The Caregiver & Dysfunctional Families: How are you doing?

Hi Austin,
How are you doing? Oh, I know this AC problem, as we were having this same issue w/mom. Yes, it was very hot many places these past few mos. The main caregiver at mom's was turning it up to 76, and mom was on the couch one day had cold body language, w/a flannel blanket on her. I turned it down, and advised the caregiver to keep it lower. I did this, as mom doesn't express what she's feeling.

In your case though, since you said you gave your mom the option to tell you about it, then she gets sick, well how unfair she's trying to dump it on you!
But it sounds from what you've written, further that this has been an ongoing unproductive way she chooses to communicate with you. I'm really sorry about that. Well it's good you're not going to put up with this treatment either.
Much Love, and hugs! Margeaux

Alexandra~So sorry you are in this situation. Did you lose your job because of taking care of your mom? It's a shame that family can always put in their two cents worth not refuse to be in the trenches helping. Hang in there and do the best you can which is what you are already doing!! Hugs!!!
Austin~You are right in not letting your mother tear you down. If you have to take care of her, keep up your boundaries and limits. My heart goes out to you, its a tough situation and harder still when you get no help or support from your siblings. Vent all you want, that is what we are here for and God knows I do my share of it too. Hugs to you!!!

Just got back from meeting with mom's attorney. It went as I expected. He can't help us...has to go by the legal documents my mom authorized some years back. He did say that she has declined considerably but by reading btwn the lines, he does not think she is legally incompetent which I already knew that. My hope was that he would try to talk to her about letting someone (if not sis or me) take over her finances. He did talk to mom about being more cooperating with us and told her if she fights us too hard, she will lose our support but at the same time he told us to not push her so hard to give up her control of things, he said the harder we push the more she will fight. He can't advise us when or if to call APS without violating his client (our mother). My sister got snippy with him which I don't fault her for that. Of course me being the emotional one...I lost control and cried the whole time...I hate when I do that!! He got a little forceful with sis and said you know, you can walk away anytime you want. I told him I don't want to take away her free will, but I am concerned for her safety and being taken advantage of by someone else. He said he can't advise us when to call APS and to call them regarding what they will do when the make a visit. He also explained this to my mom. He sympathizes with us because as he stated this is the hardest phase of Alz/dementia to go through and he said he would keep us in his prayers. I must admit that I am finding myself talking to God again after a falling out about 10-12 years ago. I also think I may need to get on an antidepressant, I don't like being weepy all the time. I have to get blood work done soon and I will talk with my doc when I go in for results.

On to funnier issues of sorts...while in Idaho, my daughter had her annual. Her doc ordered an ultrasound for a lump she felt during the example. My daughter went in the next day for the ultrasound and a mammy which showed nothing but the radiologist told her that doesn't mean there is no cancer and to follow up with her doc. My daughter is feisty, she said I know my body and I know I have lumpy boobs so why should I have to pay for procedures that are only going to result in nothing!! I told her just follow through on it Linz, it is better to be overly careful and give your hubby peace of mind. She sent me a text saying her doc wanted her to come so she could feel her up once more, LOL!!! Her doc said that both breast are the same and it is lumpy boobs, LOL!! I miss my daughters humor!!!

Spending a whole long week with my mother while we were away-I decided that her commets were toxic and let them roll off of me and she finally got on my last nerve and I shouted back at her and my sister bil and their friend said it was good that she did-I really do not plan on going out to take care of her when she gets out of the hospital-if there is no other way and I have to I just will have to tough it out but she will not talk to me as she has all my life-she already hates me so I do not see our relationship getting better and without a computer to vent to you guys I will be lost.

Austin – pneumonia is quite common with the elderly. I remember a time when mom kept getting it. With us, we keep the air con to 78. If it gets too cold, I move it up to 79. But 79 is too hot for mom. So, I keep it to 78 and father and I just cover up. Since your mom is still sharp, I guess she needs someone to blame – and your IT.

Alexandra – I don’t even know what to say to help you feel better. Who is angry that you lost your job? When you say family, who is family? As for you aunt and uncle…I have had my father’s sister (aunt) lecture me several times to do more to help my dad caregive bedridden mother. I mean, out of 8 kids, I’m the only one who stayed home my whole 46 year life to care for them! And she lectures ME to do more? How much more does she want? My siblings are married, had kids, and grandkids – and Travel!!! I don’t mind the not marrying, children and grandkids (already decided at age 19 to not want kids.) But I will tell you that for years (as in about 21 years) I’ve helped the parents without my siblings help (physically/monetary). Fortunately, I’ve always been blunt. When the siblings piss me off, I have no problem telling them off. But to lose a job in this economy!
Any possibility of finding a part-time job? Because it's very important that you have a balanced life - to maintain your sanity.

Lousy, my mother's nurse at the nursing facility told her she is terminal. Mom just does not want to hear this despite knowing she has inoperable, incurable stage 3B lung cancer. She is clinging onto hope, but it is false hope. She is downgrading. My family sees me trying to help.day after day. I lost my job, and they are angry at me over that. I have an aunt and uncle out of town that wants me to do everything for my mom. I have no compensation and everyone yells at me it's my fault for being in this situation.

I am highly depressed

My mom age 93 is in the hospital with pnuemonia and an infection-I just know she will blame me for getting sick because I had to have the AC on while in LA but I was careful to keep the temp at between 73 and 78 and the first day I did say to her if she was cold or too warm to tell me-and she did hear me and her mind is very sharp so I did know that she understood but the third day she yelled at me about using the ac and that she was freezing so I did turn it off at times but had to have it on some. My sister is asking my two brothers to work out a plan to have one of them stay with her when she gets home from the hospital -they never step up to assist with her-I will be very surprised if they do this time.

Hi Claudia. You are one of the rare caregivers here that was able to do what you did! You accepted the truth about your siblings and helping with the caregiving, not butting your head trying to get them to take some responsibility or share. I had to learn this the hard way just this past May/June. Except, I waited until I was suicidal. Sigh... I just wanted to say that I think you an example of how to be pro-active in our caregiving life! HUGS to you!!!

Claudia~It sounds like you are doing the right thing. It is a shame that so many family members are non responsive and just don't want to help. I have decided that I am not going to keep my brother up to date on our mother just because of what my sis and I have gone through this last week with mom. I sent him 3 emails to which he has not responded to. It is clear he is not interested...so be it. Hang in there and keep the boundaries up!! Hugs to you!!

Made some drastic moves to eliminate the daily chaos of my own dysfunctional family in a statement of self-preservation. First I changed my phone number to a private number...only the nursing home and those close to me have this. I no answer to family members who don't visit Mom but want to tell me what I should be doing for her. I attend weekly counciling to vent my fears and frustrations and just saying things to a non family person helps me with perspective. Hepa helps a lot as the only person the nursing home has to answer to is my Mom or myself so family can't interfere. Being point blank with family was also helpful "It's not your business" is a phrase I've had to master. I don't visit when other family members are there...avoiding arguments in front of Mom. And finally when the chaos begins I say firmly "You can take over Mom's care anytime you like, I'll arrange the paperwork for you" That shuts them up quick. I had to take these steps for my sanity. It would be nice to have a family that works toether in unison for Mom's best interests but I was not blessed with that and I've stopped reaching for it. I can't change them..only my own response to them. It's a work in progress 3 years now.

Sharynmarie,
How wonderful that your mom has this support system, of people from her church.
You know, mom's official diagnosis w/ALZ, was in 2007. But definitely she was becoming forgetful even when dad was alive, because he used to mention it, he passed in 2001. Anyway, I too last year went through the grieving. I remember it hit me one day, that mom wasn't who she was before. This is hard, because I remember feeling, well she's still here w/us for which I'm grateful, but when we see the changes in their personalities, this is hard! My heart goes out to you!! I've been doing some meditations, and this helps me. I do the burning of the sage, and it clears some of these feelings that are hard to deal with. One scent that has been a pick me up for me is citronella, or anything from the lemon family, even a lemon.
Anyway, treat yourself well, even if it's some chocolate, (which really is good for us). Glad to hear your sis and husband are good support systems for you, we sure need them.

I had to resort to some Aleve today, as I woke up w/terrible sinus pressure on account of these fluctuating temps here also. I'm down south from you-same state, how do you like that? Anyway, I'm going to go easy on what I eat today, because it aside from environmental, temp changes affects the sinuses. It may be time for me to do a light detox of sorts.
Yes, I'm always working on the boundaries w/my sister; this is a lesson for me, and I'm good w/that. The salad is getting more exciting.
O.K., have a great rest of the day, a great big hug! Much Love, & Light to you!
I'm grateful that I can let my hair down w/the wonderful people on this thread. Thank You, Gracias, Thank You! Margeaux

Sharyn, hope this week is easier! It's so tough to see the decline in those that are important in our lives... Glad mom's toe is getting better and hope you do something extra special for yourself this week so that you can feel strengthened and encouraged...

Margeaux~I understand what you are saying about your sister and how your hands are tied. You can only do so much and keeping a distance as you are doing makes good sense. Alzheimer's is a difficult disease, I read other threads and so many on here are going thru it.

It has been a rough week but I got thru it with support and encouragement on this site and my husband, and sister. Sis has calmed down too and mom is fine now that the phone is working again. Her toe is healing well, still taking the antibiotic. When I went over this morning, she was eating breakfast and was dressed for church. One of the ladies picked her up and I think that is great that she has their support too.

As for me, I am a little down today. I think I am grieving as I see mom losing another part of herself this last week. I can't change it, can't fix it so I am letting go. On a brighter note, I am making the salad with shrimp and nopales! We are heading back into the 80's this next week, one more big Hurrah of summer, then we will settle into autumn temps!! Enjoy the day and thank you for asking about my mom and sis!!! Hugs!! Sharyn

Sharynmarie,
Thank you for your suggestions. I offered these suggestions to her, but as always, she's going to do it her way, which I think is real crazy. There is an element with my sister's attitude, that these caregivers really need this job, blah di blah. It bugs me when she makes statements like this, because it already indicates to me, that she thinks of the people working there as lesser, peons. I know this from things my sister has said about the main caregiver, (not the one she let go), since she's been working there w/mom for about three and a half yrs. now. So of course we know her & even her daughter who used to work there part time, when her mother couldn't make it. In summary, my sister acts also, as Emjo said like an "elitist," especially when it comes to position, like the job one has, and especially money. Interesting thing is, I've mentioned that she works a 40 hr. job.
Current day, my sister does have extra money to spend, since she lives at mother's and doesn't pay rent. She owns property also, because of a couple of loans in the past that both mom, and even the narcissistic aunt made to her in the past. I know my sister paid them back, but my point is, "Slow down little sista, you didn't completely become some kind of a financial queen all on your own." You've done this, and continue to, w/the help of other people for you & yours and it's definitely not been because you've separated from the family and done this on your own. I know this was in some way some entanglement my sister had w/respect to our aunt and her involvement at the end of her life, even though they didn't get along. Financially speaking I'm no where near my sister,
but I didn't and wouldn't want to do it this way either! This too is all part of this POA, entanglement also, in our family.
Anyway, I really think that this demented idea, about money and position plays a big part as to why my sister also doesn't really value the caregivers in terms of respect. Many boundary issues w/sister!!

This daughter of hers too, I'm realizing behaves just like her mother.
I hope she doesn't start some trouble, especially w/the main caregiver. Mom is accustomed to her, and this caregiver for whatever her flaws are, we all have them is very affectionate w/mom. This becomes an issue also I believe w/ALZ,
is that they lose the ability to relate to just anyone.

How are your mom and sister doing? Well I hope things have calmed down a bit, as I know you've had a lot going on after your trip, and returning to work.

Ummmm! The Nopales salad, what a great idea! BTW, I remember your post about the acid reflux, the aloe juice is supposed to be great for this.
Enjoy! Much Love, Margeaux

Margeaux, thanks for asking. I'm doing ok. My wife is still on crutches with her bruised left knee bones. The cold weather has meant finding some creative ways for her to dress warmly with that brace on her left leg. We found that she can wear leggies under her brace to keep her legs warm while she wears short pants or she can wear thick men's warm up pants for they have more leg space than women's warm up pants. Tomorrow, we are going on a trip to the mountains for a week. It should be beautiful this time of year. My mother still thinks from time to time that she's going home and will be able to go to a yard sale, but that is not realistic. Take care. love and hugs to all.

Margeaux~Your sister may find herself in a position of not being able to keep caregivers if the daughter starts in too. A cot or even an air mattress bed from Wal-Mart would work just fine. I understand your position of not wanting to get too involved with your sister. I know first hand how impossible it is to talk logic with someone who has a personality disorder (mother). You know my story with that. I am so sorry you have to witness this with your sister and now your niece. I am off tomorrow, I think I will make Nopales Salad...yummy!!! Take care and I will be thinking about you!!

RZSmith,

You know, I realize that what you wrote possibly many people lived this way, in compromised space, and they knew how to manage well and all of that.
Yes, the cot idea is exactly what I was trying to encourage via the single bed idea. But w/my sister it always falls on deaf ears. Her way or the high way personality, quite frustrating to say the least! But w/her there are also some huge boundary issues too, I've written about here.

Now you've made me hungry. I like a lot of the food you've mentioned also.
Well try some Nopales,(cactus) aside from being delicious, very healthy because they are from the Aloe family! Thanks RZSmith, and have a wonderful weekend.
Much Love, Margeaux

Ladee,
You have exactly expressed my sentiments. Mom when retiring is really not a lot of work at all, she just falls asleep. This talk by sister that mom wanted someone there with her, maybe was true mos. ago when mom had just lost her sister (they were joined at the hip) and lived together. O.K., at that time I could have understood possibly mother feeling this way. But NO, I'm not going for this since my sister is too much about drama, and when there;'s none she creates it.
Also, this obviously is part of my sister's dysfunction.
No disrespect to my mom, but I don't even like sleeping w/her, so why should some caregiver feel good with that! What makes me laugh, is this talk about the caregiver being hovery. HAAH! Well what does one call this need to sleep in the same bed with their mother, I ask??
Thanks Ladee,, I'm sure you're a good caregiver. Much Love, Margeaux

lSharynmarie,
Exactly!! Back when my aunt was in the picture on many ocassions I'd mentioned even the two sisters having their own small beds. But anytime I try suggesting ANYTHING to my sister I can either tell by the look on her face, or the tone inn her voice, that she's thinking the, "Oh you don't know what I go through routine, I'm the one living here w/mother, etc." My sister has some big underlying resentment she projects on me, and I've already mentioned here in the past how this subject would never be brought up to my brothers.

There's also another layer to this going on also. Remember I've written about her obnoxious daughter (who lives there, 22 yr. old) who thinks she's a prima donna?
Well, my sister claims that her daughter had claimed she didn't like this particular caregiver because she hovers. Now they live in a 3 bd.rm. house, 2 bth rms., living room, kitchen and den. It's two stories. Mom is downstairs, and the den was converted into a bedroom when mom and my aunt could no longer climb the stairs. Somehow my sister was agreeing w/her daughter that this caregiver when there didn't know how to go hang out in another room if they've been there while she was on duty. I was wondering when sister tried summing it up in this way, well why in China are you all there also, if you need a caregiver on duty. Where would she like this caregiver to go while she's supposed to be on duty watching mom. I'm sure if the caregiver had gone into the kitchen, let's say my sister would be complaining that she wasn't doing her job. So this doesn't make any sense to me.

Last time I visited the other caregiver was there, and my sister complains a lot about her also. My niece was hanging out a lot downstairs as there's another dynamic going on to in terms of baby sitting. Her other daughter went back to work, and now her baby who is 8 mos. old; looks like he's being cared for both by this caregiver and the obnoxious niece. This niece is just like my sister-highly opinionated. My niece went to put the baby to sleep in a playpen-that is also in mom's room now. This room is next to the bathroom. Well the caregiver went to use the bathroom, and niece started to complain saying, "oh I hate it when she goes over there, she's going to wake up the baby." I thought, "oh boy," now we've this girl becoming my sister's daytime monitor of the caregiver.

I'm just hoping that my niece doesn't start to be like an instigator, because my sister has mentioned her daughter saying that she doesn't like all of these people there in the house all of the time, like it's inconveniencing her!! But many times I bite my tongue when I hear this kind of talk. It could be WWIIII, if I told the truth!! Let's see what develops too, since this baby is ready to walk. The positive side about my great nephews presence there, is that he make my mom happy. It's just the so called adults don't know how to handle situations.

I couldn't agree w/you more Sharynmarie also about the possiblity about mom
wetting the bed, and such. Even here though, my sister many times when I talk to her is clueless about ALZ. She has never told me say, "Oh I've read about it, what stage could she be in, nothing." Anyway, these are exactly the reasons as to why I personally am not even more involved.
O.K., Thank You Sharynmarie, I hope you and yours are well.
Much Love, Margeaux

You all were making me hungry thinking about all the food! I love all sorts of ethnic foods- rice, beans, and plantains; curry and basmati rice; dolma, humus tahini, tabouli, and falafels...but I've never tried some of the things that were mentioned!

I would think a lot of caregivers would be uncomfortable sharing a bed. If I were the caregiver, I think a little cot would be better- or the sofa. (But it did make me think of stories my mom would tell me about when she was little. I've seen the house she grew up in- only 2 bedrooms which barely fit 2 full size beds in each room. Her mom, dad, and the 8 kids had to share the space!)

Hope everybody has a good weekend!!!!

Cmagnum,
Thank you. Yes, I had wanted to write about this quite a long time ago. But guess I was focusing on other disfunction. My sister sometimes is off the charts IMO, when it comes to control. Also, I don't want to sound macabre, here, however the narcissist aunt died in that bedroom. I didn't sleep in that room for the first several mos. when I'd relieve my sister. Anyway, I guess that's another point. Thank you, Cmagnum, hope you're doing well. Much Love, Margeaux

Margeaux.... I have had many strange requests from families, but never to sleep in the same bed.... I would lay down with Ruth some nights to get her calmed down, but as soon as she was asleep, I went to my own bed.... sorry, as much as I love my job, I would NOT sleep with my charge.... hope you can convince your sis that this is taking advantage of the caregivers..... hugs to you..

Agreed....overboard and disrespectful to the caregivers. Maybe you could try to convince your sister to provide a bed for them just out of respect to them as being human beings. It's a shame because when/if your mother gets to where she is wetting/messing herself during the night, the caregivers are exposed to this. Being there and changing mom is one thing but having to sleep in those conditions is really unsanitary to the needs of the caregivers whose rights are really being violated. I hope you can talk sense to your sister.

Margeaux, I have never heard of anything that weird! It is way overboard!!!!!!!!!!!!!!!

There's some kind of strange control issue, I think going on with my sister at mom's.
While my narcissistic aunt was still alive, she & mom shared a bedroom.
Don't ask me how, nor why, but they both slept on a double sized bed.
They didn't always have this sleeping arrangement, but I guess once they both became less mobile they ended up with this sleeping arrangement in mom's house. Well, last year then as some of you know my aunt got very sick, went into Hospice, there at mom's home. During this time, through aunt's insurance a bed was installed in that room for my aunt-hospital bed. Mom continued to sleep on the double bed in the same room. But now, my sister-who's in charge & lives there, had a couple of the caregivers now stay in that room, and sleep in the same bed w/mom. This was done, since my aunt needed assistance during the night to the bathroom, also mom if needed. So then my aunt passes. Now the people who supplied the hospital bed, took that away.
Well, this sleeping arrangement has been in place like this now for 8 mos., after my aunt's passing.

At first when mother & her sister started this sleeping arrangement, and I knew about it, I'd tell my sister, "How can these two ladies sleep on a small double bed." My sister's answer used to always be, that, "Oh, once mom is asleep, she doesn't move around much." I still thought that bed was too small for the two sisters. Plus, my aunt used to have many nights of insomnia.

Well, my sister does have about three different caregivers that have been coming at night to do the shift. Two of them seem to have no problem w/this sleeping arrangement. Right after my aunt passed, I remember mentioning, or inquiring to my sister whether she'd planned on getting a single bed an putting it in that room. I've been there to relieve my sister every now and then, and honestly I couldn't sleep w/mom on that small bed, even if sister says she doesn't move around. So I'd end up on the living room couch, but hardly ever get any sleep if I choose to do so, since I'm always w/an ear out in case mom wakes during the night to use the bathroom.

So, finally about a month ago, my sister finally brought in a Queen sized bed into that room and got rid of the double bed. One of the caregivers was never comfortable w/this idea that she sleep w/mom, not when the other bed was there, nor now w/the Queen size. This caregiver was doing as I was doing, sleeping on the couch. So my sister this week informed me that she was not giving this one as many hours because she wasn't willing to sleep there w/mother. I don't know! I mean, I get it, I guess not every one maybe is comfortable w/this kind of an arrangement. Maybe if my sister had just placed a small bed in there so that the caregivers could sleep in the room but not in the same bed. Anyway, looks like my sister decided to let this caregiver go, on account of this. I'm wondering whether my sister did the wrong move, by starting this kind of an arrangement w/mom. Sister has told me, that mom wants someone sleeping with her, which I somewhat don't believe. But I'm not sure whether this is just more like this is what my sister wants. Have any of you heard of something weird like this? I think this is way overboard!!
I really think this is part and parcel of my sister's controlling ways, and her hair brain ideas re: the caregiving. Baffled, Margeaux

Sharynmarie,
These ladies were spoiling you! How cool. Even posole, now that's one recipe I've never personally made, only have eaten other people's. Oh yes, you definitely ate the Nopales in the salad. It can be sauteed with eggs, or as I said before made in a sauce or gravy. My dad used to make it in a tomato sauce with onions, garlic and spices. He'd mix it up with pork. That's a common combination, but it can be done with any choice of meat or chicken. I don't eat port myself, but I like it with shredded chicken or turkey.
The salad you describe sounds wonderful with the dried chilis sprinkled on it.
Ummmmm! Bon Appetite! Margeaux

Margeaux~I forgot to tell you that the ladies I worked with had me so spoiled because of all the homemade food they would bring to work...refried beans, salsa, Posole, you name it they made it in abundance for everyone. Yes, they even made Nopales Salad which we ate as tostadas. I make the Nopales Salad for me and my hubby sometimes, we love it! They also would bring in...not sure if you call it a salad or just a veggie snack...cucumber slices with lemon juice and dried chilis sprinkled all over. Very good and it's making my mouth water just thinking about it. Have a great day!!

I agree common sense vs. education. It's just an image my sis can put on. When she is herself, she is a great person to be around and I only notice her doing this around our mom. I like the word Joan used "Elitist"!!!

Snow already...wow. When we were in Idaho last week, a couple nights got down to 28. Here is Cali, we are having a few sprinkles the last couple days but it is still expected to be in the 70's this afternoon, a muggy 73.

Have good day everyone, and U5, good luck to you day!!

Sharynmarie,
Sorry, my thoughts got ahead of me. First sentence: I have a cousin who is higher...., etc. Margeaux

Sharynmarie,
I have a who is higher on the rung in terms of education, she's a principal I think of a middle school. She's a big snob, and very arrogant. So much said for education!!
Education vs. common sense or just compassion.
Glad to hear your mom's in good spirits.
Color is good! It picks up one's mood. I'll bet those silk flowers are beautiful.
Take care, and hang in there! Much Love, Margeaux

Hi Emjo,

It's snowing already?
Well yesterday some rain was predicted. I looked outside and there were these enormous black clouds, which were absolutely beautiful! It was time for me to do my walk and I do this combined with a grocery run. On the way back a man asked me whether I saw the rainbow, which was behind me. I saw pink clouds too.
By now I was only about a block from my place. Ran in for my camera and took a couple of shots of the rainbow. But it didn't rain last evening, although there was a slight shower yesterday morning.
I did enjoy the cactus. After I simmered it, sauteed w/garlic, chicken, fresh tomatoes, cilantro. That went into a warm corn tortilla, a taco.
The closest other vegetable that I can compare the taste of the cactus to is green beans. It can be combined with any type of meat, just like a vegetable. I must say, it is an acquired taste kind of vegetable, or takes on the flavors of other ingredients in the recipe, e.g., gravies, sauces, etc. If you have a store that has Latin products in Canada, you might be able to find pickled cactus in jars.
These can be used in the same manner. I was getting in touch with it again, because it's supposed to have many health benefits also, since it has aloe. It is supposed to be very good for arthritis, diabetes. Oh for some people who wrote about acid reflux, and digestive problems, great.
O.K., Emjo I'm going to dig up the chutney recipe I have, think it has apples.
Please anytime you want any Mexican food ideas, I have many.
I hope your turkey dinner with Gary turned out delicious, I'm sure it did!

That's a beautiful image of your ex mnl dancing; the pink cloud.
Great idea too, to get mom up to dance-exercise. Hopefully next time I'm visiting she'll be having an awake day. Last visit was all about sleeping.
Much love & hugs! Margeaux, I'm hungry now, wonder why, HAAH!