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nolansk Posted June 2012

How Many of You Out There Are Taking Care of BOTH Mom AND DAD

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.

bookworm Jun 2012
Hi Sue, You've been on my mind all day today. I hope you're doing okay.

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!

bookworm Jun 2012
Sue, I envy you on knowing how to do minor repairs around the house. My parents house needs constant repairs. Our Dear Brother of Next door can fix most of these repairs but...after constant request for help, I end up calling the professionals. Our shower faucet is running again. The last time it was repaired by the plumber, it cost as $60.00. I came home, checked the faucet and then asked oldest sis (babysitting parents) if plumber came. She said yes. I asked why is the water still running (not dripping but running.) She told him to change the washer. Sigh...So, he came, the householder told him what she wanted done and he did it. He had no shame that he just ripped off the 2 elderly people in hospital beds in the livingroom (diningroom). He could have said, "Ma'am, the washer is not the problem. Since you're already paying me for the 1st hour, I think this is the problem..." He didn't! So, I go ask -again - my Dear Brother of Next Door (whom I had asked and asked and asked even before we hired the plumber - to fix the faucet.) and in upset voice that the plumber ripped us off! Dear Brother sends younger son over - who can't even loosen the faucet. So, Dear Bro sends older son to fix it. Done! That was months ago. Well, the leak is back! And our water bill has tripled! So, tomorrow, we call another plumber. (Yes, I did text askg sis-in-law from next door if hubby can fix leak this weekend. No response. No Bro.)

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!

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notlikemom Jun 2012
Sue-sounds like you have an excellent dog. With your mother, you need her. Please get the lock for your door. Then you can carve a safe space for yourself in the house. It sounds like your Mom still sees you as a child, with it being her house, not as her caregiver. My heart goes out to you.
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

bookworm Jun 2012
Hi Sue - As I read about your mom, my heart started pounding fast. The Violent Stage is very, very scary. You're going to learn fast to trust your instincts when your mother reaches that stage. Mom was sneaky. She would walk calmly towards me and didn't show any anger until she got close. When I saw the hatred in her eyes, I ran! And she chased. Shiver. Yeah, go get a very good lock. Please don't buy those cheap ones! Trust me, when they get angry, they become Strong! I would also recommend a Plan B if she does get through the door. Or the window. And Plan C if she corners you in the diningroom, laundry room, kitchen, etc...

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.

anonymous95109 Jun 2012
Hi everyone: I just want to say how much I admire all of you and also how said it makes me to see how many of you are treated. We retired in June 2004 and relocated to Washington state. The next year me moved my parents up to live in a newly built house across the driveway from ours. My dad had suffered a stroke in 2002 and could no longer drive. My mom had multiple health problems, plus she had some physical limitations from birth.

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

RubyWilliams Jun 2012
I'm careing for my father who is elderly, and needs around the clock care. However, I also need to work but us unable to hold a job and give my father excellent care. I was wondering If the State of Illinois in cook county will pay me for doing something that I have no other choice and do not mind doing. But at the same time I need to pay bills.

sandradawn Jun 2012
My heart really goes out to all of you. I took care of my Mom for years, even after we had to admit her to a nursing home. I visited almost every day, washed her clothes, took her food because she didn't like the food there. I would sit with her while she ate dinner, then get her ready and put her to bed. On Sundays, while she was able, I would take her to church, but the last couple of years, she wasn't able to go so I would go after church and spend the afternoon with her.I have six brothers and sisters, but they all live away except one and we never saw him. Sometimes I was so tired I didn't know how much longer I could do it. I could never go out of town for more than a day, because she would get upset. But I never had the stress that you guys are dealing with. She always thanked me for everything I did and told me she didn't know what she would do without me. She passed away at 93 years old in January. I love her dearly and miss her so much. So, again, my heart goes out to you and your situation. The only thing I can suggest is that you check with Social Services in your area and see if there is any way you can get some help. Good luck and God bless you.

nolansk Jun 2012
Bookworm - Not physically violent yet. But I feel it coming. In one of my other posts here I told the story of her trapping me in my room with a bowl of my dad's vomit saying it was my fault that this was happening. I hollered for my son, and if it would not have been for him, she would have thrown that stuff in my face. My dog knows when she is bad and goes into protection mode. Princess is my emotional service dog, and sometimes what I cannot handle, she takes care of it for me. Mom came back into my room again last month bitching about something, and started toward me screaming all the way. Princess bit her to stop her from hurting me. I really don't approve of my dog biting my mom, but if she's gonna hurt me, then what am I to do? My brother told me to put a lock on the door. I believe I'm going to do that as soon as I have a couple of extra bucks. At least it will be some protection, and if she breaks it down, there's the proof that she's violent.

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

nolansk Jun 2012
notlikemom - no sleep last night and a bitchy Mom this AM. Took my son to work so I could have the car to run errands (get out of the house alone!!!) I'm so sick of hearing that this is her house that I could puke. Not only do I pay rent, and buy the food I want to eat for myself, I pay for materials AND make repairs to the house myself. I'm very handy around most anything except electrical panels. Other than that, if it's too heavy for me, then my son steps in and take care of things. With the exception of my car and insurance 90% of my income per month goes into this househould. I'm not in such a good mood today, and my feeling is that someday, somehow, I'm going to get that money back, I'm sick and tired of seeing people on here get paid to take care of their parent, and I'm doing the opposite.

Well, off to get prescriptions and do a turn around Wal-Mart.

Later - Sue

nursecarebear Jun 2012
I took care of my father who needed 24/7 care.for 4yrs Mind sharp, but physically very disabled amputee etc. mom needed slight assist then for herself. (dementia)Dad passed last year and now mom needs complete care. I begged for help , had tantrums, but they didnt want anyone strange in house. Siblings "too far or too busy" with own lifes, I thought I was going to crack down. I prayed alot and found new ways to be happy at home all day/night (i live w/them because of their needs) It took alot of soul searching. All I have to say is I am grateful to have been through it, i am stronger and i feel so much closer to my parents then i had ever felt.Dad gone & Now with moms memory going quickly i am appreciating "my hard work" as a fortunate gift. Be strong, reach out and find time for yourself even if its 10min and get some helpers if you can good luck

bookworm Jun 2012
Hi Sue, my mom has alzheimer. I can describe to you how it progressed with my mom. In the beginning, we didn't know it was Alz. It first began with accusations. She was always accusing us kids of stealing her money. She would hide it and then can't find it. It drove her crazy. And she never believed us when we said that we didn't take it. She truly believed that we stole it and were purposely trying to make her go crazy.

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.

notlikemom Jun 2012
Sue - thinking of you. I had a long day - work, Dad's doctor appointment, made dinner, laundry. Will write more later. We have alot of things in common. Try to get some rest tonight. I know I could use some, too! :)

nolansk Jun 2012
Hey NotlikeMom! Sounds like your Mom and mine could be twins. The interference that my Dad provides is to tell her to stop looking for things to bitch about, not just at me (although it is about me most of the time), but about anything she doesn't like in general. She is an absolute control freak. Always has to have the last word, which I used to care about, but don't anymore. Now when she starts I do what my Psychologist and brother tell me to do,I walk away.This causes another tirade about me "running away", I tell her to bitch at the walls or the TV and keep on walking. I wait a little while, then go back and try again. A bit ago I went out to take Princess out and had a brush in my hand to brush it out while Princess was doing her "thing". My hair is very long and it does shed hair that are at least two feet long, so when I can I brush it outside to keep it from getting tangled in the sweeper, but nothing will stop that, and I get bitched out about that too. She screams at me to cut my hair, something I will never do again. I have only cut my hair twice since I was 18, and have not cut it since my husband died in 2005.

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

notlikemom Jun 2012
Sue, my heart goes out to you! Your Mom sounds as difficult to live with as mine. I haven't been woken up to put away a salt shaker, though. That is awful. I told my husband today that I've been taking off the toliet paper when it's almost done, and putting it in a drawer for me to use later. That way she doesn't have an empty or need to change it herself.
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.

bookworm Jun 2012
I'm now taking care of both parents. I live with them at their own home. Mom has Alzheimer for years. I was age 23 when she started showing signs. Mom is now unresponsive, bedridden, on stomach tube for feeding, and trache tube for her oxygen machine. She's on the latter stages of Alz. She constantly needs suctioning of the phlegm from her trache or else she turns super red from choking cuz the phlegm is blocking her air waves.

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!! :)

nolansk Jun 2012
My mother has not driven for more than three years due to macular degeneration. We must drive her to every appointment she can think of. She is mentally acute enough to surf the web with the I-Pad my Dad bought her. Last week she said she was going deaf (another ruse for attention) so off to that Doctor. The test was normal for an 82 year old, I already knew that! She is able to do lots of things, she just refuses to do them. One night last month I forgot to put the salt shaker away after dinner. At 11:30 PM, after I went to sleep she barged into my room and forced me to go to the kitchen and put away the salt shaker. This is the kind of thing she does to me all the time.Today it was about flushing the toilet. She never changes the roll, she'll bring the empty (that she just finished off) and throw it at me and scream at me for not changing the roll for her.

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

notlikemom Jun 2012
luvpeople - Is your Mom safe to drive? That may be the first thing to consider. Is she living alone or with you? If you're going over there to cook and clean, for your own sake, it may be time to look at moving her.

luvpeople Jun 2012
I agree. I have been caring for both my parents for two years. my mom is still independent and she can still drive to church and her local dentist or to see my father in a nursing home. However, she does not fix her own meals. She does not want to work on household cleanup anymore.I am at my wit's end trying to keep up with my father who does not want to exercise anymore because he is so tired from needing to be changed day and night. I do keep a large notebook on him and I am looking for better tips to keep organized and also what to do with my mom because I do not feel that she is able to stay in the home alone.

notlikemom Jun 2012
Last October, my Mom was diagnosed with Stage 4 lung cancer with brain mets. In less than 2 weeks, we moved her and my father from living 800 miles away with my sister to living with my husband, young adult son, and myself. And our three dogs! Where they lived before was a 3 hour drive to the hospital, which is not realistic when you are having radiation treatments every day for weeks. And the chemo, and tests, ect. In December, my Dad was diagnosed with bladder cancer, stage 0. Thank goodness we caught it early. But he also was diagnosed with high blood pressure, sleep apnea, emphasema, and pre-diabetes. He thought he was healthly, because his previous doctor just kept telling him he was getting old.
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.

brandywine1949 Jun 2012
I am not taking care of both parents. But I take care of both my mother and my husband. Both are a real handful.

Carol72156 Jun 2012
I have both parents that I am providing care. If we didn't have private caregivers, I would not be able to take one to the ER while the other one stays at home. Neither one can be left alone safely. My siblings are not involved in the day to day caregiving. So I am more than grateful that there are individuals in the world that are willing to do private caregiving as their career. I don't know what I would do without our wonderful and very dedicated caregivers.

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