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I need ten days to see my grandson in another city and my partner is refusing to go to a respite program. He cannot stay alone but insists he can, even though the doctor told him he could not. He doesn't remember even seeing the doctor.
CarolButts- Your biggest challenge is physically getting him into the car and into the care setting, and then getting yourself back out with a minimum of distress to both of you. Don't tell him it's respite care. Think about his areas of interest and tell him it's something along the lines of his interests. Was he a workaholic? Tell him you found a temporary job for him but it's in another city so he'll have to stay in the employer's accommodations. Was he a golfer? Tell him it's a golf resort. Did he enjoy school? Tell him it's an exchange program. Was he into volunteering? Tell him this program needs his help. Did he like to travel? Tell him it's a luxury hotel in an exotic destination, with outstanding room service....He could even be on a cruise - the surroundings do not have to match the story, depending on how advanced his dementia is. Whatever you need to do to get him there without a fuss, for his emotional well-being and comfort in going there, so it at least starts with as little trauma as possible for him, and for you. You do need POA to have the authority to have him admitted somewhere without his awareness of its true nature, and for them to keep him there if he starts to want to leave. Tell the staff your "story", and suggest ways they can go along with it. (They do this sort of thing all the time. I talked with a woman once whose aunt was as happy as a clam in a nursing home because she believed it was a luxury hotel with great "room service", and the "maids" were so nice to her and waited on her hand and foot. Her mother, on the other hand, was told she was going to a nursing home, and she was so miserable, she had to take her back home.) Once he's there, he might not even remember your ruse. If he does, the staff will do their best to support your story and distract him and keep him occupied ("oh, the class/ work/ tournament/ tour... starts tomorrow, hey, look, your breakfast is ready.....").
I know it's lying, and it really felt terrible to me when I had to start doing this sort of thing with my mom, but she is not dealing with reality (or truth) anyway, and it just makes life easier for both of us. For example, she thinks her parents are still alive and daily wants to go home to them. I used to try to tell her the truth, and tell her how old they would be if they were still alive, etc..(they would be 130 and 140 years old), but that doesn't fase her, all logic and reasoning like an adult is gone. She would either get furious and tell me I was wrong, she just saw them yesterday, etc... or she would believe me and would be crushed with horrendous grief and cry gut-wrenching sobs as if they just died today. And It was agonizing for me, watching her grieve this way every day, it was really just so cruel. Her parents loved to travel, and often went down to Mexico on long driving trips, so I started telling her they were on a long trip to Mexico again. If she still wanted to go to their house, I told her they had everything turned off because they knew they would be gone a long time, so it would not be safe or pleasant to go there with no light, heat, water, phone, no food in the fridge, etc. This really worked. She was able to accept that story, and she would be disappointed, but she could be happy knowing they were having a good time. She would ask again a while later, and I would have to tell her the same story again many times, but at least there was not the stress and agony for both of us of trying to tell her the truth all over again. The only problem is, after months of this solution, my mom cleverly thought of a way around it: "I'm not talking about THOSE parents, I want to go see my OTHER parents!" She just invented a whole new set of parents! And, no amount of reasoning and logic convinces her that she can't possibly have two sets of parents. And she hated her in-laws, if that't who she's referring to, but, no, it's not her in-laws, its her "other parents"! So, we are back to, nothing will do but we have to get into the car and drive around looking for their house. After a few blocks she forgets what we are looking for, or can't give me any more directions, and SO we go shopping, or some place I want to go while we are at it, or we just go back home, but it satisfies her need to wander and her restlessness and anxiety for a while. =)
Your partner is probablu not too much in touch with reality, depending on how advanced his dementia is anyway, and this is kinder, it will give him a chance of at least not being traumatized by thinking he's been "put away" in a home, and at best, he might actually have a chance of enjoying it, like the lady who thought she was in a luxury hotel. If the whole ruse falls apart, at least you get to go where you need to go, and he is where he is safe while you are gone. If he confronts you about lying to him, which I doubt he will remember, you can plead innocence and say you thought for sure that it was a hotel, college, etc.... People do that sort of thing with young children all the time when they know the child won't understand or accept the actual situation. Your partner very likely is mentally at the same level of comprehension as a young child, and a little creative story-telling will make it easier on both of you. If you were in his shoes, which would you rather believe, that you were going to a nursing home (perhaps for good, maybe they're just telling you it's temporary), or to some place you might actually enjoy? Think of other situations where telling the truth would actually be cruel or cause terrible harm, like when people hid Jews in Nazi Germany and had to lie in order to protect them.
Anyway, I hope I haven't offended too many people, everyone has to do what seems best for them and for their loved ones. I hope this helps you.
Establishing POA is all well and good, but it doesn't answer the fundamental question of how to do make a belligerent adult do something he doesn't want to do? Having DPOA may give you the authority to make a doctor's appointment, or a dental appointment, or arrange for a respite stay. But if a 160-pound man says "I'm not going to the #$#!@ dentist and you can't make me!" how do you get him into the car and then into the dentist's office? (Or the day program or the doctor's office, or the respite place?)
carolbutts, I don't have an answer, but I send a hug, and a hope that someone else will have a practical answer for us.
I may have gotten a little confused? Carolbutts, is your partner agressive or is that Misssassy's husband? Either way, regarding Carol's question, I think Jeanne provided a good answer: call around to various resources for some pro input. Alz Assoc has 24/7 phone consultations with MA level clinicians. Obviously they'd appreciate you calling during the day for non-emergency issues. Do you have a POA already? If it is a health care POA, you can make the arrangements and deposit him, although, of course, who would want to do that? Is there someone he already knows and trusts that could stay with him, and add extra someone coming in too? Or could he travel with you possibly and have someone accompany you to help care for him? Just trying to generate some brainstorming/out of the box thinking. I am sorry you are facing this dilemma. Try to get something going so you aren't in the same difficult situation again in the future. I can sometimes get my mom to go along with things she's not too keen on, by asking her if she could do xyz to "help me/make things easier for me, even tho I know it wouldn't be her first choice" This helps with little things, not sure if it would result in agreement to respite placement though. Also, writing things down for my mom helps her, as she can refer back to them as a substitue for her memory that is not working. Keep it simple though. I am going for x days to see x, I need to know you will be ok so I can have a break, I have asked you to stay at xyz for x days. That will help me to not worry so much. They will fix your meals and make sure you stay safe. I will be back to get you on xx/xx/xx and we will both go home then. So and so will come visit you while I am away, so you won't get lonely." Of course don't say someone will visit if you can't actually work that out with certainty. I don't envy your situation, so sorry you are facing this. I have worried about this too. I have someone who comes in but she is only available certain days, I worry what would happen if something happens to me. I am trying to to work out a double back up plan myself. Let us know if you get any workable solutions or if you just need to vent. Hugs and prayers.
MissSassy, I hope you can work out a long term out of home placement for your husband, it sounds like that would be best for everybody involved. I'm sorry you are having so much to handle. It sounds overwhelming. You could also call your local area on aging office and alz assoc. for more resources. If he goes into the hospital for any reason, he could possibly be discharged into a placement directly from there. Good luck to you too. Make sure you stay safe.
sunflo2, you are so right that getting the loved one to visit the respite center ahead of time is a great idea. But how do you "insist" that they do that, if they are belligerent an refuse? How do you physically get them into the car? Or if you've gotten them into the car on some other pretext, how do you get them out of the car at the destination? I'm not trying to be argumentative, I just truly cannot picture how this is done. I've thankfully had very little experience so far with belligerence in my husband with dementia, but enough of a glimpse to see it as a huge problem. ~~~~~~~~~~~ And thinking some more about calling the police ... that is kind of worresome, too. Does this mean that the child who has POA for me could make an appointment, say for acupuncture, and then if I refused to go, call the police to take me to the appointment? Huh? It must take more than having DPOA to call upon police for this. Would there have to be some document or proof that I was incompetent?
If you do get them there and they refuse to talk with the staff, they will not force it either because it violates the person's rights. This is why my mother's doc can only do so much and why my sis and I can only do so much. What I was told by a doc...if you call the police, they will come out and evaluate the situation and if they think the person is incompetent or a harm to themselves or others, they can take them to the hospital for further evaluation. They will not take a person to an appt.
Even if you have said documentation on your loved one, why would the police take that person to an appt. when all that person is going to do is fight the doc. Here in the part of Ca. I live in, if I called the police and they take my mother to the hospital, she then most likely be transferred to St. Joseph's Behavioral Center in Stockton where they would evaluate her, put her on meds and keep her there for a few weeks to make sure the meds are working then send her home as long as she has someone to care for her at home. I am dealing with a difficult parent and even if we get a conservatorship and my mother still refuses...then what. My thoughts are that it is time for them to be placed in a facility if medication does not help in getting them to cooperate regarding their best interest.
Kabeeena, I'm all for creative story-telling for the sake of making life easier/safer/healthier for the loved one. You have to be very in tune with the person's mindset and impairments for this to be effective. There can be huge vairations from one stage of dementia to the next, or from one type to another, or just between individuals. The caregiver has to figure out what will work with the particular individual they are working with. My husband has Lewy Body Dementia, and one of its hallmarks is widely fluctuating cognition. Some days (hours) he can seem almost "fine" and other times he is clearly impaired. It is pretty challenging to come up with creative stories that will work through the fluctuations!
There are elder care/gerontology practitioners, usually nurse practitioners or social workers who specialize in dementia, who will consult and even do interventions to help a family move a demented, cantankerous loved one to a facility. I'm sure they would do it for respite trips to a facility, also. I cannot remember the exact name or association that these people belong to, but maybe someone else here knows what I'm talking about. I looked into it last year, but never had to actually use one. I live in Va., and there were 6 or 8 of them right in my city. My best to all of you. What a journey we are in the midst of!!
Carol, I'm still thinking about your question, and my heart really goes out to you!
In addition to the need for respite care, I'm wondering if you are safe keeping your partner at home. Belligerence and dementia is a dangerous combination. Often such a person does not recognize his own strength and cannot grasp consequences from behavior. The risk of them doing something in the moment that they will regret in the next moment is high.
Have the doctors tried to address the belligerence?
But, back to the respite issue. Try calling your local Alzheimer's Association, even if he has a different form of dementia. If anybody has heard it all, it must be them! Descrbe the issue and see if they have suggestions. Resistance to going to respite center must be common. Does the staff there have any suggestions?
As others have suggested, IF you could find some in-home care for those 10 days that MIGHT be less stressful, but I'd be pretty concerned about that, too. What happens on day 2 when he is alone with some caregiver and he gets angry because of being "abandoned" and gets belligerent?
You did a smart thing by posting here, but so far no one with experience in this has happened along. Maybe someone still will, but I suggest you also contact the ALZ association, his doctor, the respite care center, your local Agency on Aging, and any other resource you can think of.
You should not be a prisoner in your own home, no matter how much you love your partner. I sincerely hope you find a way to be with your grandson. Please share your efforts. We learn from each other.
Time is of the essence....if his regular doc is on vacation..find another one...maybe the new one will be even better. I've done this before. When you at your wits end....there is no "waiting around for doc to come back from vacation". The new doc can have all of his records transferred. I've been there, done that and that is what I did. I took control even though mom didn't like it and argued about EVERY little thing. I too got NO SLEEP and I was the only 24/7 care person. Siblings have nothing to do with her. Also, tell the new doc that you need a med evaluation because his meds are NOT working. It will make a big difference once he gets on the right meds. Went through this with mom too. She was up all night turning burners on the stove on, getting knives out of drawers, trying to go outside in the middle of the night with SNOW on the ground...of course this went on all day AND all night. I finally put her into another nursing home. They have YOUNG patients in the nursing home with dementia too..it's not an age thing. Sounds like early onset Alz to me..Mom started with her dementia when she was in her forties too. I'm just praying that I don't get it...I'd rather shoot myself.
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.
I agree that:
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I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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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.
I know it's lying, and it really felt terrible to me when I had to start doing this sort of thing with my mom, but she is not dealing with reality (or truth) anyway, and it just makes life easier for both of us. For example, she thinks her parents are still alive and daily wants to go home to them. I used to try to tell her the truth, and tell her how old they would be if they were still alive, etc..(they would be 130 and 140 years old), but that doesn't fase her, all logic and reasoning like an adult is gone. She would either get furious and tell me I was wrong, she just saw them yesterday, etc... or she would believe me and would be crushed with horrendous grief and cry gut-wrenching sobs as if they just died today. And It was agonizing for me, watching her grieve this way every day, it was really just so cruel. Her parents loved to travel, and often went down to Mexico on long driving trips, so I started telling her they were on a long trip to Mexico again. If she still wanted to go to their house, I told her they had everything turned off because they knew they would be gone a long time, so it would not be safe or pleasant to go there with no light, heat, water, phone, no food in the fridge, etc. This really worked. She was able to accept that story, and she would be disappointed, but she could be happy knowing they were having a good time. She would ask again a while later, and I would have to tell her the same story again many times, but at least there was not the stress and agony for both of us of trying to tell her the truth all over again. The only problem is, after months of this solution, my mom cleverly thought of a way around it: "I'm not talking about THOSE parents, I want to go see my OTHER parents!" She just invented a whole new set of parents! And, no amount of reasoning and logic convinces her that she can't possibly have two sets of parents. And she hated her in-laws, if that't who she's referring to, but, no, it's not her in-laws, its her "other parents"! So, we are back to, nothing will do but we have to get into the car and drive around looking for their house. After a few blocks she forgets what we are looking for, or can't give me any more directions, and SO we go shopping, or some place I want to go while we are at it, or we just go back home, but it satisfies her need to wander and her restlessness and anxiety for a while. =)
Your partner is probablu not too much in touch with reality, depending on how advanced his dementia is anyway, and this is kinder, it will give him a chance of at least not being traumatized by thinking he's been "put away" in a home, and at best, he might actually have a chance of enjoying it, like the lady who thought she was in a luxury hotel. If the whole ruse falls apart, at least you get to go where you need to go, and he is where he is safe while you are gone. If he confronts you about lying to him, which I doubt he will remember, you can plead innocence and say you thought for sure that it was a hotel, college, etc.... People do that sort of thing with young children all the time when they know the child won't understand or accept the actual situation. Your partner very likely is mentally at the same level of comprehension as a young child, and a little creative story-telling will make it easier on both of you. If you were in his shoes, which would you rather believe, that you were going to a nursing home (perhaps for good, maybe they're just telling you it's temporary), or to some place you might actually enjoy? Think of other situations where telling the truth would actually be cruel or cause terrible harm, like when people hid Jews in Nazi Germany and had to lie in order to protect them.
Anyway, I hope I haven't offended too many people, everyone has to do what seems best for them and for their loved ones. I hope this helps you.
carolbutts, I don't have an answer, but I send a hug, and a hope that someone else will have a practical answer for us.
MissSassy, I hope you can work out a long term out of home placement for your husband, it sounds like that would be best for everybody involved. I'm sorry you are having so much to handle. It sounds overwhelming. You could also call your local area on aging office and alz assoc. for more resources. If he goes into the hospital for any reason, he could possibly be discharged into a placement directly from there. Good luck to you too. Make sure you stay safe.
~~~~~~~~~~~
And thinking some more about calling the police ... that is kind of worresome, too. Does this mean that the child who has POA for me could make an appointment, say for acupuncture, and then if I refused to go, call the police to take me to the appointment? Huh? It must take more than having DPOA to call upon police for this. Would there have to be some document or proof that I was incompetent?
In addition to the need for respite care, I'm wondering if you are safe keeping your partner at home. Belligerence and dementia is a dangerous combination. Often such a person does not recognize his own strength and cannot grasp consequences from behavior. The risk of them doing something in the moment that they will regret in the next moment is high.
Have the doctors tried to address the belligerence?
But, back to the respite issue. Try calling your local Alzheimer's Association, even if he has a different form of dementia. If anybody has heard it all, it must be them! Descrbe the issue and see if they have suggestions. Resistance to going to respite center must be common. Does the staff there have any suggestions?
As others have suggested, IF you could find some in-home care for those 10 days that MIGHT be less stressful, but I'd be pretty concerned about that, too. What happens on day 2 when he is alone with some caregiver and he gets angry because of being "abandoned" and gets belligerent?
You did a smart thing by posting here, but so far no one with experience in this has happened along. Maybe someone still will, but I suggest you also contact the ALZ association, his doctor, the respite care center, your local Agency on Aging, and any other resource you can think of.
You should not be a prisoner in your own home, no matter how much you love your partner. I sincerely hope you find a way to be with your grandson. Please share your efforts. We learn from each other.
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