Medical Forum / Diseases and Disorders / Alzheimer's / June 2006
Spousal/Caregiver Issues
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groupsguy@gmail.com - 08 Jun 2006 06:53 GMT Hello...
My wife and I just moved into a house with her parents to help with the care of her father who was diagnosed at 69 with alzheimer's. He's 71 now. We're having a very difficult time because my mother-in-law is verbally mean to him often. We believe that she keeps him at a very high anxiety level because she is unable to understand that he needs help with almost everything. She makes him feel very ashamed for not being able to do things and she basically doesn't treat him with respect. We've tried hard to show her by example and to tell her that her way of talking to him actually makes him worse at performing tasks.
She went away for 5 days and although things were taxing for us (we have 2 small children) he did really well. He was anxious about her being gone, but basically we had a lot of fun...kept things light and helped him in the most dignified ways that we knew how. His communication skills and task related skills went way up over the 5 days. She came home and couldn't believe how well he was doing verbally, but wrote it off to the "ups and downs"...and "you never know how it's going to go".
She's been home 1 day and he was crying tonight because he doesn't like how she treats him.
I don't know what to do. She seems to be impossible to change. My wife is at home with everyone, but she can't handle the care all on her own. I just can't think what is best!
She won't read the books we have about alzheimer's care. She doesn't seem to interested in the senior center, where they give caregiver's classes. She's gone to 2 but she seems to come away hearing only what she wants to hear, which is "I need to take care of myself and not let this drag my whole life down." She does nothing that is fun or enjoyable for him. It seems like all she wants to do is find a way to have time to herself.
What should I/we do?!?!
august - 08 Jun 2006 19:37 GMT > Hello... > [quoted text clipped - 33 lines] > > What should I/we do?!?! Is your MIL cognizant of how detrimental she is acting? Are there any other issues at play like alcohol abuse, or either denial of situation or beginning dementia in the MIL?
No easy answer, but I'd start by asking the MIL when she is acting mean if that is how she would like to be treated if she was in the same situation. I'd also give her a "time out" to go have a talk with herself until she became part of the solution and not part of the problem. You will have to be the adult as the MIL is not acting like a caring adult spouse.
I'd have to no more info before giving further opinions. Do you have a legal and medical power of attorney for the dad - and the mom? Sounds like maybe they would both do better living apart, but I don't know if this means assisted living for the dad or the mom moving somewhere else where she is not dragging down her husband. One thing about dementia is that people with dementia may not know what day it is or who is president, but they certainly remember who is mean to them and who treats them harshly, so your MIL needs to be made acutely aware of this fact unless making her husband really miserable is her goal.
You are a brave guy to try and help in this type situation. all the best, AW
KatelynRain - 08 Jun 2006 19:55 GMT <groupsguy wrote:
> My wife and I just moved into a house with her parents to help with the > care of her father who was diagnosed at 69 with alzheimer's. He's 71 [quoted text clipped - 3 lines] > is at home with everyone, but she can't handle the care all on her own. > I just can't think what is best! <snip>
Boy, can I relate to this! Something very similar happened to a close friend of mine several years ago. I'm going to give you my honest opinion here, based on my friend's experience, but be prepared: you may not like what I'm about to say.
One of my best friends was in tears almost every day over the abusive way her father treated her mother after the woman suffered a stroke that left her somewhat disabled, mentally. Physically she wasn't too bad off...but the stroke caused cognitive impairment, which left her somewhat forgetful, easily distracted and unable to follow through on tasks that involved multiple steps, like shopping and cooking. My friend's mother was always the sweetest, nicest lady. Her father was one of those Type A personalities, to the extreme. He had zero frustration/patience threshold and the most minor difficulties would set him off in a screaming and swearing frenzy. He was very upset that his wife was a different person in some ways, and that she now needed him to take care of her when it had always been the other way around until then. In reality, we all knew he was really scared and upset that his wife was ill and that he had lost a part of her. But this translated into really terrible and unacceptable behavior on his part.
My friend tried to take over the shopping and as much as the cooking as she could, going over their 2 or 3 x a day sometimes. But her father began yelling at her then for not buying the right things and not cooking things the way he liked, etc. He would scream and swear at her. It was impossible. So then he tried taking over some of the work and he managed, but he complained incessantly and was constantly telling everyone how he has to do housework now because his wife is "too dumb now" to do it. He told this to the mailman!
He screamed at his wife constantly, ordering her around and hollering instructions at her, often times when she was doing just fine. It seemed he thought if he could control his wife somehow, he could make her "better" -- force her to overcome her disability. I remember stopping over w/ my friend once to pay a visit. We were there only a few mins. when the husband began screaming abusively at his wife. The woman had been talking on the phone just before we arrived and she didn't hang up the phone all the way, so it started beeping loud the way it does to let you know you're not hung up. The husband realized this and went nuts. Right in front of me and his young grandchildren he shouted at the top of his lungs, "You stupid idiot!! You're so G__D___d dumb! You left the phone off the hook!! How can you be so stupid!! What if someone was trying to call??" According to my friend, this kind of thing went on 20x a day over there.
After we left, I told my friend I think she must intervene. It was not fair to her mother, who was not able to defend herself, that she had to endure such hateful treatment and live in so hostile an atmosphere. My friend agreed, but she didn't know what to do. I told her I'd try to help. I called a friend of ours who's an atty. in our county's public guardian dept. These are protective services for the elderly and disabled adults. She told me that there should be an immediate intervention and that the public guardian's office could help. She gave me a phone number my friend could call and my friend followed up. The guardian's office was very sympathetic to my friend's concerns and they sent out a county social worker to investigate. The SW interviewed both the husband and wife, other family members and a few other people to corroborate the behavior they saw. Even a clerk in the local grocery store reported that everyone working in the store had witnessed the man screaming abusively at his wife when they came in together. It was not at all difficult establishing a case of mental cruelty of the husband against his wife.
My friend's mother was interviewed alone and the SW asked her if it bothered her the way her husband yelled at her and spoke to her. She said she hated it and it made her cry. The SW asked her if she'd like to stay w/ her husband or live somewhere else and the woman said, "I don't want to live w/ him if he can't be nice to me! I'd like to go somewhere else unless he can be nice to me."
My friend felt terrible because she really couldn't take her mother in...they didn't have the room and they had stairs in their home, which would be dangerous to her mother. But the public guardian's office took care of everything. A case manager was assigned and she found a lovely little apartment for the woman in a nice assisted living center only about a mile from my friend's home. The PG atty. obtained a legal separation for the woman, which meant her husband's assets didn't need to be drained for her to receive public funds to pay for all her upkeep, though the husband was required to pay a nominal mantainence fee for his estranged wife's support (which he resented horribly, but still had to pay), which I think he deserved. He ought to pay for the situation his bad behavior caused.
The public guardian's office paid for everything...social work services, legal services, court fees...everything. It didn't cost my friend or her mother a penny. And her mother loved it in assisted living! She was happier there than she had been in years. She made tons of friends, took part in all the activities and everyone was nice to her. She was such a dear and sweet women, everyone naturally loved her. No more getting yelled at, no more being bullied and belittled. At last she was in an atmosphere that was calm, peaceful, nurturing and supportive. My friend and her kids were able to see their mom/grandma all the time w/o having to contend w/ a crazy, foul-mouthed hothead going off every 5 mins. and having to walk on eggshells around him.
Her father went hysterical, of course, but there was nothing he could do. Because the county got involved, he had no power in the situation and had to deal w/ them directly instead of dumping on my friend. In court, the judge gave the old coot a harsh tongue lashing for being such a jerk to his wife who was compromised by a stroke and ordered that the man had to complete a course of anger management and individual counseling before the judge would even allow visitation. He was very resentful of course, but he wanted his wife back (and he hated paying the maintenance) so he tried taking the class and attending counseling sessions. In both cases, he ended up cursing out the facilitator and not going back.
My friend was given POA over her mom, so the judge left it up to her to decide about visitation. My friend would let her dad visit or join a family get-together her mom was at only if her mom said it was OK and her dad would agree to control his behavior. One time he started up, raising his voice and getting nasty and they just put him out and told him that's it for today!
My friend's father resented her terribly for a while and was quite mean to her. She felt really guilty at first, but I kept reminding her that she was doing the right thing for her mother and that her mother's well-being was the most important thing because she was the one who was vulnerable. Her father had serious problems after that and started drinking heavily. But at least her mother had a peaceful, pleasant last 3 years of her life, which she would not have had if she had remained w/ her crazy hothead husband who lacked the emotional control to handle the stress of his wife's declining health. The doctor submitted a letter saying it was imperative that his patient have a calm environment and avoid stress as much as possible because she was at risk for repeat stroke and controlling blood pressure is key to prevention. If my friend had not taken action and the guardian's office had not gotten involved, my friend's mother might have been dead or horribly paralyzed from another stroke within a year.
Ordinarily, when 2 people are in a dysfunctional marriage w/ one spouse abusing the other in any form, I think both parites have to be responsible for themselves and getting themselves help or out, which ever. But in the case of your father-in-law, as was the case w/ my friend's mother, he can't be responsible because he has a condition that affects his mental abilities and he needs an advocate. He needs someone to look out for his best interest because his spouse is not only unable to do it, but is the source of the problem.
In your case, you have an advantage over my friend because your in-laws are now living w/ you and your wife. Therefore, you and your wife are are in a position to tell her mother that unless she can get her behavior under control and conform it to what you 2 deem acceptable, she will not be allowed to remain in the home w/ you and that you are assuming responsibility for dad. If she gets ugly w/ you, let her know that you mean business and that you will get social workers and attorneys involved if she refuses to comply. And then, if you have to, do it. Make the call to your county's public guardian's services and report what is going on and state the kind of help from them you need. Let them take over, if necessary...they can take the heat from your mother-in-law and enforce orders on her to vacate if she refuses to comply. It's very possible that when she knows she's up against the wall, she'll find a way to adapt her behavior and start acting better.
Just like my friend's mother, your father-in-law is at increased risk living in a stressful, hostile environment. His wife's abusive treatment is hurting his blood pressure and upsetting him emotionally. For a person w/ AD, increased stress and emotional upset adds to the usual disorientation of the disease and could seriously detract from better functioning he might have in a calmer home environment.
One more thing: you mention you have young children. It's also much better for them to be spared the stress and turmoil of continually witnessing their grandmother "beating up" on their mentally disabled grandfather. It's not only distressing to children to see this, but it also sends the worst possible message to a child...that it's "OK" for one family member to treat another in such a manner. Everyone in a family deserves to live in a harmonious environment, even children--possibly, especially the children. People who can't get w/ the program should take their bad attitudes, bad tempers and selfishness somewhere else where they won't inflict misery on others. You and your wife have a duty as parents and as adult children to make your home as safe, calm, peaceful and stress-free for everyone who lives there as is possible. Talk to your wife and try to get her together w/ you on this. You need to have a direct confrontation w/ her mother to let her know you and she will no longer tolerate her bad behavior. Get social services involved if you need to. It's hard to handle these things alone. Thankfully, you shouldn't have to...you should be able to get support from the community.
I'm sorry to make this so long. I know a lot of people don't like to read posts longer than a brief paragraph or 2. But I felt I had to share my personal story w/ you to get my message across. I hope you will think seriously about what I've said and I wish you the best in tackling this problem. It's very hard, I know...but all of you deserve peace in your home and your father-in-law needs someone to protect him.
Good luck. You'll be in my thoughts.
~katelyn~
Evelyn Ruut - 08 Jun 2006 23:08 GMT > <groupsguy wrote: >> My wife and I just moved into a house with her parents to help with the [quoted text clipped - 191 lines] > > ~katelyn~ Katelyn, this was such an excellent post, and I don't think anyone would mind its length. It is heartening to read of someone who had the guts to do what had to be done in such a difficult situation. My own father was always a difficult man, a real curmudgeon, who bullied my mother all her life, not to mention everyone else in the family. Fortunately my mom died very suddenly in the year 2000, never having suffered from any kind of dementia, or we would have been in the same position your friend was in, and I honestly don't know if myself or my siblings would have had the courage to do what your friend did, though I like to think we would have found some way if we had to. Bravo for her courage!
 Signature
Best Regards,
Evelyn (to reply to me personally, remove 'sox')
Adelle - 09 Jun 2006 06:43 GMT > Hello... > [quoted text clipped - 33 lines] > > What should I/we do?!?! It sounds like you are trying to do all the right things. Your frustration is evident.
What you are describing reminds me of two things -
First - My grandfather could be incredibly nasty. Part of it was his perfectionist nature. And as they say, age doesn't change you, it just makes you be you - only more so. But my grandfather also had Parkinson's; anger, paranoia and generally nasty disposition are part of the illness (though he could be incredibly charming when it suited him). There are several illnesses which could cause a short temper; some are physical and some mental (depression)
So one thing to think about is conspiring with your wife to use your MIL's wanting to put herself first by making sure she gets a very thorough physical examination and evaluation for depression. And have it be with someone who does gerontology - not just an internist. It's important for her health. But if something is up (Parkinson's, thyroid issues, hypoglycemia...), it could also be important to the entire household. And make sure you send a letter to the physician before her appointment saying you aren't expecting them to contact you, but they should be aware of some behavior issues and you are concerned they have a medical basis.
Secondly - there was a recent documentary on PBS about an Assisted Living/Nursing Home which was trying to change its approach to patient care. One of the story lines was of a couple who each had different issues. The husband had Parkinson's and was slowly sliding into dementia and the wife had cardio/pulmonary issues. Once they were on separate floors, she refused to go see her husband, saying very much the same things as your MIL is saying about needing to put herself first.
My own conjecture - She could not handle the fact she no longer had a partner, an adult by her side, but rather someone else who needed her complete care. And after raising children and taking care of a household with a partner , she didn't have it in her to do it as an individual. Or maybe she did all the caretaking without his help and now resents the need to take care of him so completely.
In the documentary, the woman said she enjoyed talking with her friends, playing cards, etc. She just wasn't going to give that up. Left unsaid was that she planned to do all those things *with her husband* and just because he can not do that doesn't mean the plan should change.
In the scenario Katelyn offered, there was clear verbal abuse with many witnesses, including non-family members, and a medical need for peacefulness. Unless your description has been *kind*, your situation with your in-laws is a little less clear-cut. When I was practicing law, some 15 years ago, the courts required there to be something more than just generalized orneriness: physical threat, clear verbal abuse, refusal to provide appropriate medical care.
You can start by keeping a diary of your MIL's abusive actions, in case you want to call adult protective services. It will provide some evidence of your allegations. It may also start to show you patterns that may point to her actions having a temporal pattern (x hours since she's eaten if it's hypoglycemia), y minutes since she took her medication (side effect of one of her drugs, or an interaction).
If your family has the means, you might also want to look into some of the nicer assisted living communities in your area for your MIL. One group here boasts of all the activities, including classes and everything is enclosed so you can go to any building on the complex and never step outside in winter (a real plus in Massachusetts). Why - well, since she really needs to see to her own care, its a place where her needs for adult company and activities can be met. After all, your wife is so busy with the kids and her Dad that Mom can't possibly be getting her needs for stimulation and care met - right? But only pursue this if you have the means for both parents to be in care. As much as you may want to avoid it, our Loved Ones with dementia eventually need so much care that the physical and emotional burden becomes too great. Well rested caregivers who can do the care in 8-12 hour shifts and then go home away from the Loved One to rest, becomes the better choice.
Adelle
KatelynRain - 09 Jun 2006 14:54 GMT <snip>
> In the scenario Katelyn offered, there was clear verbal abuse with many > witnesses, including non-family members, and a medical need for [quoted text clipped - 3 lines] > generalized orneriness: physical threat, clear verbal abuse, refusal to > provide appropriate medical care. <snip>
Which is why I recommend getting social services involved--they are qualified to do an assessment and to bring in the necessary back-up services, like legal, if it's needed. This is a very tough issue and the adult kids w/ their many other responsibilities as well shouldn't have to wade these treacherous waters alone. From what groupsguy (OP) describes, the situation w/ his in-laws doesn't sound all that different IMO than what was going on w/ my friend's folks. The wife is running the husband down constantly for the skills he's lost, denigrating him, belittling him, not understanding at all that he has a disability, making him cry, disturbing the peace of the home and getting the man's blood pressure up. He's functioning noticeably better when the wife is away. All that sounds like fairly clear-cut examples of verbal and mental abuse and behavior that's harmful to the husband's health and well-being IMO.. For all we know, there are witnesses outside the family who've seen the behavior.
I do hope groupsguy will contact his local public guardian's office to talk over the situation and I hope they're lucky enough to reach professionals who are as compassionate and effective as the ones working in the office my friend reached.
~katelyn~
Adelle - 09 Jun 2006 16:49 GMT > <snip> >> In the scenario Katelyn offered, there was clear verbal abuse with many [quoted text clipped - 9 lines] > qualified to do an assessment and to bring in the necessary back-up > services, like legal, if it's needed. I'm a little torn here. I don't want to discourage people from doing the right thing. But I also don't want to be reactionary. The poster seems to be asking how they can make the Mom accept the reality and step up in a compassionate way.
Not sure that is possible. It depends on the source of Mom's reactions. Is she just incapable of accepting what is happening? Is she burnt out from the two years of care? Is something happening with her own health which is contributing to her reactions?
Is she being cruel, abusive or neglectful? Is she capable of change? Is mom's behavior a sign that she is in need of a longer respite because she is overwhelmed by her husband's needs. Or is she incapable of meeting those needs because of her own personality and emotional makeup? Can a change be effectuated just though family effort? Or must an outside agency intervene as that nuetral third party?
Maybe both Mom and Dad would feel a sense of relief if one or both were in a care setting. We certainly know that most of our LO with AD benefit from the mental stimulation of the activities in a Nursing Home designed for their needs. Or if not a home, is there a day program available in their community?
While involving social services can be the absolutely right and correct thing to do, one must keep in mind that 'Social services' is protective services. It's mandate is to protect elders from abuse. And at least in Massachusetts (where I am. Can't speak for other states), there needs to be some very clear actions which fall under the statute, not just generalized nastiness.
It's also a slippery slope. Once you involve social services, you lose the chance for the person you are reporting to become cooperative in any way. The family has to be willing to live with the consequences of taking an action which will set them against their mother. It might also create counter allegations of undue influence and that they are trying to 'steal' assets because they have moved into the parent's home.
>This is a very tough issue and the adult kids w/ their many other >responsibilities as well shouldn't have to wade these treacherous waters [quoted text clipped - 4 lines] >a disability, making him cry, disturbing the peace of the home and getting >the man's blood pressure up. The OP didn't say anything about blood pressure. What he did say was:
"she keeps him at a very high anxiety level because she is unable to understand that he needs help with almost everything. She makes him feel very ashamed for not being able to do things and she basically doesn't treat him with respect. We've tried hard to show her by example and to tell her that her way of talking to him actually makes him worse" and "he was crying tonight because he doesn't like how she treats him."
The wife is certainly being insensitive. But does it tip into abuse or neglect? Yes, protective services can make that determination. But if they call and protective services decides the situation doesn't quite meet the definitions under which they are required to operate, they have worsened the relationship with the mom and given her this justification that her actions are ok.
Your friend's case was very clear. As this one has been described, its borderline. It may actually be a more clearcut case of emotional and verbal abuse, but I'm not sure we have enough facts to know that from the description we have been given.
Katelyn's friend's experience is a lesson to us that we must protect our loved ones when they are being mistreated. But when we do, we have to have the determination to follow it through and live with the consequences of doing the right thing.
Adelle
Mary_Gordon@tvo.org - 10 Jun 2006 04:37 GMT I think your mother in law is telling you exactly what she thinks/feels. She doesn't want to look after him. She doesn't have the inclination, the patience, the desire. Period. She doesn't want "help". She wants him off her hands - to be unburdened. I don't think you can do anything to change that, including guilt or force her. You may be disappointed in her attitude, but it is what it is. Anger and frustration aren't going to turn her into a willing carer.
Its unfortunate you and your wife didn't "hear" her message before you moved in with the two of them. Essentially the situation is that your wife will be the caregiver, and her mother will do whatever, so the sooner that gets accepted, the sooner you can look at the real longer term options. I know you have only just moved, but given that your wife is already finding this frustrating, a better solution is probably for your inlaws to live separately. If your mother in law is still healthy, she may want to live on her own, rather than share a house with you. After all, if she is active, well and able to be independent, she might be happier doing just that.
With the entire burden of care falling on your wife, consider that its early days yet, and it gets worse, MUCH worse as AD progresses. The job gets harder and harder, and its 24/7. She isn't going to be able to handle this alone - and she is not going to get meaningful help from her mother. First step is to look into adult daycare for him to get him out of the house during the day, to give your wife some time to do other things. Start shopping for a good Alzheimer's unit and get your father in law's name on the waiting list. My mother in law was in one, and although we regret she had to go through Alzheimer's, we don't regret having placed her. We could not have provided the 24/7 support and care she needed as the illness progressed. She was very content and well cared for in the unit, by staff who did a really excellent job, and made her as comfortable and happy as was possible.
Mary G.
Jo Ann Malina - 10 Jun 2006 13:59 GMT Mary_Gordon@tvo.org is alleged to have said:
> I think your mother in law is telling you exactly what she > thinks/feels. She doesn't want to look after him. She doesn't have the [quoted text clipped - 28 lines] > well cared for in the unit, by staff who did a really excellent job, > and made her as comfortable and happy as was possible. This is good advice. If you can afford to have Dad in assisted living and Mom wherever is appropriate, do it. I don't believe young children should have to live with dementia (as I had to do from age 5-13). It's an enormous stressor that can tear your family apart. I know some people will say this is harsh of me, that our parents need our care when they are failing. I say that care can be done at some distance, by people less emotionally involved with the person, who don't remember them as they once were and can never be again.
And if you can't afford it -- well, that is a problem, isn't it? If both you and the in-laws are all poor (and you don't have to be wearing rags to be too poor to afford Alzheimer's residential care), the state may help. If you decide not to get social services involved, check with your local senior center for other resources.
 Signature Jo Ann Malina, make spamthis best to find my address Many people lose their temper merely from seeing you keep yours. -- Frank Moore Colby
Dennis P. Harris - 11 Jun 2006 07:00 GMT > And if you can't afford it -- well, that is a problem, isn't it? If > both you and the in-laws are all poor (and you don't have to be wearing > rags to be too poor to afford Alzheimer's residential care), the state > may help. the OP needs to check into his state's laws concerning medicaid qualification. in some states a legal separation or divorce might be necessary to qualify the LO for medicaid, and the feds have recently tightened the lookback rules (typical repugnican move).
Mary_Gordon@tvo.org - 11 Jun 2006 18:43 GMT Jo Ann wrote:
I don't believe young children should have to live with dementia (as I had to do from age 5-13). It's an enormous stressor that can tear your family apart. I know some people will say this is harsh of me, that our parents need our care when they are failing. I say that care can be done at some distance, by people less emotionally involved with the person, who don't remember them as they once were and can never be again.
Mary responds:
I totally agree. When my mother in law was diagnosed I had one child - a toddler - and by the time the disease took her life, we had three, then aged 8, 5 and just over a year (and she was the last of our four parents to die, so we'd been through the mill on that front). Given that I also worked full time outside the home (I'm the main breadwinner and the one with the "good" insurance), I absolutely could not have looked after my mother in law in the home, and I'm glad I knew that from the outset and we didn't decide to try to have her live with us. As it was, the stress of her illness and keeping her well cared for was very hard on us all - my husband is an only child, and his father had passed away before she got sick. I can only imagine what would have happened had she been in actual house with us full time - yikes, I think we would have come apart at the seams had we tried to look after little ones and her at the same time in the same home.
As it was, my children found her illness deeply distressing, and they had never really known her when she was well. They found it very unsettling and frightening that an adult would act so strangely (i.e. it rocked their sense of security in adults). My middle child in particular was very upset by the whole thing - he got it in his head that getting older inevitably meant a person would turn into the kind of vacant incoherent shell his poor grandmother became. It came out one night in the form of a traumatic melt down - he thought that the few grey hairs and wrinkles I had meant he was about to be faced with losing me as well, and he was really scared.
I loved my mother in law, and we did everything we could to keep her happy, safe and content, and she did have really great care - but honestly, no matter what, the well being of our children and our marriage had to take precidence in the bigger picture, no matter how much we honoured our parents.
Everyone has limits, and you can't do everything well at the same time, and at the same stage of life. You do have to make some choices based on what is best for everyone you have responsiblities to at any particular point in your lives - and wishful thinking has to be banned in favour of flinty eyed realism.
M.
Barb Terry - 15 Jun 2006 18:09 GMT On the other hand my grandchildren,the 11 yr.old in particular spends weeks with us and even helps in the care of my mother.All situations are different and so are kids.Barb
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