WWYD - Father with Azlheimers & Mother ill - Update 11/26

[DisneyWorldMimi]

My father has Azlheimer's and was diagnosed in 2013. 2014 was not too bad of a year. When I went to visit them, the first couple days he thought I was his sister. We finally got that straightened out and it was fine the rest of the visit. In 2015 my mom let me know that he was rapidly declining. I took my granddaughter out over the summer and he wasn't too bad, but no where near as good as the year before.

In December when we visited, he was worse. He seemed to be sleeping a lot during the day and just not really alert. I happen to find a list of his medicines and in February of 2015 he was put on a very strong anti-psychotic/anti depressant - Olanzaprine. When I checked this medicine and being prescribed for Alzheimer's patients, it said that it was a "Black Box Medication":

Antipsychotic medications for hallucinations, delusions, aggression, hostility and uncooperativeness
​

• • newer "atypical" agents such as aripiprazole (Abilify®); olanzapine (Zyprexa®); quetiapine (Seroquel®); risperidone (Risperdal®); and ziprasidone (Geoden®)
  • older first-generation drugs such as haloperidol (Haldol®)

The decision to use an antipsychotic drug needs to be considered with extreme caution. A recent analysis shows that atypical antipsychotics are associated with an increased risk of stroke and death in older adults with dementia. The FDA has asked manufacturers to include a “black box” warning about the risks and a reminder that they are not approved to treat dementia symptoms. The warning states: “Elderly patients with dementia-related psychosis treated with atypical antipsychotic drugs are at an increased risk of death compared to placebo.”
​

My sister was there when he was prescribed it. She said she didn't question it because of the things that my mom was saying he was doing. He was supposedly be belligerent and saying inappropriate things. My dad has never been a violent person, EVER. We don't know what he had been saying to her, but we also do not know what time period he was in either.

I felt he should be taken off the medication because it was causing his confusion and for him to sleep constantly. I also attributed his "rapid" decline to this medication.

Fast forward to the end of May and I get a text from my brother asking if I could come out the following week, that my mom is sick. I was on a plane the following week. The day after I arrived, she woke up in severe pain and we got her an appointment with her doctor. A friend took her to the appointment and then let me know that they were sending her to the ER. She stayed for awhile and then came home. I was able to get her husband to come sit with my dad. (Mom has used him to stay with dad quite often). The wife was a forever caregiver. I went to the ER to be with my mom. They gave her a prescription for pain and told her she had Diverticulitis. Within the first couple days, I took my dad off the olanzapine and within two days I could see a difference. My brother came up after I had mentioned taking him off this. When he arrived he was angry and asked if I had taken my dad to the doctor. I said that I hadn't but talked to him about it and he was willing to give it a try. My brother wasn't happy, but went along with it. After being around him for the rest of the Sunday and all of the Monday, he made a comment after dinner that he wasn't sleeping as much and was more alert. I said that this was the result of just 4 days off the med.

My mom was not getting better. Sometimes it was her diverticulitis and other times it would be a pain in her back and groin area. The physical therapist found that her hip was out of alignment. He got it back into place, but did not know how long it was out of alignment. Then near the end of the month when I said I would have to be going home, she was making herself sick with worry.

My mom had kept talking about how my sister had said she would be out on August 16 and at the time she was told this, she thought that was 6 months away and she could be in the hospital by then.

After I left, my niece came out for about a week near the end of July and then my sister arrived at the beginning of August instead of the 16th. One day when I called, my sister tells me "They are down for a nap! They take a 2 hour nap for about 1 to 3 or 3:30 depending on when they get down." She was very curt about it. Fine. I called a couple days later and now they are taking a nap from 2 to 4.

I tried calling another day and they were at a hearing appointment. Then I tried one morning about 8:30 and my mom said that was a good time as they were just finishing breakfast. She constantly tells me things about what happened to her while she was sick and I have to tell her that I was there for a month and know exactly what was going on with her. At the beginning of this week they went down to my brother's for Monday afternoon until Tuesday afternoon because they were having wood look tile placed in the hall. Any other time I would have not problem not being able to get a hold of her. But because she has been so sick and is just starting to get better, when I tried to call on Tuesday morning and could not get through on the house phone twice, I tried her cell phone, but it also just rang and then went to voice mail.

Yesterday I called to talk to her at 9 her time and they were just sitting down for breakfast. We ended up in an argument and she was upset. Plus she also must have had the phone on speaker because I could her my sister very clearly in the back ground and then the friend came up and said that my mom was getting up set. I was trying to tell my mom things and she kept interrupting me and so I had to raise my voice at times for her to hear me because she also did not have her hearing aids in, so then I was yelling at her. I couldn't even finish a sentence and she would interrupt me. I said that I was mad because both my sister and my brother had contacted hospice in January, but my dad was not eligible because he could still do things for himself. He has declined and with my mom being very sick, my sister contacted them at the end of July and they got over there fast and got it set up that someone comes in 3 days a week to bathe him and then they have Jeanne (the former caregiver) who comes over and makes breakfast for them most days.

I questioned both my sister and brother as to why I wasn't told about hospice while I was there. I could have gotten it in place before I left since my mom was still sick.

I was also mad that they do not admit that never once questioned the medications either of them are on. They just go along with what ever the doctor orders. My sister says some have certain regimes that they use. Sorry i don't buy that. He could have been put on a lot lower anti-depressant for his mood swings. But this is all moot as hospice has taken him off of everything.

I have been sending texts to both my sister and brother asking them questions about things regarding things that need to be done. My mom has a referral to see a neurologist and she hasn't made that appointment even though she has numbness in her leg from the knee down. It was originally the entire leg. Plus she has had numerous falls and I feel she need to have an MRI done. She will have to be sedated as she is very claustrophobic.

My brother told me that letting me know they had gone to his house was non issue because I knew that my sister was there. Plus that most of the other stuff I had sent them was just rambling and trying to find something to be mad about. I had asked him about her leg and got no response.

My mom said that she would call today and of course that did not happen. She says she hardly has her cell with her at all. But when I was there, she was constantly looking for it. Then she says that my brother told her she was in bed for two days and didn't get up to go the bathroom. I said if he was in the living room he would even know if she had gotten up. If she wasn't going to the bathroom that means he wasn't keeping her hydrated. I kept some type of drink at her bedside 24/7.

My mom thinks my brother is perfect and my sister is obviously running to him if I say something to her that she doesn't like or if I am accusing her of something (for good reason). My mom has let my sister steal things from her and won't take a stand against it. My brother says to just put it in the past and let it be.

Me, I am just the middle child who doesn't know anything and have no right to worry about my parents in any way. I am no longer trying to get my mom to put my dad in a home, because she has the help she needs. But that was thrown in my face as it is no longer up for discussion, PERIOD. I hadn't even brought since I left.

My mom lost over 40 lbs over 2 years, but she thinks she lost them in the last couple months. I keep having to remind her that she was 130 in December and she lost 10 lbs, almost 15 lbs while she was sick. The reason she lost the 40 lbs was because my sister had made up some meals and my mom was giving the bigger portion (2/3 for my dad and 1/3 for her).

I am stuck in Florida not knowing what is going on and what else might walk out of the house when my sister leaves. Though I have given my brother fair warning that if my mom mentions that something else has gone missing, I will call out my sister on everything she has taken. In February, she took my dad's breakfast bowl. It had "Good Morning Luv" on it and he had used it for years. My daughter notice that he used a specific spoon too when she was little. My bother tried to give him cereal in a different bowl and he wouldn't eat it. I found one that is a similar shape and he would eat out of that.

Sorry this is long and rambling. Do you think that with how sick my mother had been, just asking for a quick text to say they were going to my brother's for a day or two was asking too much? This has happened before when she wasn't sick and her phone died and didn't have a charger with her. I tried calling her house at all different hours and got no answer, then tried her cell phone. I eventually texted my brother who said they were there. I felt that it because of how sick she has been, that I should have been told that they weren't going to home. I was told by my mom that she would call today and I never got a call. I asked her yesterday to just read the text messages that I sent her. I later added an apology for getting her upset. But I have been upset for two days about this whole ordeal. Mainly because I can't call my mom with out my sister hovering over her while she is talking to me.

 

[kimblebee]

I know this is going to be the last thing you want to hear, and I'm sorry it's going to hurt, but you need to BACK OFF. Not go away completely, it's your mom and dad and you have every right to know what's going on..but you need to give everyone time to breath. I was feeling overwhelmed by you, just reading this.

Your brother and sister are doing the best they can..it's their parents they are watching get sicker and sicker too. They are doing the best they can and you have to realize that. You should have NOT stopped your dads medication without discussing it with his dr. There are ramifications to stopping some meds cold turkey. You could be counteraffecting the meds he is on.

I know, and totally understand, that you want to be a part of every decision but you just can't be..because you aren't there. You have to trust your brother and sister to do what's best, or you will see that you are involved less and less. Not on purpose, but because it gets overwhelming.

My husband has severe depression and some days when he's at work he will text me non stop on his breaks. I love him to death, but sometimes I have to tell him to stop, it's too much. Especially when he's going on and on about a dr appt or something that's coming up or a med he wants to change or stop on his own.

Please, let them do what they need to do with minimal interference, and I bet you'll be kept in the loop more often.

 

[disykat]

I voted other because I understand why you are upset. However, your siblings are taking on the majority of care due to proximity and my guess is they feel very criticized by you. Changing your dad's medications without consulting with his physicians was just plain wrong so I can understand their feelings. On the other hand, if your mom is reporting things about them that are concerning you have some need to intervene.

It's easy to say he's NEVER been violent when you live far away. It seems like your mom gets upset when she talks to you so maybe minimizing that for a while would be best. At this point, your mom seems happy with the care she is getting so you may have to find a way to let it be and have your time on the phone with her be about pleasant things.

 

[hereyago]

While I do think, there should be better communication, your Mom sounds like something may be going on with her cognitively as well.

Do your siblings have Durable POA and healthcare proxy over your df and mom?

Your sister may be hovering if your mom has issues that make her say things that aren't true, like she didn't go to bathroom for 2 days, etc.
.
Please don't try to supervise from the sidelines.

 

[barkley]

You should have NOT stopped your dads medication without discussing it with his dr. There are ramifications to stopping some meds cold turkey. You could be counteraffecting the meds he is on.

this was my immediate thought reading the post. NO CHANGES should be made to ANOTHER PERSON'S meds without consulting with their treating physician. the med in particular that was stopped is one that a quick google search confirms my fears on-it must be slowly and gradually weaned off with medical oversight b/c (1) the withdrawals are painful and may mimic other conditions such as severe flu and tremors and (2) going 'cold turkey' can cause SEVERE psychotic episodes as well as seizures.

unless a person is INTIMATLY involved in every doctor's appointment so that they are aware of how the medication plan is formulated, has discussed with a doctor IF discontinuing a particular medication is even an option-and then getting the doctor's approval (and necessary adjustments that may be needed w/other meds to coincide), 'choosing' to ask an Alzheimer's patient if they just want to quit taking one of their medicines is dangerous at best and could be construed as and pursued as elder endangerment/abuse (both for the patient and the other elderly person in the household who may be endangered by the improperly withdrawing patient).

being so far away from the minute to minute, day to day challenges and demands can make you unaware of what all is occurring. you may have never seen your father behave in a violent manner-doesn't mean he hasn't. being responsible for watching over every need, want, desire of 2 elderly people in poor health is VERY taxing and time consuming-made only more difficult by someone 'armchair quarterbacking' on every decision you make.

perhaps it would help everyone if you could make an arrangement wherein on the same day of the week you get a weekly update text or email on just their med stuff. it could be as simple as 'no appointments this week, new med for incontinence working, seems to be feeling well' to more extensive ones like 'ortho apt today a.m.-will follow up w/results, doctor discontinued x medicine due to stomach distress, taking y medicine in it's place'. as far as your parent's whereabouts-do they even want you to know? if they do then someone can set them up with a little calendar that they can send to you on a basis they are comfortable with-daily, weekly, yearly................if they don't-don't be offended. it's very hard giving up one's independence and going from parenting ones children to being parented BY ones children.

there are some great books on learning to deal with these issues, concerns and confusions-and how to ideally come together as siblings to provide for the best possible care for your parents.

 

[NHdisneylover]

I wil keep this short. I voted other. Normally I think people should be updated--but after you went in and stopped your dad's medications without even consulting his doctor (this can be very dangerous) and it is clear you simply do not believe your father was threatening with your mother based on your past experiences with him (that can flip in a heartbeat with alzheimers--I have seen it first hand in my grandfather) and are willing to make huge decisions and criticize when you are not there to see the day to day hell that it probably is for those dealing with all this----I think it is reasonable that they kept you out of the loop. Sorry.

 

[Pea-n-Me]

My father has Azlheimer's and was diagnosed in 2013. 2014 was not too bad of a year. When I went to visit them, the first couple days he thought I was his sister. We finally got that straightened out and it was fine the rest of the visit. In 2015 my mom let me know that he was rapidly declining. I took my granddaughter out over the summer and he wasn't too bad, but no where near as good as the year before.

In December when we visited, he was worse. He seemed to be sleeping a lot during the day and just not really alert. I happen to find a list of his medicines and in February of 2015 he was put on a very strong anti-psychotic/anti depressant - Olanzaprine. When I checked this medicine and being prescribed for Alzheimer's patients, it said that it was a "Black Box Medication":

Antipsychotic medications for hallucinations, delusions, aggression, hostility and uncooperativeness
​

• • newer "atypical" agents such as aripiprazole (Abilify®); olanzapine (Zyprexa®); quetiapine (Seroquel®); risperidone (Risperdal®); and ziprasidone (Geoden®)
  • older first-generation drugs such as haloperidol (Haldol®)

The decision to use an antipsychotic drug needs to be considered with extreme caution. A recent analysis shows that atypical antipsychotics are associated with an increased risk of stroke and death in older adults with dementia. The FDA has asked manufacturers to include a “black box” warning about the risks and a reminder that they are not approved to treat dementia symptoms. The warning states: “Elderly patients with dementia-related psychosis treated with atypical antipsychotic drugs are at an increased risk of death compared to placebo.”
​

My sister was there when he was prescribed it. She said she didn't question it because of the things that my mom was saying he was doing. He was supposedly be belligerent and saying inappropriate things. My dad has never been a violent person, EVER. We don't know what he had been saying to her, but we also do not know what time period he was in either.

I felt he should be taken off the medication because it was causing his confusion and for him to sleep constantly. I also attributed his "rapid" decline to this medication.

Fast forward to the end of May and I get a text from my brother asking if I could come out the following week, that my mom is sick. I was on a plane the following week. The day after I arrived, she woke up in severe pain and we got her an appointment with her doctor. A friend took her to the appointment and then let me know that they were sending her to the ER. She stayed for awhile and then came home. I was able to get her husband to come sit with my dad. (Mom has used him to stay with dad quite often). The wife was a forever caregiver. I went to the ER to be with my mom. They gave her a prescription for pain and told her she had Diverticulitis. Within the first couple days, I took my dad off the olanzapine and within two days I could see a difference. My brother came up after I had mentioned taking him off this. When he arrived he was angry and asked if I had taken my dad to the doctor. I said that I hadn't but talked to him about it and he was willing to give it a try. My brother wasn't happy, but went along with it. After being around him for the rest of the Sunday and all of the Monday, he made a comment after dinner that he wasn't sleeping as much and was more alert. I said that this was the result of just 4 days off the med.

My mom was not getting better. Sometimes it was her diverticulitis and other times it would be a pain in her back and groin area. The physical therapist found that her hip was out of alignment. He got it back into place, but did not know how long it was out of alignment. Then near the end of the month when I said I would have to be going home, she was making herself sick with worry.

My mom had kept talking about how my sister had said she would be out on August 16 and at the time she was told this, she thought that was 6 months away and she could be in the hospital by then.

After I left, my niece came out for about a week near the end of July and then my sister arrived at the beginning of August instead of the 16th. One day when I called, my sister tells me "They are down for a nap! They take a 2 hour nap for about 1 to 3 or 3:30 depending on when they get down." She was very curt about it. Fine. I called a couple days later and now they are taking a nap from 2 to 4.

I tried calling another day and they were at a hearing appointment. Then I tried one morning about 8:30 and my mom said that was a good time as they were just finishing breakfast. She constantly tells me things about what happened to her while she was sick and I have to tell her that I was there for a month and know exactly what was going on with her. At the beginning of this week they went down to my brother's for Monday afternoon until Tuesday afternoon because they were having wood look tile placed in the hall. Any other time I would have not problem not being able to get a hold of her. But because she has been so sick and is just starting to get better, when I tried to call on Tuesday morning and could not get through on the house phone twice, I tried her cell phone, but it also just rang and then went to voice mail.

Yesterday I called to talk to her at 9 her time and they were just sitting down for breakfast. We ended up in an argument and she was upset. Plus she also must have had the phone on speaker because I could her my sister very clearly in the back ground and then the friend came up and said that my mom was getting up set. I was trying to tell my mom things and she kept interrupting me and so I had to raise my voice at times for her to hear me because she also did not have her hearing aids in, so then I was yelling at her. I couldn't even finish a sentence and she would interrupt me. I said that I was mad because both my sister and my brother had contacted hospice in January, but my dad was not eligible because he could still do things for himself. He has declined and with my mom being very sick, my sister contacted them at the end of July and they got over there fast and got it set up that someone comes in 3 days a week to bathe him and then they have Jeanne (the former caregiver) who comes over and makes breakfast for them most days.

I questioned both my sister and brother as to why I wasn't told about hospice while I was there. I could have gotten it in place before I left since my mom was still sick.

I was also mad that they do not admit that never once questioned the medications either of them are on. They just go along with what ever the doctor orders. My sister says some have certain regimes that they use. Sorry i don't buy that. He could have been put on a lot lower anti-depressant for his mood swings. But this is all moot as hospice has taken him off of everything.

I have been sending texts to both my sister and brother asking them questions about things regarding things that need to be done. My mom has a referral to see a neurologist and she hasn't made that appointment even though she has numbness in her leg from the knee down. It was originally the entire leg. Plus she has had numerous falls and I feel she need to have an MRI done. She will have to be sedated as she is very claustrophobic.

My brother told me that letting me know they had gone to his house was non issue because I knew that my sister was there. Plus that most of the other stuff I had sent them was just rambling and trying to find something to be mad about. I had asked him about her leg and got no response.

My mom said that she would call today and of course that did not happen. She says she hardly has her cell with her at all. But when I was there, she was constantly looking for it. Then she says that my brother told her she was in bed for two days and didn't get up to go the bathroom. I said if he was in the living room he would even know if she had gotten up. If she wasn't going to the bathroom that means he wasn't keeping her hydrated. I kept some type of drink at her bedside 24/7.

My mom thinks my brother is perfect and my sister is obviously running to him if I say something to her that she doesn't like or if I am accusing her of something (for good reason). My mom has let my sister steal things from her and won't take a stand against it. My brother says to just put it in the past and let it be.

Me, I am just the middle child who doesn't know anything and have no right to worry about my parents in any way. I am no longer trying to get my mom to put my dad in a home, because she has the help she needs. But that was thrown in my face as it is no longer up for discussion, PERIOD. I hadn't even brought since I left.

My mom lost over 40 lbs over 2 years, but she thinks she lost them in the last couple months. I keep having to remind her that she was 130 in December and she lost 10 lbs, almost 15 lbs while she was sick. The reason she lost the 40 lbs was because my sister had made up some meals and my mom was giving the bigger portion (2/3 for my dad and 1/3 for her).

I am stuck in Florida not knowing what is going on and what else might walk out of the house when my sister leaves. Though I have given my brother fair warning that if my mom mentions that something else has gone missing, I will call out my sister on everything she has taken. In February, she took my dad's breakfast bowl. It had "Good Morning Luv" on it and he had used it for years. My daughter notice that he used a specific spoon too when she was little. My bother tried to give him cereal in a different bowl and he wouldn't eat it. I found one that is a similar shape and he would eat out of that.

Sorry this is long and rambling. Do you think that with how sick my mother had been, just asking for a quick text to say they were going to my brother's for a day or two was asking too much? This has happened before when she wasn't sick and her phone died and didn't have a charger with her. I tried calling her house at all different hours and got no answer, then tried her cell phone. I eventually texted my brother who said they were there. I felt that it because of how sick she has been, that I should have been told that they weren't going to home. I was told by my mom that she would call today and I never got a call. I asked her yesterday to just read the text messages that I sent her. I later added an apology for getting her upset. But I have been upset for two days about this whole ordeal. Mainly because I can't call my mom with out my sister hovering over her while she is talking to me.

I haven't read any other responses yet.

The reason you are not being involved is because you "visited" three times in two years and when you were there you caused disruption and resentment. Your role should've more been one of support.

You had no right to take your father off that medication! If you had questions about it you could've called the physician yourself. You could've harmed your father.

Try to understand that your mother is exhausted, and now physically ill (not surprisingly) and doing her best to take care of someone who cannot take care of himself, with your brother and sister's support. It is not an easy job day in and day out. They are in survival mode. You need to trust that they are working with a team who specializes in people with this disorder and is also looking out for the needs of his caregivers. End of story. (Unless of course you want to come up and care for him yourself full time. Maybe then you'd develop a better undestanding of things than you seem to have right now.)

 

[Pea-n-Me]

From Alzheimer's.org

Alzheimer's Association official position statement regarding the treatment of behavioral and psychiatric symptoms of Alzheimer's disease:

http://www.alz.org/national/documents/statements_antipsychotics.pdf

"Individuals living with dementia may experience behavioral and psychotic symptoms (BPSD) during the course of their disease due to the alteration in processing, integrating and retrieving new information that accompanies dementia. Studies have found that more than 90 percent of people with dementia develop at least one BPSD with a significant percentage of these individuals having serious clinical implications.

1. 
   
   
   • 
     Depression, hallucinations, delusions, aggression, agitation, wandering and “sundowning” are hallmark behavioral and psychotic symptoms of dementia, commonly manifested in moderate- to- severe stages of disease. These symptoms cause considerable caregiver stress, and frustration is often the breaking point prior to institutionalization in long-term care facilities. Many of these (BPSD) are also the impetus to falls, weight loss, infection and incontinence in individuals with dementia.
     
     Given the severity and frequency of these symptoms and lack of Food Drug Administration (FDA) approved drug treatment of BPSD, many classes of drugs (antipsychotics, antidepressants, anticonvulsants) have been utilized off-label to treat these distressing features of dementia. No drug class has been utilized as often for BPSD, and shown such benefit in short-term use, as antipsychotic drugs.
     
     Non-pharmacologic approaches should be tried as a first-line alternative to pharmacologic therapy for the treatment of BPSD."

 

[NMAmy]

Aargh, I've been in your brother and sister's shoes with a sibling far away second guessing every doctor's diagnosis and prescription and everything I did or said. Please, just stop or move closer and become part of the support system on a daily basis.

Caring for two parents with issues while trying to take care of your own family is overwhelming and exhausting on its own without having a sibling there to remark on every perceived "mistake." Alzheimer's patients can change behavior on a dime. Why in the world would your mother lie about your father being belligerent? Why in the world would you take it upon yourself to change your father's meds without discussing it with his physician? Why in the world would your sister "steal" a bowl and a spoon, and even if she did, why would you care? It seems like you are being so petty. I get that you're worried about your parents. But you need to come up with some ways to manage your worry without adding to your family's burden.

 

[Nancyg56]

I voted other. I will say that you really have no idea what daily life is while you are not there. Yes, you visited, but you do not handle the day to day issues, you think you know more than the dr's who have intimate knowledge of your parents, their medications, etc, and you criticize thos who have been managing your parents concerns and their health.

I would not tell you anything, to be honest, not after you withdrew a medication without consulting the DR. The ramifications could have been devastating, but you did worry about that.

I know you do not want to hear how out of line you are, but you really overstepped and you seem to be disruptive when you visit. I agree with teh above posters who suggest that your role should be to support your siblings. They are doing the best they can, and that is an overwhelming job. Unless you are willing to move there and do it yourself, you need to step away from evaluating all of their decisions.

 

[Mokat76]

OP, I know you're not seeing what you want to see in these responses, but their unanimity should tell you something. You cannot be far away and try to run the show. You cannot swoop in and alter things with little to no firsthand knowledge of what your nearby sibs see all the time. I get how frustrating it is, but back away.

Let me share my story from the perspective of the caregiver sibling. My mom was ill and no longer able to live independently. My sister and I, who lived near her, made the difficult decision to put her in a nursing home upon her release from the hospital. We saw the daily problems she had--incontinence, diminishing mobility (and refusal to use a walker), irrational behavior, increasing lack of lucid thought processes. My brother, who lived several states away, got frequent calls from her telling him how mean we were and how she was more than capable of living on her own but we wouldn't let her. She always seemed to pick her moments of clarity to call him. Then either my sister or I would get the angry "WTH are you doing to mom" calls. But he never came to visit. Finally I'd had enough and told him to either take a vacation to come see for himself what was going on or to clean out a room in his house because I'd be driving her there to live with him. That ended his Minday morning quarterbacking.

You have a tough row to hoe being far away. Your sibs have it far, far tougher. Give them a break, trust them to do what's right based on being there in the moment and stop burning bridges. That "theft" thing you threw out there is going to cause a permanent rift long after your parents are gone. Do you want that?

 

[ronandannette]

At a time when you are calm, please reread the posts above very carefully. You are likely experiencing various levels of fear, guilt and grief over the conditions of your parents and that's manifesting in angry, demanding, controlling ways - at least here in your OP. Try to gain a different perspective.

You truly have no idea how hard it is to be responsible for the on-going care of elderly, infirm parents. If you think you do, think again because you are not there - your siblings are. And I can promise you that your overbearing behaviour is causing them to avoid telling you things just to prevent having to "contend" with your opinions - they have enough on their plates. They may not be doing everything perfectly, or in hindsight making the exact right choice in every instance, but they are in the trenches.

IMO your Dad should be in a care facility, which would make looking after your Mom's needs way simpler. Having been through this situation I am thoroughly convinced that the elderly people in these scenarios don't understand how much support it is taking to keep them in their homes and how desperately hard they are making it on those that have to provide it. They are the furthest thing from independent and I personally will never put that weight on my own children's shoulders.

 

[NMAmy]

The rule:

My father has Azlheimer's and was diagnosed in 2013. 2014 was not too bad of a year. When I went to visit them, the first couple days he thought I was his sister. We finally got that straightened out and it was fine the rest of the visit. In 2015 my mom let me know that he was rapidly declining. I took my granddaughter out over the summer and he wasn't too bad, but no where near as good as the year before.

In December when we visited, he was worse. He seemed to be sleeping a lot during the day and just not really alert. I happen to find a list of his medicines and in February of 2015 he was put on a very strong anti-psychotic/anti depressant - Olanzaprine. When I checked this medicine and being prescribed for Alzheimer's patients, it said that it was a "Black Box Medication":

Antipsychotic medications for hallucinations, delusions, aggression, hostility and uncooperativeness
​

• • newer "atypical" agents such as aripiprazole (Abilify®); olanzapine (Zyprexa®); quetiapine (Seroquel®); risperidone (Risperdal®); and ziprasidone (Geoden®)
  • older first-generation drugs such as haloperidol (Haldol®)

The decision to use an antipsychotic drug needs to be considered with extreme caution. A recent analysis shows that atypical antipsychotics are associated with an increased risk of stroke and death in older adults with dementia. The FDA has asked manufacturers to include a “black box” warning about the risks and a reminder that they are not approved to treat dementia symptoms. The warning states: “Elderly patients with dementia-related psychosis treated with atypical antipsychotic drugs are at an increased risk of death compared to placebo.”
​

My sister was there when he was prescribed it. She said she didn't question it because of the things that my mom was saying he was doing. He was supposedly be belligerent and saying inappropriate things. My dad has never been a violent person, EVER. We don't know what he had been saying to her, but we also do not know what time period he was in either.

I felt he should be taken off the medication because it was causing his confusion and for him to sleep constantly. I also attributed his "rapid" decline to this medication.

Fast forward to the end of May and I get a text from my brother asking if I could come out the following week, that my mom is sick. I was on a plane the following week. The day after I arrived, she woke up in severe pain and we got her an appointment with her doctor. A friend took her to the appointment and then let me know that they were sending her to the ER. She stayed for awhile and then came home. I was able to get her husband to come sit with my dad. (Mom has used him to stay with dad quite often). The wife was a forever caregiver. I went to the ER to be with my mom. They gave her a prescription for pain and told her she had Diverticulitis. Within the first couple days, I took my dad off the olanzapine and within two days I could see a difference. My brother came up after I had mentioned taking him off this. When he arrived he was angry and asked if I had taken my dad to the doctor. I said that I hadn't but talked to him about it and he was willing to give it a try. My brother wasn't happy, but went along with it. After being around him for the rest of the Sunday and all of the Monday, he made a comment after dinner that he wasn't sleeping as much and was more alert. I said that this was the result of just 4 days off the med.

My mom was not getting better. Sometimes it was her diverticulitis and other times it would be a pain in her back and groin area. The physical therapist found that her hip was out of alignment. He got it back into place, but did not know how long it was out of alignment. Then near the end of the month when I said I would have to be going home, she was making herself sick with worry.

My mom had kept talking about how my sister had said she would be out on August 16 and at the time she was told this, she thought that was 6 months away and she could be in the hospital by then.

After I left, my niece came out for about a week near the end of July and then my sister arrived at the beginning of August instead of the 16th. One day when I called, my sister tells me "They are down for a nap! They take a 2 hour nap for about 1 to 3 or 3:30 depending on when they get down." She was very curt about it. Fine. I called a couple days later and now they are taking a nap from 2 to 4.

I tried calling another day and they were at a hearing appointment. Then I tried one morning about 8:30 and my mom said that was a good time as they were just finishing breakfast. She constantly tells me things about what happened to her while she was sick and I have to tell her that I was there for a month and know exactly what was going on with her. At the beginning of this week they went down to my brother's for Monday afternoon until Tuesday afternoon because they were having wood look tile placed in the hall. Any other time I would have not problem not being able to get a hold of her. But because she has been so sick and is just starting to get better, when I tried to call on Tuesday morning and could not get through on the house phone twice, I tried her cell phone, but it also just rang and then went to voice mail.

Yesterday I called to talk to her at 9 her time and they were just sitting down for breakfast. We ended up in an argument and she was upset. Plus she also must have had the phone on speaker because I could her my sister very clearly in the back ground and then the friend came up and said that my mom was getting up set. I was trying to tell my mom things and she kept interrupting me and so I had to raise my voice at times for her to hear me because she also did not have her hearing aids in, so then I was yelling at her. I couldn't even finish a sentence and she would interrupt me. I said that I was mad because both my sister and my brother had contacted hospice in January, but my dad was not eligible because he could still do things for himself. He has declined and with my mom being very sick, my sister contacted them at the end of July and they got over there fast and got it set up that someone comes in 3 days a week to bathe him and then they have Jeanne (the former caregiver) who comes over and makes breakfast for them most days.

I questioned both my sister and brother as to why I wasn't told about hospice while I was there. I could have gotten it in place before I left since my mom was still sick.

I was also mad that they do not admit that never once questioned the medications either of them are on. They just go along with what ever the doctor orders. My sister says some have certain regimes that they use. Sorry i don't buy that. He could have been put on a lot lower anti-depressant for his mood swings. But this is all moot as hospice has taken him off of everything.

I have been sending texts to both my sister and brother asking them questions about things regarding things that need to be done. My mom has a referral to see a neurologist and she hasn't made that appointment even though she has numbness in her leg from the knee down. It was originally the entire leg. Plus she has had numerous falls and I feel she need to have an MRI done. She will have to be sedated as she is very claustrophobic.

My brother told me that letting me know they had gone to his house was non issue because I knew that my sister was there. Plus that most of the other stuff I had sent them was just rambling and trying to find something to be mad about. I had asked him about her leg and got no response.

My mom said that she would call today and of course that did not happen. She says she hardly has her cell with her at all. But when I was there, she was constantly looking for it. Then she says that my brother told her she was in bed for two days and didn't get up to go the bathroom. I said if he was in the living room he would even know if she had gotten up. If she wasn't going to the bathroom that means he wasn't keeping her hydrated. I kept some type of drink at her bedside 24/7.

My mom thinks my brother is perfect and my sister is obviously running to him if I say something to her that she doesn't like or if I am accusing her of something (for good reason). My mom has let my sister steal things from her and won't take a stand against it. My brother says to just put it in the past and let it be.

Me, I am just the middle child who doesn't know anything and have no right to worry about my parents in any way. I am no longer trying to get my mom to put my dad in a home, because she has the help she needs. But that was thrown in my face as it is no longer up for discussion, PERIOD. I hadn't even brought since I left.

My mom lost over 40 lbs over 2 years, but she thinks she lost them in the last couple months. I keep having to remind her that she was 130 in December and she lost 10 lbs, almost 15 lbs while she was sick. The reason she lost the 40 lbs was because my sister had made up some meals and my mom was giving the bigger portion (2/3 for my dad and 1/3 for her).

I am stuck in Florida not knowing what is going on and what else might walk out of the house when my sister leaves. Though I have given my brother fair warning that if my mom mentions that something else has gone missing, I will call out my sister on everything she has taken. In February, she took my dad's breakfast bowl. It had "Good Morning Luv" on it and he had used it for years. My daughter notice that he used a specific spoon too when she was little. My bother tried to give him cereal in a different bowl and he wouldn't eat it. I found one that is a similar shape and he would eat out of that.

Sorry this is long and rambling. Do you think that with how sick my mother had been, just asking for a quick text to say they were going to my brother's for a day or two was asking too much? This has happened before when she wasn't sick and her phone died and didn't have a charger with her. I tried calling her house at all different hours and got no answer, then tried her cell phone. I eventually texted my brother who said they were there. I felt that it because of how sick she has been, that I should have been told that they weren't going to home. I was told by my mom that she would call today and I never got a call. I asked her yesterday to just read the text messages that I sent her. I later added an apology for getting her upset. But I have been upset for two days about this whole ordeal. Mainly because I can't call my mom with out my sister hovering over her while she is talking to me.

 

[donac]

I would expect a text. We went to DW in Oct and as we were walking into the park we got a text to call one of dh's sisters. His mother was in the hospital but that is all she knew since she wasn't there. The lousy texts we got over the next couple of day were awful and I felt bad for dh. She was okay but he had not idea and was worried sick.

On the other hand please don't second guess your brother and sister. They are there and you are not. It just the way life is. We have this in dh's family. He had a sister who lived with his mom and his sister from North Carolina questioned everything. We felt we should support the sister who lived with mom because she was with her every day.

 

[roliepolieoliefan]

I agree with all of the posters
You have no idea of the extent of care your parents need
You waltz in and try to take over
Including taking your dad off a medication because YOU don't think he needs it.
Do u have a medical degree?

Sorry but I would not include you either. You call your mom and upset her to the point she doesn't even want to talk to you and she's ill to boot , who does that?
Altzeimers patients are very trying . They can turn personality wise in a blink of an eye.
You can not visit a couple times a year and possibly know everything your mother and siblings have been through
I've been on their end and your behavior is unacceptable
You should be accepting and supportive not second guessing and putting the household in turmoil.

 

[firecracker725]

OP if you want to be involved in the decision making, take a leave of absence from your job and plan to stay a while. It is impossible to know what is going on from far away.

Second guessing the doctors when you are not directly involved is a dangerous move. I don't blame your siblings for leaving you out of the loop. They have far too much on their plates to deal with a difficult sibling at this time.

 

[powellrj]

Instead of making trouble for your brother and sister, you need to thank them for taking care of your parents when you haven't been there. When you are the care giver of a parent with dementia, you give up your own personal life. Your sister may have taken the bowl to use when your dad is at her house. You weren't there, you have no way of knowing what goes on.

I stayed with my parents when my mom was alive and she had dementia, my friends keep telling me I should write a book about all the crazy things that went on. The phone was a big thing that we dealt with. She would hide it and make phone calls to strangers when we were asleep. When she moved in with my brother and his family, she had a phone buddy that she would call thinking she was talking to me when it was actually a stranger who was kind and would talk to her. She would wander the neighborhood telling the neighbors at 4am that the man living at her house wasn't her husband. I could go on and on.

Send your brother and sister a big envelope of restaurant gift cards so they have a break from cooking meals along with a thank-you note and start visiting more often and staying longer.

 

[Gracie09]

If you want to be involved you need to move back and help take care of them. Since you can't/won't then you need to support their decisions and not make their life more difficult than it already is. In fact send them restaurant gift cards. Pay for a cleaning service a couple times a month. They are giving up much of their personal time and probably quite a bit of money to take care of your sick elderly parents. Appreciate the sacrifice they are making instead of judging them. And how dare you take your father off prescribed medication! You have no idea what it is like to live with him because you don't. People with Alztimers often change personalities and just because he wasn't violent before doesn't mean he isn't now.

 

[Gracie09]

And don't take what your mother tells you as gospel. Many elderly get confused especially when they are not in their own home. I doubt she went two days without drinking anything.

 

[PlutoPony]

My mother lived in an assisted living community that was just for people with memory issues - dementia and Alzheimer's. A good number of people became mean, abrupt, and to some extent violent as their disease progressed. It was so hard to watch this happen, and absolutely heartbreaking for the spouses who came to visit them. Most of the spouses I came to know agonized over the decision to no longer care for their loved ones at home but at a point it became virtually impossible and took a HUGE toll on their own physical and mental health. Based on what those experiences, I have a tremendous amount of empathy for your mother, brother, and sister dealing with your father. It's not the end of life that ANYONE wants for themselves or a loved one.

If you could go there for an extended visit, I think you'd come away with a better understanding of what life is like for your parents TODAY and maybe a clear view of how you can help them and their caregivers (your brother and sister or whoever). Try to attend a doc appt - maybe with both siblings too - so you are all on the same page. From your description of events, my guess is your idea of the current reality of your parents life differs from theirs.....and I suspect you may not realize how much your parents have changed as they have aged (especially your mother). I think you need to recognize and accept how they are TODAY, not the way you remember them being or how you want them to be. They have changed and not for the better. You can either embrace that and help them adjust or fight it as you are doing.

From experience - I'm an only child and lived 600 miles away from my aging and declining mom - I can tell you it's not possible to manage things from a distance. In the end you HAVE to have someone there on the ground you trust to do the best they can for your parent. At a point my mother and I decided it was time for her to move near me so I could take an active role in her life and care. I'm pleased we could spend her last years living close and I am confident that those years were spent the way she ultimately wanted.

I know these responses aren't what you wanted to hear and I'm sorry. But I think if you can take a fresh more objective look at the situation, you will see where the responses are coming from. Best of luck to you and your family.