I've been doing a lot of reading on this site and it is WONDERFUL. But from what I'm reading most of it is about caring for only one parent. How are you coping? What do you do when one is needing care at home and the other is ill in the hospital needing care as well?
I've been in that situation once already and it was not easy. It was a real wake up call for my three siblings though. Even though I've been telling them for the past couple of years that they need to be here more often and that I'd like some help here now and then.
Right now my Dad is relatively healthy again, but my Mom is in steady mental decline and her Narcissistic behavior is not easy to deal with, especially since I've been her target all my life.
Just curious.
How do I cope? The one thing that makes things do-able right now is that Dad still drives. He doesn't like it, and I think would give it up if he could. but for now, it's a life-saver for me. I work full time. I've taken FMLA so I can leave for important doctor appointments, but for routine tests, he drives them. When he was diagnosed, and we weren't sure what would happen, I spoke with the social worker at the hospital and started the applications for van ride service for them. We haven't needed it yet, but it's there if we do. I also made all the arrangments for home health care, even though we aren't using it yet, either. I feel better just knowing that the arrangements are made.
Mom lost 15 pounds before she was diagnosed, and Dad's gained 20 pounds since they got here. I have to push food for one, and try to keep the other on a diet. I keep the master appointment schedule so we don't book everything at once. I do it on Google calander so my sister can see, keep a print out with me always, and write each month on a big white board for them to look at. I have an expandable file folder for each of them, to keep all the paperwork straight. I'm lucky their hospital and doctors use a patient friendly computer system. I can see test results, and email minor questions or med refill requests.
My house wasn't designed for all these people. We moved the furnature so many times the first few months, I couldn't find my way around! Our Christmas tree was in the kitchen. When my sister came for the holidays with her family, I slept on a cot for two weeks.
I cope because I don't have a choice to not cope. I try to stay organized. What will happen when their health gets worse, I don't know. We've started talking about remodeling so we have a larger bathroom for them, and room for a hoyer lift because Dad is a big guy. We might put Mom in hospice when the time comes, I just don't know.
I answered partly because mom is narcissistic, too. I spent the first few months crying, wondering why she was so cruel after all I've done for her. She is awful to Dad. And while this is their home, it's not their house. Although you wouldn't know it from how she demands things.
When Mom was first diagnosed, she couldn't be left alone because of falling. Then Dad got sick. She was too weak to go to his appointments. I pretty much exhausted my neighbor's help watching her. Mom wouldn't have any relatives help. We're over that right now, but I know it will come again. This time, I'll have the home health service ready.
I think we deserve huge kudos for caring for 2. It's like being on two different roller coasters at the same time.
I make it a point to always go out first thing after I wake up and say good morning to her. This usually sets the tone for the day. If she picks and bitches, I take my dog out, then retire to my room and stay there. If my father is home, it is safer for me to stay out in the general area of the house he runs interference for me. I don't start anything, I'm just her target and she comes after me all the time. Since they don't cook anymore, I must go out even if he is not home and cook dinner. My mother is not safe around the stove. She's almost set the house on fire twice by throwing a dish towel or paper towel on a hot burner. She does not like the supervision, but I must stay close when she decides to try to make something using the stove. (I'm scared to death of fire because I lost my house to fire in 2003.)
My father loves to drive around. He is still quite capable (except for the C-Diff infection that he is still fighting) of doing what he wants. He does not like to go long distances, a 2 hour drive is too much for him. But I can see a general decline in his health and mental well being. My mother is a constant source of aggravation to him, and it is very draining for him to try to settle her every day. I mostly just make sure she is dressed fed and sitting in her chair watching TV or working on finding something to bitch about on the I-Pad. Then I go about seeing to house work, or designing jewelry that I make, and will sometime try to sell.
I have a Service Dog. My dog can sense problems and will act funny if any of us are in an aggressive mood. She will go after the aggressor in an altercation. She has bitten me more than once. And has gone after my Mom too. I mostly try to keep peace but sometimes it gets out of control. Princess is a distraction that will usually divert attention and stop the argument, at other times she stops it by biting. She is doing what she was trained to do, protect me and help keep me mentally balanced.
My Mom always wants control and tries to demand that what she wants done as soon as she says it. I am never so inclined to jump when she speaks and she does not like that I don't. She will try to take my dog away as a point of control, something that she knows will incite me to take action.
Here's a good one - she at times must stay at home alone with my dog. Princess is trained with an electronic collar. Now, I always take her out before I leave, and she does not need to be walked while I am gone. I make it a point to tell her NOT to take Princess out, but EVERY time when I come home, there she is with the dog, without her control box. Princess is extremely well trained, however she will chase a cat or squirrel because of her breed. She's a Jack Russell. I have become extremely upset with her because she will not do the ONE THING that I ask of her. If I would lose this dog, I don't know what I'll do. She is like another child to me. I believe that if this would happen it would be the end of our relationship, and I've stated as much to her. I would not leave her, but our relationship would be over. I will stay for my father, that's it. If he would happen to go to God first, I would leave and never return. My other three siblings don't want her, she is that hateful and bitter.
Mom is not ill enough to require constant nursing support but she does need someone here with her to make sure she does not do anything to hurt herself or others.
I suppose that when I leave to go somewhere I'll be taking the dog with me, I cannot chance losing her. She is a Service Dog and can go where I do, including into ERs, which I've done twice.
Well, that's the vent for today, sleep is required to deal with tomorrow.
Good Night All - Be Well - Sue
Dad had a stroke last year and is now bedridden. He could have walked but he has given up in life and prefers to just lie on bed and criticize, get mad, and try to order me around. From the beginning, I had no sympathy for him. He could have walked but he chose the bed. When he makes demands, I always remind him that mom comes first - in changing their pampers, in feeding, etc...
I have 7 sisters/brothers. When it was only mom needing help, no siblings helped. It was just me and dad. I stressed, i angered, I left speeding out of the house, I asked for help - they help - one time only. You can try asking for help from your siblings, but you will find yourself sounding like a broken record....repeatedly asking for help...and not getting it. I told my sibs that my health is going downhill fast and that my doctor says that I'm a high risk candidate for heart attack. Response: "Heart attack? Good, you can recover from a heart attack." "All you have is cholesterol? I have high blood pressure, high cholesterol, etc..." Yeah, but their health problems is not due to 24hrs of taking care of bedridden parents. They go to parties, eat at restaurants, travel...I can not.
When mom had to go to the hospital last month, (caregiver accidentally pulled out her stomach tube but caregiver insisted it just "fell out", yeah, right?!), I had to go with mom on the ambulance to the hospital. My oldest sister, who babysits parents from Mon-Friday while I'm at work, stayed and watch dad. But she's only for Mon-Fridays. If a medical situation occurs during the weekend, then I'm sure my brother will step in to watch whichever parent is at home. By the way, I was appointed by everyone to be the parents official caregiver since I'm single, no children and still living at home. Only living at home cuz I was helping dad with mom's care...
I hope your sisters will step up to the plate. May I make a suggestion made by my 1st therapy with a counselor? He asked me how many siblings I have. I have 7. He said that that's 1 person for each day of the week. If they can't do their day, then they can pay for someone to do it. He emphasize that I need some me-time for just myself.
I have no medical authority over either parents. And I absolutely refuse to have power of attorney. One day, when I get really fed up, I want to have the ability to get up and tell my brother with his wife and 3 grown children who by the way live right next door, that I quit and the parents are now HIS responsibility.
Does this help a little bit? Sure helped me getting it off my chest!! :)
My Dad also runs interference, but I've talked to him again and again about not doing that. He's getting better at it. I feel it makes me powerless when she's mad at me, but won't tell me, but I know because he told me why and he won't let me say anything to her. It's hard, but I'm slowly learning to deal with her and confront her when I have to.
I have a Jack Russell, too. And two German Shepards. They are all 12+ years old, and have bad days. It's more stress wondering when their end will come. And Mom likes the dogs, so she won't be happy when they die. I would start taking your dog with you. She sounds too valuable to leave with your Mom.
Until she got sick, Mom lived with my sis and did all the cooking and helped watch my nieces. Here, I don't want her cooking for us. She's too controlling, and my hubby doesn't like what she cooks anyway. It's too bland. I often include my Dad when I make dinner, but she doesn't eat with us often because she doesn't like what I cook, or she's too full from lunch, or whatever. She has never thanked me, not once in 8 months, for cooking for Dad. I worry when she can no longer cook for herself, because that will be more stress for me.
Bookworm - glad you got to vent. Having that many sibs and no help is terrible. My one sis lives too far away, but she listens well and is supportive.
May tomorrow be better for everyone.
I always make sure that she has taken her meds, eaten, is dressed, and is safe. I check on her constantly to make sure she is OK. I just kind of try to quietly go about doing what needs to be done, and if she becomes to combative, I go to my room. My brother recommended last week that I put a lock on the door, advice I believe I will take. I have a couple of horror stories involving her invading my room and trapping me. Something I do not wish to repeat.
Anyway, I'm in a position here where I can't say anything about anything. If I say something, she immediately is against it Nothing I do is right. I can't go anywhere right now because my son is using my car to go to work (temporary problem while we put a new motor in my truck). The truck is my son's graduation gift, but the motor blew and he must use my car. If i really need it, I can drive my son to work, but I have not yet So it is partly my fault that I am isolated here.
I want to join a congregation called "Saddle Up Ministries". That would give me an outlet. When I lived in AZ a bought a Mustang filly and trained her myself.Animals seem to be drawn to me and I am drawn to them. That makes Mom even more mad because she cannot call Princess away from me. She is doing what a Service Dog is supposed to do, stay with their master.
I don't know if you know what Fibromyalgia is, but there are days when my brain feels like it is working in a fog, and I'm having one of those days. Things just move a little slower, and at times, I won't remember what I did on those days. Also, due to the widespread pain from the Fibro, untreated scholosis, and several bback injuries I am dependent on Narcotics, and Xanax to help me sleep. I currently go to a pain management Doctor that does trigger point injections. I never walk out of his office with less than 14 or 15 injections on one side of my back. He does the other side the next month. They do help. That is why I'm on disability and able to be here for my parents.
I know she will never get better. And I dread what is coming, but I'll be here and my Dad and I will decide when and if she ever needs to enter skilled nursing, something I really don't ever want to happen.
I'll be thinking of you and everyone else here. This site is just wonderful for the soul. It actually gives me strength to keep it up and calmly continue doing what needs to be done.
Be well - Sue
Then she would "wander" away. We were constantly out on the road looking for her. One late night, she was missing. After hours of looking for her, she was finally found hiding underneath the car in the garage. After this, my dad put locks on all the doors. It worked.
The next stage was what we kids called The Violent Stage. She went from calm mom to scary mom. You can see the hate in her eyes. She literally attacked us. Those were the scariest times because you knew that if she catches you - she will really hurt you. One time, we ran behind the heavy sofa, and she flipped it over like nothing and tried to get us by going over the sofa. We all screamed and ran to the bedroom and locked ourselves in it. She violently attacked the door and us girls were screaming and leaning against the door because she was so strong and violent, the door shook. She made a mess of the livingroom. We were suppose to be her babysitters. Cowards is what we were. :)
Even before the "wandering" stages, she didn't want to shower, change or eat. We started out with those incontinence pads/underwear. Since she was still walking, we were able to lead her to the restroom to change it. She always prefers at this time, to pee or pooh when it's off. So, ends up making a mess on the bathroom floor. Even now, bedridden, when the pamper is off, and I'm cleaning her, she starts poohing a lot. Back then, my dad had control of mom. Because he was always controlling all of our lives, mom was used to obeying him. So, even though she resisted changing pampers,clothes, - she would obey dad. Then one day, she saw herself in the mirror. She got angry at her image. Very angry. We had to cover all mirrors because we didn't want to trigger her violent stage.
Finally, she couldn't get off the bed. One day she was walking, the next she was bedridden. She was still violent. One time she went to the hospital. Because she was violent, the staff gently tied her hands to the hospital bed's bar. When we saw this, we also started doing it at home. When those ties are off, she will attack you with her hands...and leave deep, bleeding scratch marks.
All this did Not happen at one time. For my mom, it took years of degression. Her bestfriend had Alz and she died within 10 years of diagnosis. Mom is a fighter. I sure hope your mom does not have the Violent Stage.
Well, off to get prescriptions and do a turn around Wal-Mart.
Later - Sue
I'm so sorry you had to go through so much with your mother and father. And that you are still dealing with it. I promised I wouldn't leave again, and I won't, because if I do, then the sibs will sell everything and put them in NH. So it's all up to me. AIN'T IT GRAND!!!
Be Well - More later if I'm awake. Sue
For a little over 3 years, I was in charge of everything from cleaning their home, all doc appointments, medications, meals, etc etc. My mom was diagnosed with a slow growing cancer with required surgery and a bowel resection. She had CHF and so many other problems. I don't know if she was a true narcissus, but she had no problem always making her needs known from coloring her hair and fixing it to so many other daily details beyond what I was doing.
From the time I was a child, being the oldest, I always felt there was some weird competition between us. She just seemed to be bothered by any needs I had or any desires I had as I grew older. Kind of like I wasn't supposed to have anything she didn't have. I learned eventually that the best way to win her was to do for her, but so much could be lost quickly if I expressed any thought that didn't back her up, even if that wasn't my intention, and I found she always showed an certain kind of anger if my dad showed any concern for me. I can only liken it to jealousy. I left home when I was 18 years old and never looked back.
Fast forward, I was the first to retire and my parents were in dire need of help, so we moved them up to live next to us. Slap forehead. My 3 sibs are out of state and can't help.
My mom died in Dec 2008. My dad continued on and suffered a major stroke in July of last year. He now lives with us and needs 24/7 care.
I was very organized when my parents moved here and I so appreciate notlikemom's comments about her calendar and all the things she does. I was retired so didn't have to fit in a full time job, but having a life went out the window.
The last year of my mom's life was difficult because she over did her pain medications and became a worse personality as a result. I think she might have been concerned about dementia, which just reinforced her need to be in control. It was a very difficult time. She eventually broke her hip in a fall. Things went down hill from there and she passed away.
It's been almost 7 years now. Still have my dad and am pretty house bound. My hear goes out to anyone who is trying to help parents and is mistreated in return.
Sue, it's been nice to hear more about your situation. Do you think your dad would consider placing your mom? Maybe the house is an issue for you. No shame in that, just wondering if there is a way to lessen the abuse you both suffer. Keep that sweet dog with you at all times and put the locks on the door. If she goes nuts, call 911 and have her taken in for a psychological evaluation. She needs one.
Cattails
Hi Sandra, it would be nice to be appreciated like how your mom was to you. It helps a lot when for them. And you know what? When she passed away, you still loved her. And that is something very precious that most of us won't have. Treasure it with all your heart!
Hi Ruby, you may need to check the phone book and first look under the government listing on the elderly (elderly abuse, elderly fundings) They might be able to refer you to other agencies. Actually, maybe you can visit first the local hospital or clinic and speak to the Patient Care department. They will know.
nursecarebear-You sound like you have become a strong person with what you've gone through. I hope to get there someday, too.
bookworm-AL is such a terrible disease. And scary for you. My Mom isn't violent, but her temper is awful. Verbally, she is very abusive. As the cancer grows, I'm not sure how she will become.
When dealing with a violent person, one thing to try to remember is to always (when you can) position yourself between them and the exit door. Think about how each room is laid out, and where you need to stand/sit in case you need to make an escape. Let them walk into any room first - never go before them and put them closer to the door than you are. I hope that helps.
Right now I am trying to work it out so my Dad can start going to the gym. He has gained alot of weight since coming here. And with his arthiritis, he wants to do exercises in a pool. But my Mom is very controlling of his time and their money. It's been two weeks since he and I talked about it, and he still hasn't asked her if he can join. I know he is afraid to talk to her about it. It's hard trying to do what's right for both parents when one parent doesn't really care about the other one. She resents the fact that he also got cancer and stole some of her thunder. She only seems to ask about his health because she expects him to be here to take care of her. I have no idea what her medicines cost, but she tells me all about his new meds and their prices. Like it's my fault because I take him to the doctor. I told him I will pay his gym membership, but that might cause more problems. I understand the jelousy thing - any time I spend with him makes her mad. Dad is at his desk alot, watching TV or reading while I sit at the computer. Sometimes when we talk, she comes in and glares at us. Just because we get along and I am nice to him. - Becky
It gets so frustrating when you have your oldest brother living next door with 2 grown boys and a grown daughter. They mow their lawn and our front yard (only so that they can park there) but will not mow around our house. So, I have to go buy 2 scythes and swing it left and right to cut the clinging vines and these huge scary looking, creepy taro plants that's trying to cover our house..Fortunately, several times the scythes stopped right on my legs. Haven't cut myself yet.
My younger sister took me out yesterday until 3pm (to change parents' pampers). My Niece of Next Door (a teacher) had to come and babysit. Because she was not happy spending her Saturday babysitting Grandma and Grandpa, she just sat there as I was going to change Grandma's pamper. She usually helps me when she sees me changing her pamper. But Noooo, because she has to babysit on a Saturday after payday, she just sat there. I was sooo angry.
I have to keep reminding myself that I will not let them make me slide back to being resentful and angry because they are not helping me. For my sanity and my health, I need to stop it since it only affects me...and my high cholesterol (from Stress, not from food.) Time to sleep. I hope you're all handling your stress better than me!
Feel free to sound off if your mother's driving you crazy. Unfortunately, the accusation will continue to get worse (and ridiculous.) My mom didn't really accuse me of things but she did with my 2 sister-in-laws. Like your mom mainly targeted you and bypassed your son and dad (?), my mom did the same. The more they denied, the more angry she got.
I'm glad you have other family members and your service dog to assist you when you're mom gets aggressive. Take care! Hugs from me!