The Caregiver & Dysfunctional Families: How are you doing?

ouch, sm, no fair!!!!

Glad~ So sorry about ex mil. I do hope you can see her, she sounds like a great person and one who supported you emotionally.

Loo, Sandwich~glad you had some laughs to relieve the stress...

It has been a day of disappointments. I put in my vacation request only to be told they can't approve it unless they can get someone to cover me....AND...all the other stores are short on employees!! Not only does this company transfer me to another city knowing I am responsible for my mother's care...now they want to deny me my vacation to help out my daughter who is having twins in another state with no other family around to help her!!! Great....just GREAT!!!

Nope, no alert thingy. Thank Emjo, nighty night. Very late for me tonight!

sounds like a real fighter.

you do wonder why no one checked. I gather she didn't have one of those alert thingies

She is such a strong woman! Fell and broke a hip 10 years ago, had double mastectomy 5 years ago, couldn't walk because of too much calcium two years ago, yet walked again and returned to independent living. When I met her she was probably 4 foot 8, and that is generous, but weighed 175 pounds, the same I weighed with my last pregnancy and I am 5 foot 9. She is now 93 and it is amazing she has lasted this long, and survived that 18 hours on the floor. Though I have this nagging, why hadn't someone checked on her?!

((((((hugs))))) glad - am sorry about your mil. That has happened so fast. It must be quite a shock. Hope you get to see her. Sis's timing is awful. Let us know how it goes.

Rough couple of days here. Ex MIL, a very sweet woman, did all she could to help me with my kids so I could get my BA at the ripe old age of 35, lived in independent living. She had a stroke and a heart attack on Saturday afternoon from what she can tell them, they did not find her for about 18 hours. She has now been put on hospice and they are saying 3 to 10 days. Her aeorta has somewhat collapsed and she is having a hard time breathing. I am trying to get down to see her tomorrow but cannot get dysfunctional family members to respond to a request for help tomorrow. No surprise there, and I would do anything I could to help them in a similar situation. :=&&*:!! Will call care agency in the morning if ex will let me see her. I think he will.

And wouldn't you know it, first thing this morning dys counselor sis sends an email about HER July birthday party that she wants to celebrate with my kids. Though she did not know about MIL yet, just terrible timing. Course I don't think she ever has good timing.

I want to go tomorrow since I have to take L to urologist on Wednesday for his second hormone injection. Just very cruddy day!

Loud angry old women should be used as a national defense weapon. LOVE IT!!!

Hang in loo - you are getting there. Last year was like that for me -better now with mother in hospital - not great, but better and more manageable.

Hi ziggy - glad a couple of your sibs are helping you. Good for you re keeping records and letting the have it.

Iwent - vent away. It won't get easier. Hope you get some breaks.

hi everyone - crawling out of the "too tired to do anything" hole. Actually cleaned a couple of bathrooms and grocery shopped yesterday. Got some things sorted with the insurance adjuster today, so we should be able to move ahead shortly. Yay!!! Tomorrow I tackle the social worker and then get my nails done. Wed. another dental appointment, and need to get to the dr. for new prescriptions. In between, I tend to nap but that's OK.

Have a good one and do something good for you.

Sandwich, you GO GIRL! Hee hee. I may quote you word for word on Saturday, when we go down to get her car. I hope, I pray, that SOON she goes into AL. I really don't think I can handle crisis after crisis after crisis. All I do is put out one fire after another, and it's been this way for the past year and a half.
What does she do to reject help? You name it. Anything from putting me (or others) off by saying, "I'll have to think about that." Translation--"not gonna happen." I've become a master at sneaking around her to get information and put some arrangements in place.
She will lie, make up stories (that unravel because her memory is so bad), bad mouth me to her neighbors, and so on. I've managed to maintain a fairly functional relationship with them, but still need to do a lot of explaining and air-clearing, and it's exhausting and infuriating.
And then, as things ramp up, she will REFUSE to let whoever is there to help, actually HELP. She will hover, micro-manage, claim she doesn't need/want the help, and then eventually alienate the person. I've walked a very tough line, trying to do what I can and not get shut out. But I have been shut out a bit, and anticipate more of it to come.
I don't doubt that with her, it could get to the point where she would need to be physically removed. I'll need my husband to distract her so that i can get her car keys, for instance. I think it was Pamsregman who suggested that a neighbor disconnect her garage door, and she would stand in his way to prevent it.
So, it's tough. She's her own worst enemy.

sandwich, hehe I have this mental image of some terrorists accidentally taking over a nursing home and being bludgeoned to death with walkers....

Looloo, when you say mom won't let anyone help, what does she do?

Mine would be verbally abusive, yell, and use loud anger to try to control the situation and people. Loud angry old women should be used as a national defense weapon.

There will always be something. Car, cooking, cleaning, hygiene, not being able to live alone, not being able to be at home, not having any control anymore over anything really.

I don't know when my mom drove last, but I'm sure it was mid October 2013. She did not care one whit if she killed somebody in an accident. I lost it once and told her that if she killed somebody because she's so stubborn too stupid to quit driving, that I would NOT bail her out of jail and I would NOT pay for a court attorney, and I would NOT visit her in prison. That shut her up for a couple weeks.

By then, we had gotten there to do the move, and she never got behind the wheel of a car again. The good people of Stanly County NC will never know what I saved them from. Of course, there was a month or so of rage about me not letting her drive my car. I told her she wasn't covered on my insurance and hers had been cancelled.

Haha, I should do that!
I was a chump to believe that she understood the situation and the consequences. She said all the right things to me, after several conversations where I thought it finally clicked for her. I thought she would know not to drive and that, in a few weeks, I'd donate the car. But she probably doesn't understand, and doesn't care. She's outraged and feels like she's the victim.
I wonder what will come next, once we're finally done with "car-gate"? (Watergate, get it? Lol...)

Have a pallet of garden stones delivered, about a ton, and make sure they off load it in front of the garage door. LOL

My MIL is just as obstinate, but she loaned her car to #1 son because his was in the shop. We just never brought it back. Sure she was mad, but she was an extreme risk to other people on the road. Do what you have to. Hmmm have

That's a good idea too, Pam. It's just that my mother will not let ANYONE do anything. At this point, she has no comprehension whatsoever, and she's the most controlling, obstinate person you can imagine. Someone would have to physically move her out of the way, and no one would do that. On Saturday, my husband and I will need to rehearse how to distract her so that one of us can get her keys, because she will NOT hand them over.

Ask someone to disable the garage door, make it so it will not open. If it is an automatic door, they can pull the safety release on the chain drive. That should keep her grounded until you get there.
A flat tire may not stop her, if she doesn't notice it, she will drive anyway.

Glad, that is an excellent idea, and I'd do it in a heartbeat. But it's in her garage, locked up.

Loo, ask the neighbor to go out an flatten a tire over night. That should keep her out of trouble for a day or two.

I was using all my self control not to shriek at this neighbor, "I'm doing the BEST I CAN!" Very day, it's a different crisis. I live 3 or more hours away, depending on traffic. My mother's cognition seems to be next to zilch at this point, although she seems all right w/self care for now. She doesn't trust me or like me, and she tells people I "never call" and that I "hang up" on her if she calls (the neighbor just told me that). I was almost in tears, wondering how much longer, how MUCH LONGER, before she FINALLY goes into AL, or memory care, or a nursing home?? I will lose my mind if this continues for another year.

Trying to cool down and get my bearings. My mother's neighbor called, and told me I HAD to get rid of her car because she is continuing to drive it. I hoped she wouldn't but she is. She desperately needs to be in AL, or have a full time caregiver just to keep her out of trouble. But she refuses.
I can NOT get there until Saturday. So, this will wait until then. It will have to.
My husband will help me, and I really appreciate that. It's gonna get ugly. On the bright side, she will probably be so angry that I won't need to do the whole Happy Birthday thing for her in a few weeks. Ha. Ha.

I am one of 9 and sort of in the middle. I take care of my mom's rentals and her finances. It is hard sometimes as none of the others help me on the rentals. I have collected the rents and passed it into my moms account for 14 years and never asked for one penny. Now that they see mom is getting on in years (86)the oldest sister is demanding me to give up the power of attorney to her. She told the other siblings that I was moving my mom in with me so I could take everything. I feel frusterated and finally made a spreadsheet of all the things I do for my mom and what it has cost me to maintain her rentals and will send it out this month and each month letting them see where the money goes and what will be required to be paid back if there is anything left in the estate to me for the cost of maintaining the rentals. I am not going to loose money for other siblings to gain off my hard work to take care of my mom. Two of my sisters have finally stepped up and are now helping me with my mom's doctor visits etc. No one can help me on the rentals as they are in Tennessee where I have to travel to them when repairs are required. It is tiring. My hats are off to all of you taking care of your mom's and have siblings that feel they don't need to help but to wait and see if there is something left for them.

That is does, not dies...

This journey of Alzheimer's is a difficult one, and all journeys are not the same, but somehow in the hospital are treated the same. There doesn't seem to be any other protocol except, what day is it, what year, who is the president. While some people say things over and over and she does too, where's my purse, where's my glasses,where's my teeth, etc, she can spin a fantasy in seconds and if you do not know her, you would swear it was the truth...when she tells them to me, I say oh, that's a good one, you are nervous, relax and breath, she also is like a cartoon, if you do not give me x,y or z, I will hold my breath, until you do.

She really never wanted to have a caregiver, because she thinks she doesn't need one...and still thinks she doesn't need one, but is in moderate to late stage Alzheimer's. She doesn't like her hair being combed, but once done likes the way it looks, I cannot tell you one aspect of caring for her that goes uneventful.

I talk with her about what I know about her family, her life, her children, the memories she told me in spurts, about living in Austria during the war, etc. when I first lived in the building (2005) and does not talk about anymore...mostly everything is a no! No shower, no food, no clean clothes, no change of underwear, but these are the duties, all of these are done daily, no one really mentions their duties or maybe they did earlier on before the link went to the dysfunctional sibs, I do not know how different her life is to others or my life in regards to all of yours.

Her children are so dysfunctional, I am really on my own.

For her it is instruction through every function of daily living, I am not ordering her, or authoritarian, I am talking/walking her through it...much like when you encourage children to use the bathroom, wash their hands (with soap), get your coffee, and cereal, she likes doing the activities, but she has to be directed.

She doesn't have other issues, just that she has asthma and now emphysema, but you have to be behind her or she will go to her bed and sit on the edge, like some children did when they were punished.

When people talk with her she just agrees with whatever people say even if what people say is not the truth.

She still knits, plays Mensch argere Dich Nicht, a German version of Sorry, at night she goes to bed with a German magazine and as long as she is in her routine, gets together at the senior Luncheon once a month, but you have to encourage most of the day, with children they outgrow it but for her, it dies not change...and when you tell people that she has dementia Alz, they want to tell you how it effects her, or what she needs...

Thanks ahead of time for letting me calm down and take this time for myself.

Thankx,

Through the years she has self talk that served her well, but its not not serving her well anymore and although I am not an expert, but know her well, I believe she has senior anorexia. Couple that with undiagnosed autism which is "aloneness and sameness" her picky desires are enough to make a grown person frustrated to say the least.

In the hospital, she feeds the people a bunch of stuff and they believe whatever she says, she does not know anymore what she is talking about. She doesn't realize that her actions and stuff have consequences, I liken it to a drunken stupor, high on attention, my Sarah Bernhardt. It seems in the hospital they do not do things like they used to and things are so lax...while she was waiting to be discharged she did not even have a Styrofoam cup full of water she had two hospital gowns on and five blankets, she was dehydrated while having a UTI.
Her dinner at 6:00 was not touched, I picked her up at 8:30 because I went to a wake and then we could not leave because her saturation level was 92 and because she was going home with oxygen, she had to driven by ambulance. Yes in the hospital she looked awful...but I think they just do not care...they see everything, does it matter if a patient goes home? or to a nursing home? or to a morgue?

Anyway the nurse came here today. She doesn't need the oxygen her sat is 98 at rest and 92 when she walks and she is not in any kind of respiratory distress. What I do know is that if you do not get her to dispel the air from her lungs she cannot take the Advair into her lungs and she fakes it kind of how people used to fake smoking, you knew that they didn't inhale...same thing with her and Advair.

About the eating, either she doesn't know how long she is sitting there, she doesn't care how long she is sitting there or she thinks that I won't be vigilant enough and she can go to her anorexic ways. I make a habit of observing her when we are in a restaurant where she can order whatever she wants, she won't do it, I will have whatever you are having she will say, but at first opportunities she signals the waiter to come take it no matter what the meal is, even if they once were her favorites. It is almost like she wants to sabotage her eating anyway she can so she can get her way on the anorexia issue. Does not matter if they are small or large meals it was over two hours today for a small bowl of cereal, a small yogurt, a cup of coffee and water, I thought I would crawl out of my skin. When she ate her lunch (over two hours) she chewed but did not swallow the content but created piles of a b c food, that she tries to mask as debris, much like a child that only wants to eat dessert, that is not happening.
She spits out Pedialyte she does the same for Gatorade she won't drink Ensure, I guess I will have to go back to making the shakes with yogurt, orange Julius, etc, but she does not want to drink either, but she says she does not want to go into a nursing home, but she does not want to save herself. She does not listen to reason and when you talk louder, she say can you talk any louder in a snotty way, there seems to be no winning...so this evening I decided that an eating intervention would happen...I figure if there was behavior modification to be done, I would try it at home. One thing I notice is that she does not do the 1. fill spoon 2. put utensil in mouth, 3 eat contents and swallow 4. get a new spoonful and repeat.

She does, 1. Fill the spoon, 2. only eat half the amount, 3. doesn't eat the contents in her mouth 4. fiddles with spoon in bowl, 5, puts cereal on spoon again, 6 while chewing still, eats a small amount, This is here eating cream of wheat. So I decided to tell her to put this much on the spoon, put the whole amount in her mouth, swallow, new spoon, she was done in less than 10 minutes, much to my surprise and she went to bed at her normal time...

Now she has already been checked out, this eating isn't really new, it is only taking longer, she has nothing wrong with the throat, nothing wrong with the denture or oral sores, she doesn't have pain or even arthritis.
i tried to get her to eat pureed cause I listen to the blogs here and thought she was in some stage, but she wasn't having any of it...applesauce yes, pureed meat no, Pureed green beans no! No way!, if she was a kid I think they would have her in behavior modification, i am going to check on it.
Anybody from the UK? People we need a site like this in the US, their stuff is centrally located by tab was reading through, earlier today.

I felt nervous making the call to not use oxygen, her guardian says with the reports I made
"You would make a really good nurse.

Thank You.

Funny that made my day!

Iwent~Is it possible your 87 year old has not fully recovered after being in the hospital? The stress associated with the hospital can be very hard dementia patients, and she may need more time to get back to what her normal was before.

My mother was diagnosed with COPD in 2007. She has never progressed...she gets spirva once a day. In the beginning of the diagnosis, she had a breathing machine for treatments once a day that she did in the evenings. My mother only had shortness of breath during the summer months upon activity such as doing yard work. The cooler months in spring and autumn, all winter she had no symptoms.

As far as eating and drinking goes, do you sit with her during the entire time she is eating so she doesn't feel like she has eat alone. I ask because I know you have many other things to tend to throughout the day and taking that time to sit with her is time consuming. Maybe mix things up a bit as far as the food goes. smaller meals more often, is swallowing a problem...maybe making soft foods only, If she has no dietary restrictions give her what she likes best even if it means giving her dinner for breakfast (left overs of course) and breakfast for dinner. As for drinks, maybe crystal light, gatorade, or even propel zero (has no sugar but is still a slightly sweet drink with b vitamins). Does she have a special cup or glass to drink from, maybe a straw would help. Use bright colored napkins and paper plates, music during eating time or some soothing sounds, also one other drink is that for children they have pedilyte...is their an adult version of it? Hang in there and Hugs to you!!

Our 87 year old was discharged from the hospital. She fell in a store, tripped over a misplaced box and is now on (suppose to be on) oxygen for emphysema(?) people treating her never mentioned it, but I knew she had extreme asthma and we were doing the Advair thing and rescue inhaler which she never seemed to need much.

In the two days that she has been home, her eating which was slow is slower, getting her to drink water is a chore, she always agrees, but the behavior doesn't change. i am not at my wits end but I do not know how to solve the problem, because she doesn't get it that 2 and a half hours has passed.

She doesn't want the oxygen because she says she doesn't need it, so she takes it off. She is suppose to be on 2 liters during activity, but she was never active to begin with and nothing at rest. We did get her to go to the gym and ride the incumbent bike and she likes that, I guess is this a new "norm" ? If it is, I feel drained and a home nurse will be here today, between 12 and 2, we are still trying to keep her at home. Any suggestions? I would ask this as a separate question, but some of us are on those other, question sites and I figured, I could ask you, as I am not speaking with dys. sibs (her children). Thanks.

Margeaux~Yes boundaries!! It's the way she went about this that angered me, not that she was not feeling well. I definitely will not invite her again. A couple months ago she called me on a Thursday wanting to have a picnic with mom that weekend. I told her I was working all weekend. She asked, well can't you get one of weekend days off? I have told her several times I cannot just ask for a day off a couple days before an event, I have to request it in writing 2 weeks prior. The reason for this is so the store I am working at can make the schedule to accommodate the day I have requested...unless it is an emergency situation. She just can't accept this is how my employer and all retail businesses work.

We spent all afternoon with mom, had a nice lunch on the assisted living side then hung out in mom's room visiting.Mom's new normal is increased confusion, not able to pronounce words correctly The caregiver said she needs more assistance especially in the mornings. Instead of getting dressed and coming out to the dining room on her own, she continues to stay in bed and they have to go in and wake her up to get her dressed and out for breakfast. Breakfast is at 9am, not real early. I hate to add more meds, but wondering if we added Aricept along with the Namenda, if it might help her, or increasing the antidepressant. It is hard seeing her this way, this disease is so hard to deal with emotionally...I guess because it affects a persons brain and not their body until later stages, at least with my parents this has been the route it takes.

Good news is the tea tree oil is working wonders on my mom's toenail fungus. The nails do not have that discolored look any more, plus the dirty, thick skin build up on her big toes is looking so much better. It is still cracked but no longer looks dirty.

After lunch, sis and I took mom out front to smoke a cigarette. The activities director came out, she recognized me and called out Hi Sharyn, coming over to talk with us. She is such a great energetic person, so positive and a great memory!! She asked about my daughter having twins...I updated her on that. She talked about how sweet my mom is, goes with the flow, never a problem!!! I started laughing and she looked confused saying, she is not really like this??? I said it is the dementia, she wasn't always like this. However, her being like this now, allows us to make good memories with her. She said, oh I understand. My mother and I butted heads and did not get along at all. As she aged and needed help, I told her things would be this way or I would not help. She set the boundary and her mother accepted it. She said they became best buddies during the last 10-15 years her mother was alive She did not have dementia.

Take care and enjoy some time for yourself everyone!

Alison,

How goes it?
Wow! So dad, couldn't do it? Yes, I think that for some people....it's not as simple as it may appear. You're also dealing with a man who doesn't like doing things for himself on top of it.

I know it made me very nervous the thought of having to trouble shoot catheter problems with my husband last year. I witnessed how 2 nurses couldn't insert it properly, and it caused him pain. Delicate area!
I totally understand how you may not feel comfortable doing something of the sort,
because he is your dad.

I hope you get the visiting nurses squared away.

Hugs,
Much Love & Light! Margeaux

lwentanon,

You are so sweet. You really sound as if your heart is in the right place with the lady. I'm so sorry about the fact she's been in the hospital.

But, you are nursing your surgery still. Be careful with that too, because this way you'll still be good to go w/your charge. My neighbor had venous surgery a year ago. She didn't do some things that I know she should have been doing, such as trying to walk a little. Now about a year and a half later.....she's having a very hard time.

Hugs,
Much Love & Light! Margeaux