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Sounds like your sister's done a reality check. And though your heart must be in your boots, in the long run it's probably for the best that she has.
Meanwhile, though, you're back to square one; and first of all let me send you a shoulder rub. Yes, you must be depressed. This is a blow.
Do not despair. There will be a way.
Hiring a caregiver is an expense that legitimately can be charged to your father. Can he afford it?
Moving your father to assisted living... If he won't consent, you would have to go through the process of having his cognitive impairment and therefore legal capacity assessed before you could enforce a move. Who, if anyone, has Power of Attorney for your father?
Worrying about what and whether he'll eat when he gets there is a bridge to be crossed when it's come to, and in any case not by you - handing over responsibility to an ALF means that kind of thing ceases to be your problem.
Meanwhile, from what I could gather of just this last post, your father's mental state is not something that you can cope with on your own. Get help!
You cannot be forced to live in your father's house with your father, caring for him full-time to the extent that you are unable to earn a living or live your own life. If he needs more support than you can provide by yourself, he will have to pay for it or, if his income and assets won't cover that cost, his living arrangements will have to be revisited and he will have to sell his house and move. Not a question of kicking him out for anyone's convenience: it's a matter of how he can afford to support himself, given that his living costs now include the cost of substantial assistance.
You've got a whole load of things to think about, and you're probably feeling overwhelmed. Your sister, if I may say so without p*ssing you off, sounds like a practical person when it comes to actual planning. Take the day to think about what you want to do *for yourself*. Then talk to her about dovetailing your own plans with options for your father's care.
If your father plays up and starts with the weirdness, call his doctor and ask someone to come and carry out an assessment at home. While you're at it, ask for their best advice on managing him. And look up Teepa Snow's videos if you haven't already.
I'm going to shut up now, God knows you must have too many thoughts running around in your head without my adding to them, sorry. But you have my heartfelt sympathy along with positive wishes. Your situation is really tough. Take courage! There is no problem that can't be sorted out one way or another. Keep posting, hugs to you.
I am so angry, my sister now says that he will only be moved if it is a medical necessity, that his health plan can't be transferred (I called them, that's correct) and that we will not kick him out of his house for our convenience. Our convenience? She said that she will move here if necessary. My being here is causing negative emotional impact, what do you think will happen if a 3rd person is living here? Can someone please help me try to understand her thinking? What about my life? Now, I'm stuck with not being able to leave the house to support myself, how am I supposed to live if I don't have any money? Hiring a caregiver all day will cost $200.00, $1,000.00 a week. He will not eat food that is not his restricted diet that he prepares himself, which means if I move him into assisted living he will not eat their food because they will not allow him to cook. Wow, this is such a shock, I was actually starting to be happy, now I am very depressed.
Glenda, I wish you the best of luck and hope you can make a fresh start once this nightmare is over.
But to be fair to your Dad and your sister and all her family, especially any little kids, when you hand him over make sure she has any information you can give her about how your Dad has been recently. And make sure you give her this website's address! I didn't see your earlier posts, just this one, but that's enough to think she'll need all the help and support she can get.
You've done your bit, seems fair to me that this time you let someone else do the heavy lifting. Best wishes to you.
glendalough, regarding your original post... some of us here seeing a post that has no paragraph breaks can make it difficult to read. I know it does for me. I can understand that some hand held computer/cell devices one has trouble created paragraph breaks. Double spacing may or may not work.
As for your Dad, has he been tested for a urinary tract infection? With elderly people, having a UTI can create all types of strange behaviors.
assandache7 Thank you. When our mom had a brain aneurysm in 2000 which left her unable to care for herself, I helped my dad take care of her until 2007 when she passed away. During those 7 years, my sister never offered any kind of help. Now she needs to step up which she is, she offered last year to have him move up but at that time he only had a small amount of mental impairment. I never wanted to remove him from his home but this is to prevent putting him in a place, he will hate it as he will be out of his comfort zone but I don't care, he will adapt. I will make sure he has all of his belongings that he needs. She lives in the mountains near Oregon which is really beautiful, I wish I could live up there. He will have access to a good medical care clinic that his medicare covers, unfortunately the nearest hospital that has ER is 4 hours away but they have air lift for that, the fresh air and stimulation from the people and grandkids (3 grown) and his 2 great grandkids (3 years old and 1 year old) will be good for him. He probably won't even realize he's away from me and there won't be a phone nearby for him to use. This will be a God send for my sanity and health.
Thank you all for your responses. To those that think I wrote to much, whatever, I don't care, you shouldn't have to follow rules as to how much you write, if that was an issue here, my posts would not have gotten approved. I have seen other sites where people have written more than I have.
I have set up caregiving which starts tomorrow. I ordered a Catscan to see if he might have had a stroke, it showed he hadn't. He is now on Quetiapine 25 mg. split morning and night. I was putting my stuff away in the kitchen yesterday and he said he was going to throw my junk away, he said I was pushing his stuff aside. I was on the phone with my sister after this happened to tell her what is happening with him and I had to go into a closed room as he was trying to listen to the conversation. When I came out he asked who I was talking to and why, I told him it wasn't his business, he asked me again and then he said that he was going to call the cops because of all of my junk. I can't deal with him anymore. He thinks I am trying to take over the house.
My sister lives 7 hours away by car and we have decided it is best for him to live with her and her family, she has grandkids, the place she lives at has a lot of people that can help him and give him what I am not willing to which is constant communication and to keep him engaged, I want to get away from him all the time.
He's anxious about your hardships but his mental state and inability to process your moving into his house is miserable for both of you. If he has resources get some good in-home or assisted-living care. If he doesn't have money maybe a Medicaid Community Waiver of some sort would help. I hope you have POA so you can address this with medical and financial people. If he lives long enough - say beyond private-pay/Assisted Living status to SNF status he must spend all resources toward his care, assuming he has no spouse to support. He needs help this year rather than 5 years down the road, so the 5 year rules won't be of any help in his situation. Think about keeping him safe and yourself sane. You can't reverse old age, mental decline, or the fact that he will perseverate or obsess on you. It sounds like he's already making you the focus of his remaining mental abilities.
Glenda Not sure of your family dynamics but if you've moved in with your father because you have money problems it is not good for either of you - depending on his age and health he could go on for years and you will not be able to leave him unattended for long walks and errands - his behavior is not unusual and my mom called the police too when I worked late - remember he is scared and doesn't understand why he doesn't know what's going on - he will become very clingy
a couple of starting points for you to consider : - Do you have siblings ? If so, are they nearby and can you all coordinate care which will include getting financial and healthcare power of attorney- these are important documents that you will absolutely need - who handles his money and bill paying now? - Do you live in a community where there is a senior center ? It can provide you with referrals and resources - Does your father have a doctor ? When was he there last? - Does your father still drive - doctor can assess and notify DMV if need be - if your father can afford a caregiver at home then try to get one through an agency for a few hours a day so that you can ge a break and start making plans - it takes awhile and you don't want to make matters worst for either of you
I know I wrote a lot. Your observations in the first paragraph are what I'm thinking is what is going on.
He was not like this before I moved in, he had some mental impairment, but all of these disturbing behaviors started after I moved in last saturday. I think that the move triggered something. I had no choice but to move back home, I couldn't get a job and have no money to pay rent. He is better today, he's not doing those behaviors.
I started to write several times but there is just so much to respond to. I got the impression he was thinking the poster was still a child and needed to do what she was told... what to eat, when to eat it, what to do. And when she went out he called the cops because he couldn't comprehend that she could look after herself. Mind you I didn't read every word so I could be wrong.
What IS obvious is that he is either seriously demented or mentally ill. How the OP got into this living arrangement without realizing the extent of his impairment is a mystery, but she needs to educate herself fast because you can't reason with it. Lindylu gives some good advice, I would second that he needs a diagnosis and AL, and that he use whatever assets he has to private pay as long as he can.
Now, I did read part of the posts-the one above. Can someone give Glenda immediate advice about techniques to deal with some of the behaviors? For example, I was struck by the idea that her Dad was maybe talking about himself-"so I won't soil my pants", but he maybe cannot say it right. Whenever he is at the bathroom door, take him into the bathroom, show him the toilet, state simply, go to the bathroom; or then to the sink, brush your teeth. (Still, leaving him in there with the door closed.) Think: When he says something, receive it as if he is saying "I want to do this", instead of he wants you to do this. When he says, "Come watch T.V.", take him to the t.v., make him comfortable, as he is getting settled, ask if he wants a snack, say I will bring it to you. You go, bring him the snack. Drop it off to him. Plan to be present again to change the channel when its over. It will be a good sign if he can be distracted by a t.v. show.
This may be a start to ease your mind-betting you did not expect this level of care and need. Feed him whenever he asks if you want to eat. I don't think he meant what he has said about you. If he is concerned you have wandered off, it may mean he has wandered off-talk to some neighbors. Just offering some ideas-not proven, but others may know what I am suggesting to get by until you can get help. when its over.
Hi Glendalough, it sounds like your dad is way too much for one person to handle. He has serious dementia and at this stage he needs more care than one person can provide.
First, do you have any support system? You need to be able to talk to someone. Lots of people use this forum to vent too, but sometimes it helps to hear another person's voice. The Alzheimer's Association has a 24 hour hotline. They were not that helpful when we called to ask about specific resources over the phone, but they were really kind and understanding and said they take calls from caregivers who have questions about Alzheimer's or just need to vent. Their number is 1 (800) 272-3900.
Second the five year spend down is just to qualify for Medicaid. You can move your dad to Assisted Living with memory care or a nursing home as long as he has funds to pay. Medicaid will not pay for Assisted Living, but your state may have a Medicaid waiver program if he needs it to pay for the assistance while he pays for room and board. If you are thinking of moving him, a lot of what is available just depends on his finances. Does he own or rent or live in your home? Does he have significant savings? Is he a veteran?
It is really, really hard to care for a person with dementia even when you love them very deeply and they have been an awesome parent or spouse. But when you have a dysfunctional relationship with the person it adds an extra layer of difficulty. Your dad will drive you nuts, and will exhaust you. It sounds like he made a decision to give very little effort to being a dad. The fact that you are looking out for his well-being is more than what you owe him. It is possible to find other means of care for him and maybe it is better just to help him manage his care and check on him without being his full-time caregiver.
My grandpa is probably about at your dad's level of dementia. When he was living at home, EVERY time he was left alone he started finding trouble. He also "shadowed" my mom, especially in the evening. He is now in a nursing care. At this stage you need round the care help for him.
I'm amazed that anyone else had the patience to wade through all of that and give you relevant replies, sorry but I couldn't. If you want help, either from us or from an agency or from his doctors or whoever, you need to be able to get to the point quickly and succinctly or you risk losing your audience. Print out all that for your journal, then cut it down to a couple of paragraphs.... What is happening TODAY, and what have you tried so far to mitigate it?
Then, he started following me around and standing by the bathroom when I’m brushing my teeth waiting for me to finish and then go to bed, then he goes into the other room and sits until he goes to bed. He keeps pressuring me to watch tv with him, he’ll come to my room and say it’s time to watch tv, I argue with him that I’m not going, then he comes back says he’ll come back in a few minutes to get me in which I have to argue with him again. A few days ago I was sitting watching television with him and he asked me when I was going to go to the bathroom, I was shocked and asked him why he was asking that, he said so that I don’t soil my pants. This upset me because I felt it was inappropriate. I told him that I am not a child, he said you are my child, I said he had no right to ask me that and it made me very uncomfortable. He did not apologize but instead muttered a “hmm” sound. But the most disturbing things started happening 2 days ago. He was on the couch, it was around 9:00 a.m., I told him to his face that I was going for a walk, he asked me if I had my jacket, I told him it was too warm and that I would be back in a little while. I got home around 10:45 a.m., walked in the front door and he said “the police are looking for you”. I couldn’t believe what I was hearing, I asked him what he meant, he said that he couldn’t find me in the house so he told them I was missing. He called 911. I was angry and told him that he had to call them back, he called them said they want to talk to me, the lady officer told me they came to the house, she said he told them that he was upset I didn’t eat my breakfast, that there were random people moving in and that I was missing. I told her that I told him where I was going and that he has dementia, she said she would flag his name for any future calls. I asked him about the random people and he said there were 3 people bringing things in. I told him those were the movers moving my things in and there were only 2 of them. Throughout the day he continued to try to feed me and get me to watch tv. Yesterday I had to run some errands, I wrote him a note that I would be gone a little while and to not call the police I am not missing, I showed him the note, he read it outloud and that he wouldn’t call them again. I get home and get a voicemail from the same lady officer that he called them again, this time complaining about the packages and that I wandered off. I called her back asking what exactly he said and she said he told her about the packages being delivered and that I have mental changes and wandered off. I apologized, told her that I wrote him a note but that he isn’t understanding the words and I am looking into a caregiver. I got very, very angry and screamed at him. Later I asked him what packages he was talking about, he pointed to the living room and I said those are my things, I moved them in here and that I don’t have mental changes or wandered off. I asked him to explain why he thinks that is and he could only say “that’s what it looks like”. I told him that he has no right to call the cops, that I was out doing errands, I didn’t wander off, I left on my own, then he says “well they found you” and then I argued with him that I have no contact with them, they don’t know me or any where I go and he continued to say they found you. I did watch some television with him, I told him that tomorrow I have to run an errand and are you going to call the police when you don’t see me, he said no, I tell him that by calling the cops every time I leave the house you are preventing me from living my life, I am a prisoner here, are you expecting me to spend every minute with you, I am adult and I can come and go as I please, you do not have the right to prevent that, he said no he won’t do it again, but I know he will, I told him that I might have to put him in a home which he didn’t like. Then last night I was in the bathroom and he tried to talk to me a few feet away telling me that he was going outside to sweep around the house, I told him ok, but he still stayed there talking to me about how he is going to sweep and then we can watch tv. Again, all day and night he tries to get me to eat and follows me around. He gets up at 6:00 a.m. and I always have my door closed. This morning he knocks on my bedroom door after he gets up then opens it without my saying he could do so, I yell to close it, then he opens it again without knocking, I tell him it’s inappropriate what he is doing, he doesn’t have permission to do that. Then he kept pestering me to eat breakfast again having to argue with him. I don’t know what to do, I read that if you put someone in assisted living or a nursing home you have to prepare 5 years in advance and you have to transfer the house to someone and spend down their money. I don’t have 5 years and has a lot of money to spend down.
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APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
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Meanwhile, though, you're back to square one; and first of all let me send you a shoulder rub. Yes, you must be depressed. This is a blow.
Do not despair. There will be a way.
Hiring a caregiver is an expense that legitimately can be charged to your father. Can he afford it?
Moving your father to assisted living... If he won't consent, you would have to go through the process of having his cognitive impairment and therefore legal capacity assessed before you could enforce a move. Who, if anyone, has Power of Attorney for your father?
Worrying about what and whether he'll eat when he gets there is a bridge to be crossed when it's come to, and in any case not by you - handing over responsibility to an ALF means that kind of thing ceases to be your problem.
Meanwhile, from what I could gather of just this last post, your father's mental state is not something that you can cope with on your own. Get help!
You cannot be forced to live in your father's house with your father, caring for him full-time to the extent that you are unable to earn a living or live your own life. If he needs more support than you can provide by yourself, he will have to pay for it or, if his income and assets won't cover that cost, his living arrangements will have to be revisited and he will have to sell his house and move. Not a question of kicking him out for anyone's convenience: it's a matter of how he can afford to support himself, given that his living costs now include the cost of substantial assistance.
You've got a whole load of things to think about, and you're probably feeling overwhelmed. Your sister, if I may say so without p*ssing you off, sounds like a practical person when it comes to actual planning. Take the day to think about what you want to do *for yourself*. Then talk to her about dovetailing your own plans with options for your father's care.
If your father plays up and starts with the weirdness, call his doctor and ask someone to come and carry out an assessment at home. While you're at it, ask for their best advice on managing him. And look up Teepa Snow's videos if you haven't already.
I'm going to shut up now, God knows you must have too many thoughts running around in your head without my adding to them, sorry. But you have my heartfelt sympathy along with positive wishes. Your situation is really tough. Take courage! There is no problem that can't be sorted out one way or another. Keep posting, hugs to you.
But to be fair to your Dad and your sister and all her family, especially any little kids, when you hand him over make sure she has any information you can give her about how your Dad has been recently. And make sure you give her this website's address! I didn't see your earlier posts, just this one, but that's enough to think she'll need all the help and support she can get.
You've done your bit, seems fair to me that this time you let someone else do the heavy lifting. Best wishes to you.
As for your Dad, has he been tested for a urinary tract infection? With elderly people, having a UTI can create all types of strange behaviors.
Thank you. When our mom had a brain aneurysm in 2000 which left her unable to care for herself, I helped my dad take care of her until 2007 when she passed away. During those 7 years, my sister never offered any kind of help. Now she needs to step up which she is, she offered last year to have him move up but at that time he only had a small amount of mental impairment. I never wanted to remove him from his home but this is to prevent putting him in a place, he will hate it as he will be out of his comfort zone but I don't care, he will adapt. I will make sure he has all of his belongings that he needs. She lives in the mountains near Oregon which is really beautiful, I wish I could live up there. He will have access to a good medical care clinic that his medicare covers, unfortunately the nearest hospital that has ER is 4 hours away but they have air lift for that, the fresh air and stimulation from the people and grandkids (3 grown) and his 2 great grandkids (3 years old and 1 year old) will be good for him. He probably won't even realize he's away from me and there won't be a phone nearby for him to use. This will be a God send for my sanity and health.
I have set up caregiving which starts tomorrow. I ordered a Catscan to see if he might have had a stroke, it showed he hadn't. He is now on Quetiapine 25 mg. split morning and night. I was putting my stuff away in the kitchen yesterday and he said he was going to throw my junk away, he said I was pushing his stuff aside. I was on the phone with my sister after this happened to tell her what is happening with him and I had to go into a closed room as he was trying to listen to the conversation. When I came out he asked who I was talking to and why, I told him it wasn't his business, he asked me again and then he said that he was going to call the cops because of all of my junk. I can't deal with him anymore. He thinks I am trying to take over the house.
My sister lives 7 hours away by car and we have decided it is best for him to live with her and her family, she has grandkids, the place she lives at has a lot of people that can help him and give him what I am not willing to which is constant communication and to keep him engaged, I want to get away from him all the time.
Not sure of your family dynamics but if you've moved in with your father because you have money problems it is not good for either of you - depending on his age and health he could go on for years and you will not be able to leave him unattended for long walks and errands - his behavior is not unusual and my mom called the police too when I worked late - remember he is scared and doesn't understand why he doesn't know what's going on - he will become very clingy
a couple of starting points for you to consider :
- Do you have siblings ? If so, are they nearby and can you all coordinate care which will include getting financial and healthcare power of attorney- these are important documents that you will absolutely need - who handles his money and bill paying now?
- Do you live in a community where there is a senior center ? It can provide you with referrals and resources
- Does your father have a doctor ? When was he there last?
- Does your father still drive - doctor can assess and notify DMV if need be
- if your father can afford a caregiver at home then try to get one through an agency for a few hours a day so that you can ge a break and start making plans - it takes awhile and you don't want to make matters worst for either of you
I know I wrote a lot. Your observations in the first paragraph are what I'm thinking is what is going on.
He was not like this before I moved in, he had some mental impairment, but all of these disturbing behaviors started after I moved in last saturday. I think that the move triggered something. I had no choice but to move back home, I couldn't get a job and have no money to pay rent. He is better today, he's not doing those behaviors.
I got the impression he was thinking the poster was still a child and needed to do what she was told... what to eat, when to eat it, what to do. And when she went out he called the cops because he couldn't comprehend that she could look after herself. Mind you I didn't read every word so I could be wrong.
What IS obvious is that he is either seriously demented or mentally ill. How the OP got into this living arrangement without realizing the extent of his impairment is a mystery, but she needs to educate herself fast because you can't reason with it.
Lindylu gives some good advice, I would second that he needs a diagnosis and AL, and that he use whatever assets he has to private pay as long as he can.
Can someone give Glenda immediate advice about techniques to deal with some of the behaviors? For example, I was struck by the idea that her Dad was maybe talking about himself-"so I won't soil my pants", but he maybe cannot say it right.
Whenever he is at the bathroom door, take him into the bathroom, show him the toilet, state simply, go to the bathroom; or then to the sink, brush your teeth. (Still, leaving him in there with the door closed.)
Think: When he says something, receive it as if he is saying "I want to do this", instead of he wants you to do this.
When he says, "Come watch T.V.", take him to the t.v., make him comfortable, as he is getting settled, ask if he wants a snack, say I will bring it to you. You go, bring him the snack. Drop it off to him. Plan to be present again to change the channel when its over. It will be a good sign if he can be distracted by a t.v. show.
This may be a start to ease your mind-betting you did not expect this level of care and need. Feed him whenever he asks if you want to eat. I don't think he meant what he has said about you. If he is concerned you have wandered off, it may mean he has wandered off-talk to some neighbors.
Just offering some ideas-not proven, but others may know what I am suggesting to get by until you can get help.
when its over.
First, do you have any support system? You need to be able to talk to someone. Lots of people use this forum to vent too, but sometimes it helps to hear another person's voice. The Alzheimer's Association has a 24 hour hotline. They were not that helpful when we called to ask about specific resources over the phone, but they were really kind and understanding and said they take calls from caregivers who have questions about Alzheimer's or just need to vent. Their number is 1 (800) 272-3900.
Second the five year spend down is just to qualify for Medicaid. You can move your dad to Assisted Living with memory care or a nursing home as long as he has funds to pay. Medicaid will not pay for Assisted Living, but your state may have a Medicaid waiver program if he needs it to pay for the assistance while he pays for room and board. If you are thinking of moving him, a lot of what is available just depends on his finances. Does he own or rent or live in your home? Does he have significant savings? Is he a veteran?
It is really, really hard to care for a person with dementia even when you love them very deeply and they have been an awesome parent or spouse. But when you have a dysfunctional relationship with the person it adds an extra layer of difficulty. Your dad will drive you nuts, and will exhaust you. It sounds like he made a decision to give very little effort to being a dad. The fact that you are looking out for his well-being is more than what you owe him. It is possible to find other means of care for him and maybe it is better just to help him manage his care and check on him without being his full-time caregiver.
My grandpa is probably about at your dad's level of dementia. When he was living at home, EVERY time he was left alone he started finding trouble. He also "shadowed" my mom, especially in the evening. He is now in a nursing care. At this stage you need round the care help for him.
Sorry, but I didn't read a word of it!
If you want help, either from us or from an agency or from his doctors or whoever, you need to be able to get to the point quickly and succinctly or you risk losing your audience. Print out all that for your journal, then cut it down to a couple of paragraphs.... What is happening TODAY, and what have you tried so far to mitigate it?