New to the site, and have enjoyed so much relating to so many posts and conversations. I have been searching for a support group for Caregivers in my area, without any success and this is my first time attempting an on-line format.
My story includes being thrown into dual caregiver status a little over a year ago. My Mother-in-law (love the MIL abbrv.) was diagnosed with Pancreatic Cancer in January of 2012. Stage 2 originally, but after the whipple surgery pathology came back at Stage 3. She did not move in with us right away, however my husband's sister did. She is mentally handicapped, 45 years old, amazingly wonderful but stuck at about an 7-9 year old functioning level mentally. So she moved in with us in Feb 2012, while his mother went thru the surgery and started Chemo treatments. His sister is in a day program during the week (Thank goodness), so there was little effect to my FT job, and really just added a fourth child to my house to care for. Chemo for my MIL did not go well and she became extremely ill. In July, they took her off Chemo and pretty much said she was done. A final CT Scan showed the cancer had spread to her liver and spleen and with her weakened condition there was nothing further they could do. She had a heartattack a few weeks later, then went to rehab that almost killed her. No kidding, she was throwing up blood for 48 hours and they didn't send her to the ER. By the time I demanded her to get immediate treatment, she was already in dire need of a blood transfusion due to three massive bleeding ulcers. Which is where the decision to move my MIL also in with my husband and I came into play. I know there are some good Nursing homes available, but those are all private pay. If you are on Medicare, you are scrapping bottom for a bed in some of the scariest places I have ever seen.
So August 2012, my MIL moved in too. Never did I think my oversized 7 bedroom, 4 bath house would be too small. When my MIL was discharged from any further medical treatment to hospice in my home, we were told she would have 3-6 months. The first month was hard, she needed assistance doing everything - even getting to the bed side commode. But with proper nutrition and lots of care from 98% ME - she started to get better? The cancer is still there, but I guess her body started to recover from the devistating effects of the Chemo. But I felt GREAT - she was going to get to enjoy the last couple months of her life, surrounded by her son, her grandkids and her daughter.
Fast forward almost 5 months - she is completely capably of caring for herself, but still demands 100% "service" from me. My husband is rarely home, I have been able to work out a schedule with my FT job that allows me to work mainly from home. And even tho she is probably healthier than she was before the Chemo started she is still demanding of all her meals being prepared, the special foods I make to increase her protein and fat intake to be served to her in her room. She can get around good enough to snoop through my house, but as soon as I get home from my 3 hour work day in the office, she becomes completely unable to care for herself. She has called me on my cell phone while I am making dinner to tell me she is out of Poweraid when I know she is capable of getting it herself. Add in the caring of my special needs sister and I am 4 months past needed a vacation in a padded cell somewhere with someone pumping me with anxiety meds.
But it is not just the 24/7 care, neediness and demands. I have lost all rights to enjoy my own home. If I want to watch tv, the only room I get to have access to is my bedroom. I have gotten to the point were I hate being in my own home. I get home from work, clean, cook, do dishes, take care of meds, and all the petty needs of my MIL and sister in law without being able to even take off my shoes. My children (all teenagers 14, 17, 20 - she is away at college) hide out in their rooms or spend most of their time at friends houses.
I feel trapped all the time, my husband continues to live his carefree life as he did before everyone moved in, and just doesn't understand why " I LET IT ALL GET TO ME" - ummm because there is no ME anymore?
I get caught in anger, regret, anxiety and just want to scream. I know my MIL will be gone soon, there is no cure, there is no treatment, and I want her to be surrounded by love but I am about to lose my mind. I did start taking anxiety medication about two months ago, but it has lost most of its effectiveness.
I hate to say it, but I look forward to the end and being able to maybe get a small piece of myself back.
Have to go - my MIL is bellowing again. Thank you for the venting session. I could go on and on and on about the ungrateful and nasty way my MIL speaks to me and tells me how I run my house totally wrong, but she needs more Poweraid.
I think some of you have made excellent suggestions. Like Dr. Phil says you have to teach them how to treat you. "I cannot get your drink right now, I'm in the middle of..."
My hubby had a Meals on Wheels client who was rude, demanding, are irritating. He refused to be treated this way and stood up to her rudeness and terrible behaviour. She has improved. You must talk to this woman and tell her it won't continue. And check out some local alternatives for care, give her the brochures!
The thing I resented the most, like you, is the impact on the kids lives ... they also either camp out in their rooms or are at friends. They don't bring their friends here anymore (we have a very bad smell issue with FIL) which they find embarressing.
Interesting what Madeaa said: I found myself almost chanting the serenity prayer over and over this past month ... " God grant me the serentity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference"
Its not an easy journey this one. I find that the people I know/family really don't understand how this impacts on every aspect of our lives, as they have had no simila experiences .... but the people on this forum absolutely get it. Just reading through others stories is an absolute lifesaver and sanity checker for me too. xxx
My husband does his best to help out. He owns his own electrical contracting company and puts in long hours, plus he is a wrestling coach at our high school so this time of year is very difficult for him. When he is around his mother is of course a perfect angel. It makes my kids and I sick to see the difference in the way she acts when he is around. Also makes it hard to explain to him or get him to understand how she is when he is not around.
What is keeping me awake all night and causing nightmares is thinking about how much worse it will get over the next couple weeks/months. Right now she is doing ok and able to do minor daily tasks for herself, getting to the bathroom, dressing, taking meds, eating. But it is just a short time from now that she will no longer be able to do those things and I know it will all fall on my shoulders. I used to have a great support group at the beginning of family and friends that came over to spend a few hours with her and give her lunch while I worked, but my MIL's negativity and rude comments (Oh, you brought that for lunch? I would prefer.....) have started to drive all that support away. Nothing is ever correct, no one can do things as well as her dear "Amy". She pushes people away when they try to visit, saying her "Amy" is fine and takes care of everything. When I challenge her and say I would love the help, she does this whinny sorry and says she thought she was helping - helping by pushing away support? Are you freakin' kidding me?
She is the youngest of 5 and lost both her parents by the time she was 18. She lost her husband when she was 33 and raised her 4 children (3 boys and my special needs sister in law) without ever re-marrying. She used and manupulated family and friends to do almost everything for her during those years. She has played the poor widow card for almost 40 years, and has never taken real responsibility for herself. So it is no big surprise she is acting this way now. I think she is pushing people away to test their committment to her, to see if they will come anyways because they love her - I don't know? She plays so many games with people that is hard to figure out what her main goal is.
But then I try to remind myself, she is dying. She is scared, she is sad that she won't see her grandchildren graduate high school, college, fall in love, get married etc. She is very young, only 71. But what I don't understand is the being nasty and testing people. I spoke to the social worker and pastor from hospice yesterday and asked them to come see her again. She has fought any previous therapy and refused from day one to join any cancer support groups. They are going to come tomorrow and see if they can set up once a week visits. Hoping she will finally start to look inside herself at what she is doing to those around her who are only trying to help.
In the meantime, I continue to just get through each day. I am going to see my doctor on the 31st and have my anxiety medication increased. I have been on Lexipro for three months because I was at the point where I couldn't stop shaking and completely unable to sleep. It helped but as the stress and anxiety has increased since the holidays I am finding it is not enough anymore.
Thank you all again so much. Big HUGS to us all!!! We deserve it :)
Hope you all are doing well and finding the same little bit of peace that I am in just being able to share with others that know from their own experience. Feels good to not be alone
You should choose your important duties and screw the others. What I mean is if your MIL is not bleeding, starving, dirty, and just screaming for nonsense it's not as important as your sanity. It's funny but when you mentioned the padded room I remember "being there" (state of mind) and I thought at least I could think and rest, that thought was like a fantasy of a wonderful vacation, but, then I thought... then everything would fall apart and I'd get blamed for running away. It's Ironic now because after everyone ran away and Mom is happy in a NH going to outlive us all they are mad at me, for making decisions even though I was rejected by them. I am happy....Mom is happy... everyone else is miserable. I have to live with ME and they have to live with themselves. Please.... give yourself a break you deserve it!!!
If your not part of the solution, then you are part of the problem.
It's nice to be important, but it's more important to be nice.
If you give a man a fish you feed him for a day...teach a man to fish you feed him for a life time.
Don't judge a man until you have walked a mile in his moccasins.
I keep these quotes in my head at all times. They keep me sane...
One more ...My Personal Favorite....
Insanity is doing the same thing over and over again and expecting different results. Albert Einstein
My mother tries to get me to do simple things like bring her some water. My answer is always the same: "You can get it for yourself. I don't want you to stop moving around." I already live her life for her. I'm certainly not going to add on the hand servant chores as long as she is able. You can say, "Mom, I want you to do it, because it is good for you to keep active." Saying it like this doesn't make it confrontational. It makes it seem like you are actually looking out for her best interest.
I know what you mean about feeling angry, anxious, and resentful. Who can help but feel this way when you're trying to live the lives of two or more people? When we are going through it, it is little solace to hear things like "it will be over soon, and when it is you will feel good about what you've done." But that is true. Until then, try to share the pain, so that the others can feel good when it is all over, too. You can tell them that it would be good to spend time with you MIL while they can.
Another thing I wondered -- is there a way you can make yourself less available, such as going back to a full work day at the office while your MIL is still capable? Soon she may not be, so it would be good to get emotional reserves built back up. My heart is with you, pbigear. The suggestion of Hospice is a good one, even if she needs to be moved to facility during her final days. Many hospices have their own accommodations and they take care of the moving. If your MIL wants palliative care, hospice would be a good way to go.
As harsh as it sounds you need to to set boundaries. I am sorry your MIL and your family is going through this; however, being prisoner in your own home is not option. If your MIL is able to do for herself then let it happen. It will be good for her morale and wellbeing to stay as self-sufficient as possible. As far as the other siblings, give them a schedule for helping, especially on weekends when you need to spend time with husband and those poor kids (who have lost alot more than their privacy right now).
My Mother was with us for 2 years requiring 24/7 care. I am glad we were able to take care of her and fortunate enough to hire as much help as needed; however, the emotional and physical toll is slow to go away. You have to take care of yourself and your family first!
Best of luck and God bless! Your MIL is very lucky to have you caring for her.
As harsh as it sounds you need to to set boundaries. I am sorry your MIL and your family is going through this; however, being prisoner in your own home is not option. If your MIL is able to do for herself then let it happen. It will be good for her morale and wellbeing to stay as self-sufficient as possible. As far as the other siblings, give them a schedule for helping, especially on weekends when you need to spend time with husband and those poor kids (who have lost alot more than their privacy right now).
My Mother was with us for 2 years requiring 24/7 care. I am glad we were able to take care of her and fortunate enough to hire as much help as needed; however, the emotional and physical toll is slow to go away. You have to take care of yourself and your family first!
Best of luck and God bless! Your MIL is very lucky to have you caring for her.
I do my best to take care of myself. But unfortunetly my own health has been an issue for the past 4 years. I have had three major cervical spine surgeries, 4 artificial discs now and two titanium plates in my neck. I have chronic nerve pain from perm. damage to my spinal cord. I have been able - thankfully - to find an amazing doctor that does a surgical procedure for me every 6 months to severe the damaged nerves and control the pain. But I have had a pretty serious bleeding ulcer since October and made the BIG caregiver mistake of not making time to take care of myself. So of course, now the issue is getting worse and I find what could have been an simply problem becoming a big one. It is so hard though to take the time to care for myself. Between my family, my work, my sister-in-law and my MIL's FT needs, just taking time to get a 10 minute shower seems like too much "ME" time. But I am finding a lot of support in reading all the posts and discussions here, but as much as we all say and know we need to take care of ourselves, find time for ourselves, and not lose ourselves; you wake up each morning and find yourself repeating the same self sacrificing duties you did the day before.
I lay awake at night so angry, so depressed, so dreading the next morning. Having to wake up and do it all over again. Having to try to please everyone, relieve everyone of their pain, their stress, their feelings of being overwhelmed that by the time I get to bed the next night I have only repeated the same exact things I said I wasn't going to do anymore the night before.
It is so easy to say get help, but your foot down and demand help from the other siblings (my husband as two brothers both within 15 mins of our house). And I have demanded, I have broken down and lost it. And they do respond and help for like a week, and then everything goes back to the way it was before. Almost seems easier to just keep the "Goundhog's Day" routine. At least then I know what to expect from life each day.
It can be a very lonely place sometimes. I feel bad reaching out to my friends with the same complaints, depression, and stressful thoughts over and over again, so I tend to just keep them bottled up. Which we all know is not healthy either but again is easier to just keep with the same old same old sometimes than to take on the greater effort of change.
Just knowing that there are others out there who are torn between the love and want to care for a loved one and the feelings of depression, loss of self, ungratefulness, anger and frustration are not unique to me.