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Old 09-20-2011, 12:04 PM   #1
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Angry Caregiver Scaring Family

Update: My MIL who is 88 is declining in health. She can no longer go to the bathroom by herself because she can't get up. Her other symptoms are still visible, i.e. sundowners, anxiety...

Lately she's been crying incessantly saying her throat is burning and her comes are burning. The doctor said that she was just having anxiety.

some of the family members are concerned that her finances are dwindling fast. She has a caregiver 5 days a week. With all of this health issues and finances, some of the family members are ready to find a home for her. The caregiver has been telling two of the kids (my husband included) that she would die in a nursing home I feel she is just protecting her interest. She also said that MIL is bad off compared to alot of other AZ patients she seen. Well compared to what I've read on the board I think she's average, I've read alot worse, especially with the incontinence and wandering.

Well today she was taken to the hospital and has pneumonia. I'm still just reeling from what she is telling the family!! I don't see how this is in the best interest of the patient. I also found out she is writing checks to pay her bills. The bills were supposed to be left in a tray for the family members to pick up and pay (yes I don't know why they don't have her on auto pay).

Sorry had to vent....

 
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Old 09-20-2011, 12:07 PM   #2
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Re: Caregiver Scaring Family

Oh i meant to say that the caregiver is writing checks out to pay MIL bills.

Thanks for listening... Would a NH have detected her pneumonia? Until recently the family was getting her vitamin transfusions (which I thought was hard to sit for an hour for if it were me). These are hard on the veins too. At 88, seems not in her interest to put her thru this.

 
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Old 09-20-2011, 12:39 PM   #3
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Re: Caregiver Scaring Family

Mitsy,

I understand your problem totally! We had been there!!

First of all, it depends on the caregivers, most of them feel that home care is better and personal. There are 2 issues here: first, their job is at stake if you move your MIL to a facility. Secondly, they really believe that home care is better. This part is not really bad but it is common for some people to feel that way. Ok, if you have a big family like some caregivers do, then a big family may be able to help out by taking turns.
Now you are talking about a smaller family where everyone has his/her jobs or hangups and cannot be there 24 hours for the MIL, it is really difficult!!

My FIL has stage 7 AD (Alzheimer's disease) this year. He had been home from 2004- July, 2010. We hired the same home care co. in late 2005. Gradually it became 24 hours until summer/late July 2010.
Throughout this, they kept telling me, oh my FIL will not make it in the nursing home and how badly they are in the home and it is not 24 hours and blah blah blah. My FIL is not sociale so he cannot interact with the peers, blah blah blah. Oh how about home comfort care, he is not dying, but may die soon, blah blah blah. The worst part is the home care nurse kept telling us when he would die, blah, blah, blah....

A whole bunch of stuff to make us feel guilty.

Ok, finally in 2009/2010, we felt 24 hours home care is WAY too expensive,. So we found a nice residential home with local reputation for dementia people, and we waited 9 months and moved my FIL to another state to be closer to us by flight. Everything worked out well.

Guess what, my FIL loves this new home and he got new peers and activities and attentions. He got the best medical attention here. The doctor is better than the GP back home. He has done well for a year and now even when he is sicker, they know how to handle it.
I admit if my FIL had minor surgeyr, he needs one on one caregivers. But now he had done all that, now he only needs comfort care and this home is super for him. And he is not in the worst wing for end stage yet! He is 90!
No family near his old house so he had to leave!

We have no regret although we thanked the home care crew for their hard work. But at some point, a nursing home for dementia people is a real solution as my FIL was sicker!

The key is to find a good nursing home with memory unit or for dementia only. They are confined in the house with security and yet there are outings and activities and etc. I never dreamed that my FIL would love this new place!

You hired your caregiver and you can fire her as well. It is your call. Your MIL is the priority. Don't worry about the caregiver's threat or warning or whatever. She is not god.

Good luck!

Hugs,
Nina

Last edited by ninamarc; 09-20-2011 at 12:49 PM.

 
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Old 09-20-2011, 12:41 PM   #4
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Re: Caregiver Scaring Family

Sorry I entered the post twice...

Last edited by ninamarc; 09-20-2011 at 12:46 PM.

 
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Old 09-20-2011, 12:53 PM   #5
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Talking Re: Caregiver Scaring Family

My MIL had 3 kids and they rotate on Sundays. Most of the Siblings barely talk to each other. One of the brothers is the biggest obstacle. There was an article that talked about a brother being their mom's husband, which is what he is. She replaced her dead husband with him and handicapped him.. He's 50 with no life. He is getting more and more antisocial with age. I almost believed that if his mom died that he'd still be taking care of her dead body in her bed. anyway enough of that thought.

On the days that the siblings are there for their weekend, all they do is babysit. They don't give her her meds, they don't cook a home meal, they don't clean house. Most days she doesn't want to go anywhere (she's getting where she can't) so they go and pick up a hamburger. Junk that she really shouldn't be eating. One of the other brothers is so exhausted after taking care of her for one day that he has to take the next day off work. Mostly none of the kids want to deal with this and are happy to let someone else do it, all the while saying they love their mother.

I have to wonder how I would be taken care of (I actually don't need to wonder, I've seen how it works, making be cook one day after surgery, etc) and I'm not impressed. I just don't see how so many families are this dysfunctional. I read about it on this board and can't believe what people have to go through.

I've asked what the cost of 24 hour care that she is getting vs a home and they said it's about the same. I don't actually believe that. Besides her $180 water bill, phone bill that she doesn't use, cable tv, homeowner's insurance, electricity....

Ughh. Thanks for listening. I will try to talk to the semi-sane brother and see what comes up.

 
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Old 09-20-2011, 03:13 PM   #6
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Re: Caregiver Scaring Family

your mil will probably need rehab when she gets out of the hospital. i know its hard, but the caregiver doesnt sound right

 
Old 09-20-2011, 03:15 PM   #7
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Re: Caregiver Scaring Family

what do they do in rehab? I've never heard of rehab for pneumonia.
I found out that they said it was bacterial pneumonia and not viral. What's the difference?

 
Old 09-20-2011, 03:26 PM   #8
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Re: Caregiver Scaring Family

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Originally Posted by mitsy View Post
what do they do in rehab? I've never heard of rehab for pneumonia.
I found out that they said it was bacterial pneumonia and not viral. What's the difference?
My FIL had pneumonia before (twice or more) and he only needed to stay in the hospital for 2 or 3 days given antibiotics.
For bacterial pneumonia, it may be caused by aspirational pneumonia (the food goes down to the lung due to swallowing problem for AD patients) or regular pneumonia due to bacteria. This kind of pneumonia can be treated by antibiotics. Once she is cured by the med, she can go home.
Some people have worse case and need oxygen in the hospital and etc. Viral pneumonia is very difficult because antibiotics does not deal with virus. There may be some some drugs for the virus but it is hard. That is why it is necessary to have flu shots every fall for the elderly.
My FIL never had rehab so it depends. Some people have COPD (some lung disease) so they may need rehab.

Anyway, I sure hope your MIL can be treated quickly and go home. If she is sicker and stays in the hospital, she may need a caregiver to watch over her.

In the future, I need to warn you, if she is very sick, one caregiver 24 hours or live-in will not be enough because it is going to be 24 hours and you may need to hire more people to rotate. At one point, we got 4 caregivers to take turns everyday and on weekends.

Take care,
Nina

Last edited by ninamarc; 09-20-2011 at 03:33 PM.

 
Old 09-20-2011, 03:31 PM   #9
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Re: Caregiver Scaring Family

Wow, that is alot of caregivers. I did assume that Visiting Angels would rotate their people, however, it seems that they don't rotate. More than likely since she was violent at the other caregiver then they stuck with the one.

Hospital said she'd be there around 3 days. They will probably have to sedate her. She's screaming and trying to pull out her tubes. Problem is she wanted to go the emergency room and she likes that because of the attention. Once they put her in a room, she's wanting to go home. Does UTI's cause this kind of infection?

 
Old 09-20-2011, 03:41 PM   #10
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Re: Caregiver Scaring Family

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Originally Posted by mitsy View Post
Wow, that is alot of caregivers. I did assume that Visiting Angels would rotate their people, however, it seems that they don't rotate. More than likely since she was violent at the other caregiver then they stuck with the one.

Hospital said she'd be there around 3 days. They will probably have to sedate her. She's screaming and trying to pull out her tubes. Problem is she wanted to go the emergency room and she likes that because of the attention. Once they put her in a room, she's wanting to go home. Does UTI's cause this kind of infection?
It is still necessary to have a main caregiver who knows her and can help her. We had a main caregiver whom my FIL really liked. But she was only one person and she had to go home for her kids and husband. So we had 2 or 3 others to help out in night time and on weekends.

If your MIL is violent, you may want to try some antidepressant/antipsychotic drug. The trick is not to get mad at your MIL or argue/reason with her. Try distraction and etc.

UTI does not cause pneumonia but it is another condition that may cause her anger because UTI can make her very moody. It can be treated by antibiotics also.

It is the same like my FIL. He loved ER and attention. But once they hospitalized him and gave him IVs, oh my God, it is like hell. He tried to escape at night and the caregiver had to help him. He never slept overnight in the hospital wanting to escape. In the day he was psychotic and slept more because he was tired. Once he thought people were trying to kill him like we put down the animals!! (This remains in his mind that he thinks people can just kill him like that!)

You need to hire a caregiver to be there overnight to help her if she is very aggressive. The nurse is too busy to help every patient. Your relatives should be there to make sure she is OK. Usually the nurse should tell you what is going on but the nurse cannot promise you anything.. So the family has to be there.

One reason that my FIL moved to the residential home is that he was hospitalized too many times (Once a year!!)

Good luck,
Nina

Last edited by ninamarc; 09-20-2011 at 03:43 PM.

 
Old 09-20-2011, 03:50 PM   #11
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Re: Caregiver Scaring Family

I was hoping that the hospital would recommend that she be moved to a permanent residence so that they family would quit worrying that they made the decision.

She's been telling people that some carnival people made her drink something and it made her throat burn. The doctor has checked her throat and there's nothing going on there.

Thanks for all the information it always helps!!

 
Old 09-20-2011, 08:10 PM   #12
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Re: Caregiver Scaring Family

Mitsy... yep you have a mess but it is one that can be fixed. As for home care... it is usually more expensive than a care facility because it is one on one. I will say it is more difficult to get the appropriate care at home. There is just one person, be it hired or family. They have to cook, clean, take care of the loved one, entertain, and anything else that comes up. It is a round the clock job. In a care facility you have a chef, a nurse, fresh caregivers every shift, an activity department, a social worker, and other personnel. There are some that do say "Your loved one will die in a nursing home". Will they die sooner there than at home? Probably not. A loved one with dementia has a terminal illness that has no cure and no hope of improvement. They are not going to live another 20 years. They are not going to improve. They are not going to die just because they are in a care facility vs a home situation. I do believe the in home caregiver is protecting her interest with that statement.

As for family... most of them are dysfunction to some degree and when dementia is added to the family dynamics it only makes the rest of the family more dysfunctional! Every family member will have a little different understanding of the disease and what needs to be done. Some will be in denial and want everything to remain status quo denying there is a problem. Some will say they get it but not understand and have a very different idea of what needs to be done. Some will truly get it and try to make the best decision for the loved one. Some will understand but want it to go away along with the loved one and can't seem to help. Each thinks they are right. The ones that really get to me are the ones that think it should all remain status quo but don't do anything to help.

As for the pneumonia, if she was seen by a facility nurse then the pneumonia might have been detected a little sooner but the outcome would have been the same. A few days on IV antibiotics is usually enough. If there are residual breathing problems or weakness then rehab might be in order for breathing treatments or strength but otherwise they go right back to where they can from.

If Mom was being kept at home and there is no neglect then they would not recommend a different situation unless there was a suggestion from the family that the situation needed to change. If the family informs the hospital social worker that Mom needs a different living arrangement... then they would start looking for alternatives. It is very much a family decision unless there are indications of neglect. What you can do is talk to the social worker and explain to her that you believe she would be better off in a care facility. Then the social worker can take it from there and perhaps the family would follow. Yep, it is difficult for a family to decide it is time to place Mom. There are many levels of unwarranted guilt that goes through each family member. If you can get the social worker to recommend placement it can take the pressure off the family... but somebody has to set that ball in motion.

A UTI does not cause pneumonia but a UTI can cause behavioral problems. Any time there is a sudden worsening of behavioral issues... a UTI should be suspected. But the pneumonia is a different medical issue.

I am very much for feeding the elderly what they want rather than what we think they should eat. If they eat home cooked meals then good for them. If they want pizza and hamburgers then that's ok too. It is caloric intake that is important.... unless the loved one is a diabetic. The intake of a little more cholesterol or saturated fat is not going to hasten then end. Those are life long issues not something to worry about in the short term. So as long as Mom is getting something to eat that she likes... let that argument go

I do hope things will work out for the best.... hang with us and vent all you want to! It is good to get all that craziness out of your system so you can think more clearly on how to help Mom

Love, deb

 
Old 09-20-2011, 10:34 PM   #13
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Re: Caregiver Scaring Family


Thanks for listening... Would a NH have detected her pneumonia? Until recently the family was getting her vitamin transfusions (which I thought was hard to sit for an hour for if it were me). These are hard on the veins too. At 88, seems not in her interest to put her thru this


Wait, vitamin transfusion? Through the IV? Well, these elders hate IVs! You cannot really make her take those stuff by force or IV. She would not understand.
A NH can do better to detect the pneumonia and even try to give them preventative medicine. Where my FIL is, they gave everyone some preventative med when there was a bad flu going on. Definitely a nurse in the house knows better than a caregiver in home care. It is easier for the nurse to follow and know what is wrong. At home, we were not able to tell unless my FIL went to the ER. So NH helps a lot and reduce the trip to the ER.
They would then give antibiotics right away and my FIL didn't have to go to the hospital.

If your MIL is not that sick and will get out of hospital soon in 3 days, there is no medicare coverage for 5 months if she goes to a nursing home. (There would be coverage for NH if she stays like 4 or 5 days.) But you can always ask the social worker to help you out to find the NH for her.

If she goes directly from the hospital to the NH, the chance is that the NH will not be as good because it is last minute call for empty bed in the NH.

You need to shop for a good NH for dementia before you can move your MIL first. Ask the social worker for a list.

Take care,
Nina

Last edited by ninamarc; 09-20-2011 at 10:40 PM.

 
Old 09-21-2011, 06:58 AM   #14
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Re: Caregiver Scaring Family

We used home health care for a few years, to supplement a day care center. We kept DH home as long as it made sense. This kept him in familiar surroundings, with his usual routines.

It stopped making sense to continue to care for him at home when he started pooping and peeing on the floor, staying up all night (I was regularly getting about 3 hours sleep - thank heavens my employer was understanding, and that I didn't kill anyone by falling asleep when I was driving to work), was unable to use silverware or understand us when we spoke to him anymore, opened a car door when the car was moving on the way to day care, wandered away once when I was unloading groceries (it took several hours to help us find him, with the help of the police), and was unable to do any of his own personal care such as toenails, shaving, brushing his teeth or dressing without help. He was in Depends. Our youngest was in high school, and was a big help -- but had no life. Everything from getting groceries to getting him to lie down at night was a huge effort.

Others have reached stages where their loved ones stop eating entirely, can't walk anymore (DH is at the stage where he is losing his ability to walk, and falls frequently), or have medical issues that they can't communicate.

We finally recognized that the NHs have experts in this disease. The NH workers are there 24 hours a day, and have seen it all. Our loved ones have more interactions than just being locked in their own homes, since there are people coming and going. Nursing homes with Alzheimers' wards have staff nurses, aides, activities, physical therapy, social workers and visiting doctors (including a very welcome dentist, podiatrist and others). Nothing stops anyone from spending every day visiting their loved one. The patient may have some of their own belongings. I've noticed on DH's ward for Stage 7+ patients that they lose the ability to know what is their property...you never know what property you're going to find in each patient's room or closet!

As far as finances go, your husband's family may be trying to save the house and other assets. My DH's nursing home is almost $9,000 a month. This is not an urban location and it's in a state with a lower cost of living, so I'd expect that others pay a lot more. Yes, it's expensive but your MIL might qualify for Medicare for some period of time if she is receiving treatment with an expectation of improvement. Alternatively, she may also qualify for Medicaid and the government will place a lien on the house. Your brother in law may have some rights to continue living in the house, which the family should investigate. Your husband and the other brother may be saving this brother's life by relieving him from caregiving. He could be seriously depressed, and he's clearly trading his life for his mother's life.

There are no easy answers though, and this entire process is stressful for families. From my years on the board, it seems to be the rare family that can pull together and that is not divided by this disease.

 
Old 09-21-2011, 07:35 AM   #15
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Re: Caregiver Scaring Family

On the NH that were checked out, the cost was just a little less expensive than having a caregiver come and stay 24 hours, 5-6 days a week.

On top of staying home with a caregiver, she has to pay for telephone, electric, cable tv, water, electricity, homeowner's insurance, property taxes. These all add up and they just say she's going thru her money fast and won't have enough. The daughter has POA and she's lax about checking her mom's accounts. Has no idea what is in them. When MIL was just a little better, her daughter took her shopping and the MIL spent $1000 on clothes to wear to church. I know she wanted to make her feel good, but a responsible person would have know to curb this craziness. I work in a Financial environment and it appalls me to see how they can't handle basic math, etc. I see alot of this carefree spending in my Husband and it scares me.
MIL has a brother in California that also has AZ and I've asked the family if they check with the other family and see how they are doing andhow the disease is progressing with him, but no they haven't bothered. I don't have their phone # so I can't do this and it's not my place to do so.
Part of the daughter's fear of putting her mom in a home is that she knows her mom won't go but kicking and screaming. Once she was so jealous of her daughter's MIL that she worked herself into a tizzy and fainted at the store. I just thought to myself, 'get real'.

Anyways, we'll see how she's doing after she gets out of the hospital. Just another day in planet AZ.

 
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