My parent moved in with my husband, daughter and I 8 years ago because my mother's medical costs left them no choice. My mother passed 3 years ago after a long illness of COPD and emphysema during which time I was her main caretaker plus working full time. My father is 93, in good health and still is with us. My daughter is a senior in college and this arrangement has been going on through her entire high school years as well as all of her college years. I come home and have no privacy, no room to have my own life at all. Every decision is driven by the fact that my father is there and he doesn't like it when we go anywhere. If we do go to a movie or dinner we feel obligated to ask him along since he doesn't have anyone in his life but us. I guess I am just exhausted at this point and depressed. I find myself just not wanting to go home anymore. Both my husband and I have pretty high stress jobs so it's getting to both of us. I know there isn't anything that can change, I just need to vent somewhere because at this point every time I leave the house I am in tears. Eight years is a long time and the relationships with both my parents have never been great.
Each state has somewhat different Medicaid rules, but there may be an assisted living situation where he could be with peers, or else maybe you can get some in-home respite help.
Please check it out.
Carol
TO ONE CAREGIVER TO ANOTHER CAREGIVER,
YOU ARE ALREADY BURNED OUT AND YOU ARE RUNNING ON RESERVED ENERGY. I'VE BEEN TAKING CARE OF MY MOTHER WHO IS IN ADVANCED STAGE OF DEMENTIA AND SHE LIVES WITH US.
MAY I GIVE YOU SOME HELPFUL HINTS.
1. YOU SHOULD JOIN A SUPPORT GROUP.
2. TRY TO ALWAYS GET A GOOD NIGHT REST..VERY IMPORTANT, BECAUSE WHEN YOU HAVE A GOOD REST YOU CAN THINK BETTER.
3. WHEN YOU FEEL THINGS ARE GETTING OUT OF CONTROL. JUST TAKE SOME DEEP BREATHS GO FOR A SHORT WALK. DON'T GO HOME RIGHT AWAY TAKE 15 MINUTES FOR YOURSELF, GO TO THE PARK OR THE LIBRARY JUST DO SOMETHING FOR YOURSELF. WHEN YOUR MIND IS CLEAR & PEACEFUL YOUR STRESS LEVEL IS REDUCED AND YOU CAN DEAL WITH THINGS BETTER. THESE ARE SOME OF THINGS THAT I DO AND THEY WORK BELIEVE IT OR NOT.
AND NEVER EVER BE HARD ON YOURSELF!!!!!!!!!!
HANG IN THERE
PHYLLIS FROM NY
Please take care of yourself. I have been doing elder care for my father for 3+ years. It has taken a tole on both my physical and mental health. I believe the stress played a major role in my having had breast cancer, and everyday I feel like a nervous wreck. My father won't go to our nice senior center, he just wants to stay in the house where he constantly is either staring at me out the window if I try to do anything in the yard, or if I try to go anywhere, or he is asking the same questions over and over, "Where are you going? What are you doing? etc, etc, etc.". I have no privacy unless I hide out in my bedroom upstairs (we have told him the upstairs is off limits, but he still has gone up there on occasion), so now I don't feel like I have any privacy up there either. I feel like I am a twitching nervous mess, and that my father will out live me due to the stress he is causing me (he is 84, and I am about to be 53). You have done so much. It sounds like it is your turn to be cared for.
Mactavish, I identified with your feelings of no privacy. My father lives in an apt attached to our house so there is a door between us but he just comes over whenever the mood strikes him and we have to end whatever conversation we are having because he pays no attention to what we're doing, he just interrupts and starts talking. He is totally dependent on us because his friends are all either dead or sick and don't live near us and so we are it and it leaves me wrecked with guilt when I am at work or god forbid, go visit a friend for dinner or something.
I often wonder why he can't just say, it's OK, I will call you if I don't feel good, or to say, no, could you stay home tonight, I really don't want to be alone...I prefer honesty over the martyrish responses such as "ok, you have a good time" with a look of disgust on his face. He is 93 and I just turned 56, it's crazy that we can't have a more honest relationship but I just keep taking bubblebaths (he does not come in the bathroom) and praying for patience, love and understanding. I know the day will come that I will miss him, not the caretaking part but him as my father. Thanks again for everyone's responses.
I'VE BEEN TAKING CARE OF MY MOTHER WHO IS IN THE ADVANCE STAGES OF DEMENTIA FOR 10 YEARS NOW...IT IS DIFFICULT AT TIMES BUT THEIR IS ALWAYS THE NEXT DAY. AND I CONTROL THAT AND I BELONG TO A VERY NICE SUPPORT GROUP AND I HAVE A GREAT FRIENDS.
TAKE CARE AND I'M PRAYING FOR YOU
PHYLLIS ANNE, NY
Yes, I have definately gotten to that point, where when he asks me questions, I answer in very short statements like, "Don't know what I'm doing today", etc. The problem with that is he will come back in the house after I go upstairs, and question my kids (19 & 20) about not only what I'm doing, but what they are doing. They feel sorry for him, and usually tell him what I'm doing. I literally try to "sneak" out of the house but he always manages to hear me and come out front to see what I'm doing. The gate may be neccesary. We have talked to him about the danger of falling, and the fact that all that is upstairs is bedrooms, which are private. I've told him if he needs something to come in the house and call out. I can hear him fine. But he has still ignored what we have asked on a few occasions. We have always given him privacy. He has his own suite which is attached to our home. He has a very large bathroom, kitchenette, tv. and recliner, and large bed. He has a door out onto our patio, where he could take walks. But the only thing he does is constantly watch me. I have no idea how long this could go on. At this point, I know his health is better than mine. I think I am going to sit my kids down and try to make them understand about not answering his questions, that it is only enabling him to focus on us, and make excuses for not doing anything else.
tatayaya, Hi,
I totally understand. My father's "suite" is attached to our home. His interior door comes into our laundry area, then into our home. We have never just walked into his room. But he can walk into our home anytime he chooses. I finally asked him to not come in between the hours of 9 p.m. and 9 a.m., unless there was an emergency, so we could have time to get our chores or whatever done. He still doesn't get it. He will still come in, asking where someone went, cause he heard their car leave. I guess that's his idea of an "emergency". I use to have a close relationship with my father, but now all I feel is tired and annoyed. Thank goodness for those locks on bathroom doors, that is the one place he hasn't come in. Bubblebaths sound like a good idea.
phyllis55, Hi,
You are right, he does have dementia from his nervous breakdown. My prayers are with you that you have been doing this for ten years. And thank you for your prayers. I really don't know how much longer I will be able to do this. A support group does sound like a good idea. When I try to explain it to my kids, sometimes I feel like it just is not getting through, and that they can't understand how I can feel this way towards my father. We have all been so close over the years, but he is not the same person he was, and his care has effected my feelings towards him. Of course, that sends me off on another guilt trip.
***I have spoken to my two brothers that live out of state. I have told them that I need a break from this. There is also the fact that my daughter just got engaged, and will be getting married next year. She will then move out of state. I told my brothers that I want the time to spend with her and enjoy planning her wedding. I have told my brothers that I need my father to leave for a period of at least six months. Having him stay here and just getting another care giver will not do the trick. So, we are looking into possibly moving him down (about 45 minutes away) to his house, and finding someone that could provide some assisted living care for him there. The constant fear is that any change that he doesn't like may cause him to have another breakdown. I can't go through that again, and I know my brothers can't either. But, I've finally gotten to the point that I told them we have to do this no matter what. So, just keeping my fingers crossed that everything will work out. But, I have to admit, that when the time comes for him to move back in with us, it is going to be hard to have it go back to being how it is now.
I wish I could wave a magic wand and send all of you Ladies on a long deserved dream vacation.
We do have a really nice senior center in our area, but he's not interested. I do think it would do him alot of good, and help him to stop focusing on me. It may have to become something that we "push" him into doing, and see how it goes. Thank you for your suggestion.
Austin is right. Take care of yourself so that you will be there for your dad when he needs you. Let others take the burden who are trained to do so. It is OK. Give yourself permission to be human. We ALL have our limits. Remember, we are here for you.
I just love how you described your father, I never heard it put that way "calm cool alz patient" I hope God is blessing you with good life after taking care of your father. I've been taking care of my mother for 10 years now....she is so precious.
Have a great Thanksgiving!!
Phyllis Anne
NY
Carol
my dad was a calm cool alz patient he never gave me trouble but i have to say my dad has been like that pretty much all my life it took a lot to make him mad...and trust me my mom was a hell cat..i know . but my dad let her have her way quite bit just to save face...now there was time he did say no and meant it but when you have 12 children sometimes it can get to you but he was never a mean man and was quiet and thats the way he was and was funny too as a alz patient he made me laugh like he did when i was little but as a alz patient he knew something was wrong with him, he ask me several times and i explain it to him i told him that his memory has taking a toll but his humor was with him always..i miss him so much as well as my mom and these holidays are very sad to me, christmas was moms and thanksgiving was dads he love the togetherness of a family..but if he knew what was going on, boy he would be really sad if their not already
YOU SEEM LIKE A VERY LOVELY PERSON, AND I CAN TELL YOU YOU DID YOUR CARE GIVING WITH LOVE!! MY MOTHER ALSO KNEW THAT THEIR WAS SOMETHING WRONG WITH HER. SHE USE TO SAY WHAT IS WRONG WITH ME YOU DON'T GROW OLD THIS WAY. SHE WAS VERY SMART BEFORE ALZ AND SHE IS STILL SMART WITH ALZ IN HER OWN VERY SPECIAL WAY. I AM VERY THANKFUL TO GOD THAT SHE IS STILL WITH US AND LIVING WITH US. THANK YOU FOR LETTING ME SHARE AND REMEMBER "ANYONE WHO KEEPS THE ABILITY TO SEE BEAUTY NEVER GROWS OLD"!
PHYLLIS, NY
Just getting back to your earlier comment about wishing your dad could be more honest with you, rather than giving those snotty responses. That kind of response, sometimes described as "passive-aggressive", isn't necessarily tied to aging. It's just that the person cannot openly ask for something because it would leave him vulnerable to the disappointment of a negative response. Saying "Would you like to go to a movie with me?" takes more effort and risk than saying "There's a movie showing at 7 p.m. today and I've got two tickets--are you available?" In the first case, the speaker is introducing a genuine dialogue and giving the other person a lot of freedom to respond (and create a disappointment). In the second case, the speaker is just presenting a very limited option. It's tightly controlled because the speaker is either not confident about the relationship (or themself) or simply doesn't care about what the other person thinks. My sense is that your dad is pretty fearful.
First, I just wanted to wish everyone a blessed Holiday season. patrica61, I'm very sorry that you lost your Mom. She was very lucky to have a daughter like you. I miss my Mom everyday. She was my best friend.
I did have a question for everybody. For quite awhile now we have known that my father is not eating well. In fact it seems like the only thing he eats is ice cream cones (drumsticks). Lately though I've been wondering if he might be (gosh, I hate to say it) flushing food down the toliet to hide how much he really isn't eating. Anybody experience something like this?
FIRST I WANT TO WISH YOU ALL A MERRY CHRISTMAS AND HAPPY, HEALTHY & BLESSED NEW YEAR!
WE WENT THROUGH ENOUGH YEAR OF BEING CARE GIVERS FOR OUR LOVE ONCES. BE KIND AND GOOD TO YOUR SELF BECAUSE NO ONE KNOWS WHAT WE GOING THROUGH!! I'M READING THIS GREAT LITTLE DEVOTIONAL BOOK CALL "IF GOD IS MY STRENGTH, WHY AM I STILL TIRED? BY MAGGIE HILMER IT'S A GREAT LITTLE FIND. SERVING AS A CAREGIVER REQUIRES SPECIAL GIFTS, INCLUDING THE ABILITY TO CARE FOR THEMSELVES WHILE CARING FOR OTHERS. I WISH I COULD SEND IT TO YOU.
LOVE TO ALL
PHYLLIS ANNE, NY