bad day and there is no one around I can really talk to.
My wife is disabled with severe RA. She sleeps 12-14 hours a day and is in bed 18-20. On a good day she has limited physical functionality for about 4 hours in the afternoons. She's on every med there is and has had so many small surgeries I've lost count. Nothing helps but they do slow the decline, both physical and mental. She can function sort-of independently (I don't have to help her to the bathroom for example) but I do all the shopping, driving, cooking and most of the cleaning. She likes to clean and when she feels up to it will grab a broom or the vacuum for a few minutes.
I have a professional job but my schedule is flexible enough that I can take her to appointments and such with a little advance planning. I've been seeing a counselor for the last year or so just to talk out some things. My wife has just agreed to start seeing a counselor too which I am very hopeful about. She can be very grumpy. I know it's just the disease talking and not her but it does make things challenging at home sometimes.
My problem is my job. I've told my boss and some of my coworkers about my wife and some of the challenges involved but none of them get it. I need some support since I'm the one doing all the supporting and my colleagues aren't there for me. The more I reach out to them, the more I'm rebuffed. Some have housekeeping services that come by once a week. I've asked repeatedly about who they use and if I could get a phone number but they don't respond. I even specifically told them about my challenges and the isolation I feel and how a simple coffee or lunch with a colleague would help. That was over a year ago and the number of times anyone has asked me to lunch is zero. My community is a small one and doesn't have any support groups or anything for me to join. I just want someone I can get a coffee with and chat!
I enjoy beer and have always been a beer drinker. I don't drink any hard alcohol. Recently I've found myself drinking a few more beers than normal just to relax. I average less than one a day but I've had as many as 3-4 in an afternoon or evening. I've consciously tried to cut back recently and have been successful so far but this still concerns me.
I love my job but I find myself dreading going to work because my colleagues are so unsupportive and just don't understand.
sigh.
Thanks for letting me vent a bit. I feel a bit better already.
My wife is disabled with severe RA. She sleeps 12-14 hours a day and is in bed 18-20. On a good day she has limited physical functionality for about 4 hours in the afternoons. She's on every med there is and has had so many small surgeries I've lost count. Nothing helps but they do slow the decline, both physical and mental. She can function sort-of independently (I don't have to help her to the bathroom for example) but I do all the shopping, driving, cooking and most of the cleaning. She likes to clean and when she feels up to it will grab a broom or the vacuum for a few minutes.
I have a professional job but my schedule is flexible enough that I can take her to appointments and such with a little advance planning. I've been seeing a counselor for the last year or so just to talk out some things. My wife has just agreed to start seeing a counselor too which I am very hopeful about. She can be very grumpy. I know it's just the disease talking and not her but it does make things challenging at home sometimes.
My problem is my job. I've told my boss and some of my coworkers about my wife and some of the challenges involved but none of them get it. I need some support since I'm the one doing all the supporting and my colleagues aren't there for me. The more I reach out to them, the more I'm rebuffed. Some have housekeeping services that come by once a week. I've asked repeatedly about who they use and if I could get a phone number but they don't respond. I even specifically told them about my challenges and the isolation I feel and how a simple coffee or lunch with a colleague would help. That was over a year ago and the number of times anyone has asked me to lunch is zero. My community is a small one and doesn't have any support groups or anything for me to join. I just want someone I can get a coffee with and chat!
I enjoy beer and have always been a beer drinker. I don't drink any hard alcohol. Recently I've found myself drinking a few more beers than normal just to relax. I average less than one a day but I've had as many as 3-4 in an afternoon or evening. I've consciously tried to cut back recently and have been successful so far but this still concerns me.
I love my job but I find myself dreading going to work because my colleagues are so unsupportive and just don't understand.
sigh.
Thanks for letting me vent a bit. I feel a bit better already.
I also believe they feel un-equipped to help. Seriously until I lived this I couldn't have ever understood. I've talked to friends before this and they told me about taking care of their mom or dad, having to have them move into their house, the problems of cleaning and doct. appointments, the anger of their parents towards them etc. I would just sit and listen but not really understanding. I couldn't say anything because it was a different life to me. Until you live this life, "normal" people don't understand what we are all going through.
You will get stronger every day. You will meet people that have similar interest and they will be your new friends. but in the meantime, this online support group DS is great. I love learning I'm not alone!!!
I will pray for you-- believe me prayer does work.
arlene
I don't drink much - but my outlet is food. I tend to eat for comfort and from the stress. I have put on nearly 50 lbs in the last 15 years, most of that 50 in the last 5 years.
Maybe it is time to ask a co-worker to lunch/coffee, or maybe a breakfast before the work day? If they accept your invitation, try not to talk about your situation at home, they won't understand anyway.
The occasional drink is fine, tends to help wind you down I am sure, but try to not turn to drinking if you can.
I also have RA - and when I first was diagnosed and read how horrible it can be, I kept asking myself "How the hell and I am going to care for my husband and ME???" Luckily, the meds I take seem to work, but I know for many RA sufferers this is not the case. Sorry to hear that your wife is having such a hard time with her RA.
Wish I could help you more or give you additional advice, but I am at loss since you say you live in a small community. Hopefully someone else here can provide answers to help you.
As far as venting, or whining, or yelling, or just talking, please keep posting. It is a wonderful outlet for me too!!!
I can't really add to what's been said already. Isolation really is the biggest cause of sadness for me. No one understands unless they face the daily challenges of caring. I feel lucky, if i can say that, because i care for my son so my husband and I can share the burden. You guys who care for their partners...phew. i think it is especially hard for men. Women do tend yo extend the hand of friendship more easily.
I am not a church goer but wondered if you could find support in a church setting? Or perhaps find an activity you enjoy and get friendship there. I don't think you will find the support you need from other men unless they are in the same boat so for now just look for friends. Then as you get to know them you may be able to share whats going on in your life.
Take care x
I don't know which is harder, not having coworkers that get it and won't help or having too many coworkers that want to know what's going on and want to help. My problem is I'm afraid to ask for help and feel guilty if I talk about my wife's failing condition with others. I know I'm going to Ned more help and support but I'm not comfortable reaching out. I feel like no one will really understands what I'm going through; and it's not supposed to be about me, I'm not the one sick. I know that asking for help or someone to talk to isn't a sign of weakness but it feels like it. I guess that's why I'm trying to use this group, to get support without feeling like I'm asking for it. I hope it can help you in the same way.
Wow- what a tough situation with your work colleagues. I would feel the same frustration.
KiddoGal has a good idea- reach out & keep the conversation neutral. Perhaps building relationships might be a good way to open doors. Maybe "Take Charge of Change & Be Opposite" in doing some things different because they are not working in a beneficial way to you now- I can imagine many doors opening & blessings coming your way when you start by making one change at a time!
I can also imagine the unease you feel of showing up at work where no one there gets it. Please understand- I don't intend to sound flippant here- your coworkers attitudes are one of those things that you simply cannot change.
Have you read the Serenity Prayer? I find it to be helpful for me personally in accepting certain things in my life that I cannot change (like having Epilepsy, 4 busted vertebrae & being the Caregiver for a spouse with a spine injury).
You mentioned there are no support groups in your community- how about starting your own support group? You'd be the perfect person to do so!
To find housekeeping services- have you called your county board of health & asked for a few recommendations? What about paying a good neighbor or even asking your local Girl Scout Troop (middle school & high school age)- sometimes the girls earn badges for volunteer work.
You are very wise to recognize your concern about a few extra beers becoming a potential habit. You are also being smart by venting here at Caregivers! My mother is an alcoholic & I know first hand what that does to a family. However, I'm on your side- having a beer in the evening to unwind after your chores & day is done is no different than having a glass of wine for the same reason.
Best wishes & lots of hugs, MelodyJane
Best wishes & hugs to you as well! MelodyJane