The Caregiver & Dysfunctional Families: How are you doing?

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The Caregiver & Dysfunctional Families: How are you doing?

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Any advice on how to handle if I should tell my 96 yr old mom with dementia that I have breast cancer?
What do you do when the caregiver is unable to help her husband due to surgery? Is there any kind of respite care offered for this time?
I’m trying to not follow the 24/7 365 day a year caregiving, but I don’t have much help. How do you all try to prevent burnout?

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M Margeaux Jul 2012 · Answer 1 · 2012-07-01T12:31:15.000-0400

Hi Sharynmarie,

I'm happy to hear that you are making the adjustment to you new job assignment.
These things take a bit of time. Good that your supervisor realizes the value of a worker who is consistent also. You'll do well there, and I'm sure you're a positive contribution to the team! Margeaux

M Margeaux Jul 2012 · Answer 2 · 2012-07-01T12:19:28.000-0400

Good Morning Cmagnum,

How are you doing? It sounds like you have had some stressful and frustrating days dealing with the NH, not to mention this doctor who had you and your mother waiting. My sister told me last year that when things were becoming very difficult for my aunt, health wise, (she too suffered from cardiac problems). But given many other ailments, and trouble walking, my sister thought it ridiculous her doctor's still having nurses call to try and set up appts. for a mammogram for her. Her doctor's were calling way too much, she had appointments constantly. If you're saying that the doctor at the nursing home is in touch w/what is going on w/her heart and you're comfortable with it, that should be sufficient.
I really think at times this is where family have to weigh in, on what is actually necessary, vs. making oneself and the patient totally stressed out. Take care, Love & Light! Margeaux

N notrydoyoda Jul 2012 · Answer 3 · 2012-07-01T10:31:10.000-0400

I'm waiting for the meds change to kick in. I have no idea how long it takes, but I assume two weeks and on Monday it will have been one week.

S sharynmarie Jul 2012 · Answer 4 · 2012-07-01T06:25:19.000-0400

Oh I understand better now. What an ordeal for you and your mother. I agree that making an elderly person wheelchair bound wait for an hour is outrageous. Sounds like no one was on top things that day. Atleast you and she will not have to go through that again. I hope you are doing better withnew meds I know it can take a little while to notice the difference. Take care!

N notrydoyoda Jul 2012 · Answer 5 · 2012-07-01T01:53:40.000-0400

sharynmarie, the nursing home where my mother is does offer the transportation service you mentioned. You call and they put your loved one on the transportation calendar. Thursday, it was good that I went early for the CNAs had forgotten than my mother's name had been on the calendar since Tuesday. The nursing home has a rather high turner over of people and thus these CNAs did not know that my mother needs foot supports with her wheelchair and they had a time finding the right root supports for that wheel chair. The van driver had been there even earlier than I was. My mother was not awake. Nor had she eaten any breakfast. It was a total mess! Then after all of that drama to have to wait in the doctor's office an hour before seeing him and all he did was ask various questions, listen to her heart and said see you in a year. I told him if that was all he was going to do for such a painful ordeal that my mother goes through in be in a wheel chair and have to wait so long that in my opinion the doctor connected with the nursing home who makes rounds weekly can keep up with the condition of her heart. He had no problem with that.

S sharynmarie Jul 2012 · Answer 6 · 2012-07-01T00:48:51.000-0400

cmag and selfish siblings~ When my father was in a nursing home, they had a van equipped for wheelchairs and would transport the patient to the dr. or dentist for us and we would meet them there. I just assumed all NH offered that service.

nj2bfree~Keep doing what you are doing for your MIL. You seem to have her best interest at heart where her daughter is after the inheritance. It seems there is always one or two family members who cause trouble because of their self centered desires. Welcome to our group and we look forward to hearing more from you. With you medical background you will be a great asset to the group!!

B burnedncaringst Jun 2012 · Answer 7 · 2012-06-30T19:34:07.000-0400

Sounds like my sister who is expecting her 5th baby but when it came to battle of wills I won but still won't talk to her on a civilized based attitude. She has lied and tried to do shit behind my back for years and years. Hell she told me she hope i died alone and in pain etc. she had abused and taken my kindness for a ride because I am done being treated like POS by own twin.

N norestforweary Jun 2012 · Answer 8 · 2012-06-30T08:31:12.000-0400

Oh the fun of dysfunctional families! My motherinlaw diagnosed with dementia of Alzheimers type and lives 3 hours away. I am a medical professional. 9 years ago, while the two families gathered @ my MIL home for holiday, I recognized my MIL was having memory problems. Just like our patients, I began speaking to her and explaining the importance of a living will. At that time one of the grandchildren had come into the room. At that point, I said could you excuse us, while I talk to grandma. At which point my sister inlaw came in and said she could hear whatever i had to say to her grandma. So I continued , at which point when I mentioned a living will, the sister in law went into a tirade saying you have no right to talk to my mother about her will....I explained I was talking to her about a living will... she escalated her tirade and said, "I want it all after mother dies". The next years have been filled with her tirades, selfishness, emotional and financial elder abuse. Fortunately, my husband has POA and was able to stop his sister was going through large amounts of her mother's money. It has turned out my sister in law has gone against doctor's plan of care.
At one point my MIL required readmission to hospital for a GI bleed subsequent to anticoagulation treatment post-op hip repair. Her daughter said we were torturing her and let her go home and let nature take its course. Then she said she just wanted to make sure there would be money left. The newest adventure was to arrive @ my MIL home to find my sister in law had removed our photographs from the frames we purchased and put her own in. Taking care of an Alzheimer's relative is hard enough without all the extra stress of a wacky sister in law. My husband and I continue to do what is right admidst a very difficult situation.

S SelfishSiblings Jun 2012 · Answer 9 · 2012-06-30T07:54:46.000-0400

cmagnum -- I hope ur new meds kick in and work for you. Thinking about you.

I have to do the same thing!! Take my Dad from the NH, put him in a wheelchair, get him in and out of my car, into the office etc....and to the cardiologist. It is difficult to say the least given my tiny frame!!! Then they say, "Oh, he's fine!" Great.....good to know. Have a good weekend everyone.

B bookworm Jun 2012 · Answer 10 · 2012-06-30T02:13:40.000-0400

Hi sharynmarie. I'm glad that you're finally getting the swing of things with your new duties. The stress of trying to keep up with your new duties and Not look like you're the wrong person for the job would stress anyone. Whew!! Now you can enjoy your weekend!

S sharynmarie Jun 2012 · Answer 11 · 2012-06-29T13:34:00.000-0400

Hello everyone!! Yes this week has gone better, adjusting to their routine which makes it easier to work faster. I much prefer the knowledge and feeling that I am contributing. Thank you all for the support and wishing everyone a great weekend♥!!

N notrydoyoda Jun 2012 · Answer 12 · 2012-06-29T04:39:28.000-0400

My psychiatrist has increased my dosage of abilify which evidently enhances the effectiveness of my anti-depressant welbutrin. I don't know how long it will take for this change to kick it, but it will be a welcomed one.

Yesterday, my mum's nursing home totally failed to have her ready for her cardiology appointment and I was so glad that I got there early. They had her appointment down on the calendar for days, but forgot it. Man did I fuss them out. We were able to get her to the doctor on time. We had to wait basically an hour to see the cardiologist who asked several questions, listened to her heart and breathing and said see you in a year. I told him that being placed in a wheel chair and waiting so long was such an ordeal for my mother that I questioned if coming back in a year was needed when she does have a primary physician at the nursing home. He had no problem with that since it has been two years since her heart attack without any further problems. I think it is insane to make someone from a nursing home in a wheel chair have to wait 1 past their appointment time to see the doctor. I'm going back to bed.

B brandywine1949 Jun 2012 · Answer 13 · 2012-06-28T22:52:40.000-0400

I am just ready for the rubber room and then some. Sister and I have been cleaning out moms house b/c mom went in the NH. Now sister says I took too much and that I was not to :remove" a single thing from the house at all. So I loaded up my car 4 X and brought most of the stuff back to mom's house. Which means sister gets 95% of the stuff and I get 5%. I got the leftovers and the junk, like old aftershave from my step father. Oh well... Jesus still loves me.

L lildeb Jun 2012 · Answer 14 · 2012-06-28T19:07:49.000-0400

Sharynmarie, glad to hear that you r making improvement at your job speed. It always take time for someone to feel a little comfortable at a new enviornmental area even if it is still the company. Hang in there n don't be so hard on yourself.

M Margeaux Jun 2012 · Answer 15 · 2012-06-28T12:11:47.000-0400

Good Morning Emjo,

I'm catching up, also I hadn't been at all on computer if you can believe for about 4 days. Well, first of all I want to tell you that I just love your new picture, you look very pretty.

I was reading about what you said re: "we all having coping skills."
A big YES, to that, my dear, we do have them. I invite you again, and everyone, to remember the detachment, and exercising the emotional muscles. Lets think of Popeye! HAAH! Oh, I've had to exercise mine plenty! The thing is one has to keep reminding oneself to do this, because if we don't we can get out of emotional shape! Love & Hugs! Margeaux

M Margeaux Jun 2012 · Answer 16 · 2012-06-28T11:53:13.000-0400

Hi Everybody,
I'm not completely awake yet.
My second paragraph should have ended after word "pronounced." Sorry about that, going for another cup of Joe, Margeaux

M Margeaux Jun 2012 · Answer 17 · 2012-06-28T11:48:00.000-0400

Hi Advocate,

Oh! I hadn't read your latest post about your dad's health.
I was responding a few pages ago.

I remember when my dad was very ill, with cancer, things were very intense, and unfortunately as many of us have or are experiencing is when old behaviors seem to come up again, or get more pronounced.to go outside to talk.

Well, it is good that you have some supportive people in your life. It sounds as if you are doing way more than other people in your family do at a very organic level.
Many of us here know this story all too well. There's either one in the family that is possibly looked upon as the go to person, or others know we can be counted upon for help. But this by no means should be permission to be disrespected. We've got your back. Sometimes, there's no being nice to some people, too! Hugs!! Lots of love, Margeaux

M Margeaux Jun 2012 · Answer 18 · 2012-06-28T11:21:40.000-0400

Hi Advocate,
I'm glad that proud peasant made you smile! If I can make anyone smile-laugh, it makes my day. What you wrote about the way your mother reacts to finding out that your father has made a request of you is quite interesting. Specifically as to how you have described her, as going into a rage, well that is quite the acting out kind of behavior isn't it? My mom, well at least in the old days, because as I said before ALZ, I'm sure the meds have made her very mellow. But when mother still had that strong will showing did it in a very passive aggressive manner. This would absolutely drive me nuts! My dad also, while he was such a great guy, he unfortunately didn't have some good boundaries set up. So in many situations our mother ran the show. Do you think, Advocate that possibly your mother may have had/has some jealousy issues with you regarding your dad? My sister and me definitely have discovered especially as we became older that this was so w/our mother. Mother had this very sneaky behavior.

Well, it is good for you, that you have managed with the help of therapy to figure this out. It's amazing what work on ourselves we constantly must be mindful to do, each in our own ways so that we can be emotionally d! etached from these types of people around us. Proud Peasant. Love & Light! Margeaux

S Survived2 Jun 2012 · Answer 19 · 2012-06-27T21:54:51.000-0400

Advocate, I was raised by an abusive mother, and also had 2 sisters. All 3 ended up with addictions. I won't tell the whole story here as I have a thread on the subject and my wonderful friends here at ac have stood beside me, and are still doing so. I'm 50 years old, and at a young age I made the decision to walk away from them all. It was a life saving decision for me. I have never once in all these years regretted that decision. I wanted a life filled with love, a family. And I so badly wanted to be loved. I have that life I prayed for. That's not to say there hasn't been baggage that popped up along the way. The phone calls came. The 2 sisters died. One suicide, the other drug addictions. Mom is 78 and still the same abusive person she's always been. Never feel quilty for wanting peace in your life. How does your husband feel about your moms and your sibs treatment toward you? Sit down together and talk. I mean really talk. How do the 2 of you want to live the rest of your lives? How do you see your life in 20 years and how will keeping them in your life affect your dreams and goals. If keeping them in your life puts any or all you dream for at risk? Then I think you'll have an answer that you can be at peace with. Those are just my thoughts. I've lived the nitemare and you have touched my heart. Much love to you, lisa

A anonymous95109 Jun 2012 · Answer 20 · 2012-06-27T21:16:20.000-0400

Advocate: Where is your mother living? Are she and your dad divorced or has she moved in with your sister(s) since Dad went to a nursing home. (Got that from your profile.)

From the sounds of it, you are on your own, doing your best to move on with your education and keep tabs on your dad who is in a nursing home. What are the family complaints? Are you not advocating for the best care for your dad? Are they frustrated that you can't give them daily updates since you have other responsibilities as they also have.

Is there some reason why your father can not be moved to a facility closer to your mom, where she could personally see him more often.

My heart goes out to you. You are clearly doing your best. If you have a moment to respond to my questions, I think we would all welcome your comments and information.

Sending you lots of love and hugs, Cattails.

1 195Austin Jun 2012 · Answer 21 · 2012-06-27T14:54:51.000-0400

Advocate -I understand what you are saying-when you decide that a mother is not going to change and you will never have a good relationship with her it is time to stop trying I have had to do that and spend very little time with you and do not call her very much-you are doing the right thing no one deserves to be treated badly-I thought I did for years from my late husband but finally before he died which I did not expect I was sure I would die first but I had stopped taking his nonsense -our last conversation by phone-he was in rehad soon to be in the NH permnatly and in the last call he was planning to give me orders even though he knew I was doing medicaide work and I let him know I was doing things that needed to be done not his silly request and the next day he became very ill and died less than 3 days later-but at least I broke the grip of power he had on me for many years.

J jw Jun 2012 · Answer 22 · 2012-06-27T12:51:18.000-0400

Advocate, you sound like a very kind, considerate and well adjusted young woman. I'm sorry that your family is treating you as they are. I understand. The blessing in this is that it sounds as if your father appreciates your desire to care for him. I hope that's the case. Because in the end, that's all that really matters. The other members of your family will have to answer not only to their own consciences, but to God for their attitudes, their words and their actions when it's all said and done. We all will.

I'm glad you have a supportive counselor you can count on, and also the support of your husband. And I'm glad you're able to get out and have a nice time with your friend, and that your boss is supportive.Those are tremendous blessings in the midst of a situation like this.

I'm caring full time for my mother, living in her home, and trying my best to keep her safe and well, and she treats me with disdain and contempt. There's no pain like the rejection one receives from family members, especially one's own mother. I do hope your mother and siblings will come around before it's too late.

I truly wish you all the best.

You are very fortunate indeed. And something tells me that everything is going to work out fine for you.

While it would be ideal to keep open lines of communication with your family, if you can, I realize that is not always possible. But at least you have tried.

T TheAdvocate Jun 2012 · Answer 23 · 2012-06-27T11:47:17.000-0400

I really appreciate this blog. So many helpful comments that I won't address anyone in particular because all of your contributions are much appreciated. I've been dealing with some serious family matters, I was just finishing a semester of school and working in a student aide job and have been overwhelmed. Fortunately, I have a very understanding supervisor that lost her dad a few years ago and she totally understands my predicament (being the only family member within driving distance of my parents). I've just learned that she was able to find a replacement for me so that I could step down about a month early in order to spend more quality time with my very ill father right now. I don't know what to do about my mother or my sisters. All 3 of them (I have two sisters) have been very unkind, less than understanding of me in my situation and expecting more from me than is humanly possible. While they live out of the area and have full time jobs and businesses, I also have a full -time job as a college student right now. They don't seem to understand that I can't just quit everything right now. I think I'm going to make an appointment with a trusted counselor that helped my husband and I through some very rough times in the past year. I'm in need of professional advice or at least a very unbiased opinion regarding whether or not I should have any further contact with my mom and sisters. I've shut down all communications with them and feel guilty about it with my mom. I'm so sad sometimes that I feel depressed but I don't want to be unhappy. This is a part of life, dealing with a loved one that is in their final months or years. I know that. I just can't take any more of their verbal abuse (sisters and mother). I've already had words (email) with my one brother and know where he stands. At least he isn't one to pop off with whatever comes to mind and call or text me with such insulting and abusive remarks. My father should have the best care available to him and if my mother isn't going to listen to me then I just don't know what reason there exists for me to be in her life any longer. I appreciate the hugs and support here very much. It is nice to have a group that understands some of the things that I'm writing about. A dysfunctional family is truly sometimes a real difficult situation to deal with and I believe sometimes there is a time to draw the line and not let them cross it again. Hope all is well and that everyone is finding something enjoyable in this day. I am looking forward to meeting with a dear friend in a few hours for coffee. It will be nice to just sit and talk with someone that is very kind and loving after dealing with relatives that act like they hate me.

B burnedncaringst Jun 2012 · Answer 24 · 2012-06-26T19:45:26.000-0400

speaking of dysfunction..i am broke lol so that is good news not and have to check the bank online ...part of the dysfunction is my husband bitches about smoking and well when i got smokes it broke us and now he is upset he is that were broke until we get his check and i get paid again. so keep praying that i get this other job. so broke wont be issue lol. and he smokes more than i ...trying to get him to do right for his health is like arguing with a bull.

G golden23 Jun 2012 · Answer 25 · 2012-06-26T08:24:13.000-0400

teacher - good for you - you didn't make it, or break it, and you can't fix it -disengaging/emotional distancing is necessary for those of us dealing with narcissists, in order to keep out own health and equilibrium. I am proud of you!
sharyn - so glad the last couple of days were better. You are a very conscientious employee. I hope they appreciate you! Some adjusting is usually needed in a new situation.
hope everyone is having a decent summer, and doing things that are good for them, as well as caregiving

S sharynmarie Jun 2012 · Answer 26 · 2012-06-26T04:57:43.000-0400

The last two days at work have been an improvement as I have been able to get out on time. Hopefully I will continue to become faster and be able to finish everything I am expected to get done. The last two days I have only had one thing I could not finish. Thank you for the prayers and positive thoughts!!♥

T teacher314 Jun 2012 · Answer 27 · 2012-06-25T22:55:14.000-0400

Since joining your blog and reading your comments, I have found a renewed strength in dealing with my parents. Today when they were acting out and fighting with one another, I was able to disengage from the craziness and not feel drawn into it. I am not responsible for their dysfunctional relationship and I cannot try to "fix" it, as I have tried in the past because I was the "dutiful daughter". Thank you to you all for sharing your stories and your feelings.

G golden23 Jun 2012 · Answer 28 · 2012-06-25T22:21:02.000-0400

(((((((bw)))))) sounds like you are totally exhausted. I wish there was some way you could get more time off for yourself. God knows your heart, so you did not need to finish your prayers. He also knows that you need the sleep.
austin - nice observation -
sharyn - wondering how work went today - let us know
(((((hugs))))) to all

B bookworm Jun 2012 · Answer 29 · 2012-06-25T21:07:40.000-0400

My good intentions to pray to God for forgiveness and for my sisters in Colorado Springs ..I did address God, then on my very first sentence, I fell asleep! For all you caregivers who are extremely tired/exhausted, have you ever experimented on how tired you are? I've done it several times late in the evening. While changing mom's pampers, I stop, close my eyes, and I can feel my body shutting down and tilting. I open my eyes quickly, and I'm tilting! So, I've learned the importance not to close my eyes too long if I don't want to be knocked out! ..

1 195Austin Jun 2012 · Answer 30 · 2012-06-25T09:16:23.000-0400

I have been reading the posts but have not cometing much but you all are in my thoughts -you are an amazing group of friends.

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