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She won't let me see him. I was able to take him home with me for a few hours just to get away from there. Now she won't let me nor her son see him at all since she's got a POA. What are our options?
Your options are to come to grips with your brother's need to accept where he is. If a visitor upsets a patient and gets him worked up, the facility will notify the POA and the POA has an obligation to ban visitors who are bad for the patient. Taking them back to a home is a big NO NO, it makes him angry and obsessed with getting out of there. Go to alz.org for tips on how to deal with it.
Worried, it sounds to me as if the worst thing your SIL has done is to be so impatient with you and with her son. I suspect that if she'd made more effort to explain her thinking to both of you, the situation would be easier to accept.
But here's the thing. I doubt if she's got much mental space or energy left to have patience with other people. I should think she is about as miserable as you could wish her to be. I don't suppose for a second that she is happy that her husband is in an ALF, happy that he's ill, happy that she appears to have 'left' him - like any cliché who's got bored and left her husband. And on top of that she's got a SIL who, with the best of intentions, "springs" him from ALF and presumably a son who is equally upset about his dad being "in prison."
This lady is likely having the hardest time of her life and feeling terrible about it. What's happening to your brother is tragic, but if you really want to help him then reach out to your SIL and hold her hand. After you've followed PamS's advice, that is, and read up on what living with a man with progressing Alzheimer's is like.
I am wife of 49 years of a husband with Parkinsons, dementia, Lewy Bodies, CHD etc
10 years ago my husband had a heart attack with 2 bypasses I took total care of him thru that recovery with NO help, or offer of help from his sister...
since then, he developed the above illnesses. 2 times in the 7 years she came to our home and was with him a few hours. that stopped.
her only involvement with him was to meet us for lunch about 1 time every 2 months. she was too busy with her own life.
then, after being home with him for 3 years straight, never leaving him for more than a few hours in the day, I received 'respite' from hospice. she said she would look in on him at the facility since it was just 8 miles from her house
my first day visiting my children 1000 miles away, she called saying how horrible the place where he was was. she went on to say, "i would rather have him at my house" so I said, ok I will call the facility and tell them you are going to take him home. well, she backed down and did not want him at her home. so he remained there the 5 days of respite. (it is ok for me to live 24/7 for years but not her for a few days) she had me so upset while I was at my kids house I was in tears. I told her that I NEEDED the time away and if I didn't get it I would not go back. it was awful. it took me a long time to regain my composure and enjoy my precious few hours with my grandchildren.
early July I asked her to take him for a few hours, when I picked him up she said he was fine and they could converse and she didn't see any problem... so yes, she is in denial.
did I mention, I have lived with bowel problems and urinary incontence, for a long time ---
I could not leave him for a moment. had to hire a caregiver to be with him if I wanted to go out anywhere.
if it were not for hospice I don't know what I would do.
finally, our kids saw his rapid decline and said I need help.
I have been forced, for my sanity, to put him in assisted living. his sister does NOT know. I will not tell her until I know he is settled into the facility. of course, he want to go home and it is not an option. it does not mean I don't love him, it means I am taking care of him by getting experienced people to help him. it is with great financial drain, takes ALL our income. so, I am forced to change my life also. it is devastating, and I wish I had my 'real' husband - but I don't.
I wish his sister could be my comfort, but she is not. so I am alone in this nitemare - our kids live 1000 miles away.
God is with me and He is my comfort.
so, relatives out there, stop judging and HELP. as the person above said, it is the toughest decision I have ever had to make.
Your post eludes to a potential divorce because of his condition, but then says that she is POA. I wonder if you or his son are aware of the day to day struggles that are part of his condition? The previous responses are very compassionate but I am sure are very hard to hear. A few questions to ask yourself are: Have you been actively involved in caring for your brother? Have you been to recent doctors appointments with him? Are you in anyway involved on his day to day life or are you going to visit when he calls you and is having a good day? Do you know the level of his impairment? I would imagine that if you where involved in the day to day you might have a different perspective. I would speculate that your SIL made this decision with the support of professionals. I wonder if brother feels abandoned and does not recognize that magnitude of his impairment. Does most of your information come from your brother or other family members? How much has come from his wife? If you can say that you have been actively involved in every step of the process and know that your brother does not need the level of care he is in then maybe you could offer support to your SIL so she is not feeling overwhelmed and his son can be part of the solution. It is easy to make assumptions from a distance. Open your heart to what she might be experiencing and talk with her and become part of the situation and then see if you have the same perspective.
I have been taking care of my 83 year old mother who has lung cancer and 6 weeks ago broke her hip...she is bedridden..I'm the only caregiver 24/7..We live out of state from other family..I have no siblings..This is the toughest job I ever had..Family members have come to visit for a few hours and pass judgement on me as the caregiver..while they are here afew hours to talk and visit with her not give care...She is in hospice..Her nurse and the chaplain have told me what good care I have been giving her and to not let anybody take that from me..so don't judge a caregiver based on what time you spend visiting your loved one..I am alert 24/7..never really sleep..just rest...on top of that my mom whines about stupid things..like I didn't get her everything on her list...my son wanted her list so he could get her things..When I get a chance to leave it is only to go to the store for groceries..my boyfriend stays with her but I have to go and get right back because he isnt a caregiver...than I look bad because I forgot things on her list..If you haven't had this kind of responsility you better thank that person who has taken care of your loved one..plus a little fyi if you r talking to a caregiver if a loved one after you ask how your lovedd one is doing take a minute to ask "how are you doing?" I have one person that asks me that..I'm the onebwho isvwatching my mom die and who tries to find a place to cry do my mom or my boyfriend knows I'm crying...This isn't a good position to be in so be thankful to those caregivers..Trust me they are living through their own hell..plus I lost my husband of 34 years to lung cancer 2 years this month..Do I'm reliving that horrible event...
ok so I messed up a few things in post hope u all know what I mean...I meant I cry where my mom and boyfriend doesn't know I cry..Don't want to upset them...I reply to these comments on my phone..keyboard not big enough...lol...hope everyone has a good day.....Thank you for hug moondance....my boyfriend just asked me at breakfast..What do u need? I said I could use a hug...he isn't a hugger...but I got one from you..so thank you....
First of all, that visit may have triggered a lot of negative behaviors once he returned to the assisted living facility. She has all the power, and you will have to be very nice to her to see your brother. Sorry, that's the way it is unless you have tons of money to fight her in court.
Agree with all of above. When you haven't been around on a 24/7 basis during the last - say 7 years - and unless you are willing to take the patient into your own home and stay with him 24/7 providing all care yourself - Then instead of undermining your SIL - you need to support her. If brother is in AL facility and you take him out and then decide it's too much for you and take him back - it will be starting over from square one for him to get used to facility.
Why does it always seem to be the ones who do the least are the first to complain about what others are/or are not doing. These same people are the first in line trying to get "their share" of what's left when relation passes.
You have no options. His wife is his POA & probably his health care proxy----you're not. Perhaps if you stated what you want or what the problem is, you'd get more useful advice. Your brother has Alzheimer's disease. His wife probably can't take care of him at home anymore & he needs more care than she can do. Don't put your nose where it doesn't belong. Go visit your brother, spend some time with him & don't tell him how horrible you think assisted living is. He is much better off in assisted living where he is able to get help than being by himself where he could get seriously injured or do something like leave the stove on & burn the house down.
Ask for an ombudsman. Look it up in your local telephone book. In the USA your brother is entitled to an ombudsman.
This may be the only way that your sister can get medicaid for your brother. Many government officials are telling spouses that if they want medicaid they must divorce.
Medical experts recommend that family ;members not take care of patients with Alzheimer's. Eventually at some time in the disease the patient cannot be left on their own. That includes during sleep time. Many times they will get up during sleep. Problems like fires, getting out of the house and roaming etc. happens.
Worried Sick, if you were actually "Worried Sick" than you would have been involved in your brother's needs long before this. He didn't get Alzheimer's overnight.
You also did what I call an Enquirer Headline. You made it sound like your SIL just kicked your brother out of the car(while it was still moving right) at an AL and she is "in the wind", after of course draining the bank account and running off with a 25yr old guy.
Let's get real, shall we? Your SIL did the best she could with no help from you and most likely no other family either. Before she dropped dead from the stress of caring for her husband she had to make the tough choice to put him in an AL.
Now you're "worried sick", again I ask where were you before this?
Several years ago "20/20" did a great segment on caregiving. A man in was taking care of his wife with Alzheimers on his own. For one week her sister and husband took her, well the two of them were EXHUASTED at week's end. Had no idea what the husband was doing on HIS OWN.
I would like to give a BIG HUG to all of you taking care of loved ones without the emotional support of family members. It is so hard to get them on board. I also did not realized how time/energy consuming giving could be until I did it. Love to you all.
The original post title is misleading. It implies the SIL left when it is apparent she is still there and involved in her husband's care in AL. I have a feeling that what happened is the husband talked about how bad it was, and how his wife had just dumped him at the terrible facility. For those of us who know the truths behind the confabulations that go with dementia, we can understand how easily people can be fooled. Get on board with your SIL, WorriedSick, so your brother can have a coherent family there with him. I can tell your SIL is still in the picture or she wouldn't have intervened so quickly. Leaving the facility, particularly to return home, can be very upsetting for someone who only wants his life to be like it used to be. It is a reminder of things lost. If he isn't ready to deal with these emotions, it can create upset that the people at the AL have to work through. Visiting him at the AL and accepting his new limitations would be much better. And take any "Ain't it awful?" scenarios with a grain of doubt, without either arguing or confirming. Just listen. You can ask the AL or SIL about them later if you need to.
I too know the pain of watching a loved one suffer from the evils of dementia. In my case, it is my mother. My dad is her primary caregiver and it is so hard to watch him go thru such emotional turmoil. My siblings have been wonderful and helpful and we all do as much as we possibly can with most of us living in different states. I have nothing to add to the heartfelt comments above other than to open your hearts to anyone touched by this awful disease, from the one affected to any caregiver who ever they may be. I come to this site often and usually walk away with some helpful information. I hope that Worried Sick finds support too.
Thought I do not really know what has transpired. If I was in the condition that your brother appears to be in... I think I would want my wife to do much the same. There is nothing worse than watching someone you love finish out their life that way and at the same time feeling the trap of your own life passing un-enjoyed at the same time... it seems endless.
Your only option, I think, is to make peace with your SIL. To listen to the reasons she has banned you from visiting. To find out from SIL what you could do to be able to visit your brother again. And then, if you get permission, to follow those conditions without exception.
You need to learn about the condition your brother has. If you are not willing to do a little reading and research, please don't bother trying to visit him.
If you do not get permission, you could send cheery notes and cards. Enclose cartoons or crosswords or anything you think he would enjoy. Do NOT bring up sensitive issues. Do not reference the visiting ban. The notes are just an indication that you love him. If you write anything that upsets him you may be prohibited from writing to him, also.
Worried Sick, I would say from my own experience that you have no options. I would imagine that your sister in law probably gave you options to help her while she was caring for your brother, if you and her son had stepped up then you would already know your options.
Placing someone that you care about in a NH or Assisted Living is hard enough for a long term caregiver to do - and then to have "family" undermine that difficult decision - it is just wrong. I will tell you what I should be able to say to my stepdaughters, shame on you. Not being on board with your sister in law is harmful to all involved - especially your brother. I know that it is difficult to accept his illness and that you feel badly that he is in such place but your denial and misinterpretation only makes things worse.
As others have mentioned here, no matter what you did or did not do in the past, offer to help. Be kind. Give your sister in law a gift certificate, send her on a cruise and offer to treat her to something that will renew her health and her spirit. Thank her for all the years of care she gave to your brother and then maybe, just maybe she might consider opening her heart to you. Taking your brother for a few hours is a drop in a big, big bucket of the needs of your sister in law and brother. Instead of taking him for a few hours, offer to help her. Ask her what she needs. She is your family too...
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
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.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
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You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Taking them back to a home is a big NO NO, it makes him angry and obsessed with getting out of there. Go to alz.org for tips on how to deal with it.
But here's the thing. I doubt if she's got much mental space or energy left to have patience with other people. I should think she is about as miserable as you could wish her to be. I don't suppose for a second that she is happy that her husband is in an ALF, happy that he's ill, happy that she appears to have 'left' him - like any cliché who's got bored and left her husband. And on top of that she's got a SIL who, with the best of intentions, "springs" him from ALF and presumably a son who is equally upset about his dad being "in prison."
This lady is likely having the hardest time of her life and feeling terrible about it. What's happening to your brother is tragic, but if you really want to help him then reach out to your SIL and hold her hand. After you've followed PamS's advice, that is, and read up on what living with a man with progressing Alzheimer's is like.
I am wife of 49 years of a husband with Parkinsons, dementia, Lewy Bodies, CHD etc
10 years ago my husband had a heart attack with 2 bypasses
I took total care of him thru that recovery with NO help, or offer of help from his sister...
since then, he developed the above illnesses. 2 times in the 7 years she came to our home and was with him a few hours. that stopped.
her only involvement with him was to meet us for lunch about 1 time every 2 months. she was too busy with her own life.
then, after being home with him for 3 years straight, never leaving him for more than a few hours in the day, I received 'respite' from hospice. she said she would look in on him at the facility since it was just 8 miles from her house
my first day visiting my children 1000 miles away, she called saying how horrible the place where he was was.
she went on to say, "i would rather have him at my house" so I said, ok I will call the facility and tell them you are going to take him home.
well, she backed down and did not want him at her home. so he remained there the 5 days of respite. (it is ok for me to live 24/7 for years but not her for a few days)
she had me so upset while I was at my kids house I was in tears.
I told her that I NEEDED the time away and if I didn't get it I would not go back.
it was awful. it took me a long time to regain my composure and enjoy my precious few hours with my grandchildren.
early July I asked her to take him for a few hours, when I picked him up she said he was fine and they could converse and she didn't see any problem...
so yes, she is in denial.
did I mention, I have lived with bowel problems and urinary incontence, for a long time ---
I could not leave him for a moment. had to hire a caregiver to be with him if I wanted to go out anywhere.
if it were not for hospice I don't know what I would do.
finally, our kids saw his rapid decline and said I need help.
I have been forced, for my sanity, to put him in assisted living.
his sister does NOT know. I will not tell her until I know he is settled into the facility. of course, he want to go home and it is not an option.
it does not mean I don't love him, it means I am taking care of him by getting experienced people to help him.
it is with great financial drain, takes ALL our income.
so, I am forced to change my life also.
it is devastating, and I wish I had my 'real' husband - but I don't.
I wish his sister could be my comfort, but she is not. so I am alone in this nitemare - our kids live 1000 miles away.
God is with me and He is my comfort.
so, relatives out there, stop judging and HELP.
as the person above said, it is the toughest decision I have ever had to make.
good day.....Thank you for hug moondance....my boyfriend just asked me at breakfast..What do u need? I said I could use a hug...he isn't a hugger...but I got one from you..so thank you....
Then instead of undermining your SIL - you need to support her. If brother is in AL facility and you take him out and then decide it's too much for you and take him back - it will be starting over from square one for him to get used to facility.
Why does it always seem to be the ones who do the least are the first to complain about what others are/or are not doing. These same people are the
first in line trying to get "their share" of what's left when relation passes.
This may be the only way that your sister can get medicaid for your brother. Many government officials are telling spouses that if they want medicaid they must divorce.
You also did what I call an Enquirer Headline. You made it sound like your SIL just kicked your brother out of the car(while it was still moving right) at an AL and she is "in the wind", after of course draining the bank account and running off with a 25yr old guy.
Let's get real, shall we? Your SIL did the best she could with no help from you and most likely no other family either. Before she dropped dead from the stress of caring for her husband she had to make the tough choice to put him in an AL.
Now you're "worried sick", again I ask where were you before this?
Several years ago "20/20" did a great segment on caregiving. A man in was taking care of his wife with Alzheimers on his own. For one week her sister and husband took her, well the two of them were EXHUASTED at week's end. Had no idea what the husband was doing on HIS OWN.
Sound familiar?????
You need to learn about the condition your brother has. If you are not willing to do a little reading and research, please don't bother trying to visit him.
If you do not get permission, you could send cheery notes and cards. Enclose cartoons or crosswords or anything you think he would enjoy. Do NOT bring up sensitive issues. Do not reference the visiting ban. The notes are just an indication that you love him. If you write anything that upsets him you may be prohibited from writing to him, also.
Placing someone that you care about in a NH or Assisted Living is hard enough for a long term caregiver to do - and then to have "family" undermine that difficult decision - it is just wrong. I will tell you what I should be able to say to my stepdaughters, shame on you. Not being on board with your sister in law is harmful to all involved - especially your brother. I know that it is difficult to accept his illness and that you feel badly that he is in such place but your denial and misinterpretation only makes things worse.