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Don't quote (no that it is that exciting :lol: )

 

My mom is recovering from a broken hip and we've discovered that her memory issues are a lot worse than we thought. Basically she's been deflecting and changing the subject to cover it, but it's now evident her cognitive abilities aren't going to allow her to be alone anymore. There is a profound thyroid problem and a probable b-12 deficiency that might help some, but, in reality, we've entered that stage with our parents that we all get to. 

 

I am very good at hospital advocating, dr visits, understanding and researching medical issues. Problem is I am not a patient caregiver :glare: She is not a great patient - she's been extremely stubborn and somewhat difficult for years and that has led me to cut back on contact - she's not nearly as bad as the stories I read here - just not all that fun to be around, critical, etc. We have a fine relationship, I have just scaled way back on contact. She has declined medical care for years that I feel has led to some of her issues and I'm resentful about that. She can afford caregivers, but doesn't want anybody in her house. My sister lives out of town, my brother travels for work, and I work and have a teen son. We can't be the long term caregivers although we have made it work for the last 10 days. 

 

So, how do I turn my attitude around? Can someone point me to resources that will put dementia or this type of behavior in a better light? Something that will give me perspective on her past behaviors so I can be more sympathetic? I am a fine caregiver - very nice and helpful - when it's my turn, but I can feel my patience wearing thin. I will do everything in my duty - I just would like to do it with a nicer heart, IFYKWIM? 

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If you can't do it for HER, then do it because it is the kind thing to do. Do it to model goodness to your child.  Do it because it needs to be done.

 

Read the 36 hour Day if you haven't yet. Understanding Difficult Behaviors is another good one.

 

Essentially, in my experiences, caring for difficult older people kinda parallels parenting the willful toddler.  They act according to their emotions, and not by logic.  They may not use their words well to tell you what is going on.  Anger can be an easier emotion to draw upon--even if fear or exhaustion or illness is the underlying challenge.

 

Perhaps as "she" goes, someone kinder and nicer will emerge?  Perhaps as the walls fall down that she has built up over the years, you'll come to an understanding of why she behaves the way she does?  Sometimes it happens, not always, but enough that I've experienced some of that.

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Just another thought ... are you sure it is a long term cognitive issue? Or could it be related to pain medication, a possible UTI, or simply, the stress of recovering from the fracture. All of these can hamper the cognitive function of an elderly person. BTDT with my mom. We had a better relationship in her later years, but there were some trying times. I did have to treat her being difficult the smell way I would treat a toddler. Patience and understanding. I tried to see things from her point of view. And ... a big help here ... I insisted that she allow for help. I was homeschooling younger children and I could not take care of her and be a parent, let alone get any homeschooling done.

 

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Just another thought ... are you sure it is a long term cognitive issue? Or could it be related to pain medication, a possible UTI, or simply, the stress of recovering from the fracture. All of these can hamper the cognitive function of an elderly person. BTDT with my mom. We had a better relationship in her later years, but there were some trying times. I did have to treat her being difficult the smell way I would treat a toddler. Patience and understanding. I tried to see things from her point of view. And ... a big help here ... I insisted that she allow for help. I was homeschooling younger children and I could not take care of her and be a parent, let alone get any homeschooling done.

 

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This is an excellent point. Hospital delirium is a real thing and not quite the same as dementia. Please try to get a consultation with a neurologist.

 

I also agree with the suggestion of making sure the right documents are in place - POA, your name on HIPPA releases, that sort of thing.

 

Do not beat yourself up. Caregiving is very hard. Being her advocate is a wonderful gift - that in itself is a Big Thing.

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SHe's been showing some cognitive issues for awhile, and there is a possibility they are thyroid related and might improve with treatment. She and my dad lived alone and she worked full time with admin help, so she was getting along. Her issue now is she doesn't seem to be able to understand the physical limitations of her injury and we are afraid she is going to hurt herself. We are very hopeful that in a couple months when she is fully healed and the meds kick in we might see some improvement.

 

I ordered the book for my Kindle! Will read tonight - that is exactly what I need. I will care for her and provide every opportunity for her to get better, It is my duty, and I know important to her as she did it for her mom and dad and grandmother. We know her wishes on this subject and will do the best we can. We have a power of attorney in place.

 

Thanks for all the advice and experience. 

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I just wanted to add that some doctors, when they hear of a history of dementia stop looking for other causes, even when there is a sudden decline in lucidity/cognitive abilities. You may need to find other professional als to help advocate for appropriate care.

 

We had that happen with my mom, who was on a a medication often given to Alzheimers patients due to some residual aphasia from a series of minor strokes. Once the doctor saw that, he treated her has a non-person. He talked about her as if she wasn't there and made it sound like rehab was a waste of time "given her condition." It took everything I had not to punch him. Prior to her fall, she had been driving all of her more disabled friends on their errands (shopping, doctors appointments, etc.) I had to get the social worker involved to insure adequate care. Yeah, mom was out to lunch and not able to participate as much in her care decisions, but that was partly due to the severe pain (pelvic fracture means pain just wiggling a toe), the heavy pain meds that barely touched the pain, and the UTI acquired in the hospital. I ended up reporting this doctor after I got Mom's primary doc involved who knew her and her capabilities prior to the fall. (This was 10 years ago and my blood is still boiling. )

 

 

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I just wanted to add that some doctors, when they hear of a history of dementia stop looking for other causes, even when there is a sudden decline in lucidity/cognitive abilities. You may need to find other professional als to help advocate for appropriate care.

 

We had that happen with my mom, who was on a a medication often given to Alzheimers patients due to some residual aphasia from a series of minor strokes. Once the doctor saw that, he treated her has a non-person. He talked about her as if she wasn't there and made it sound like rehab was a waste of time "given her condition." It took everything I had not to punch him. Prior to her fall, she had been driving all of her more disabled friends on their errands (shopping, doctors appointments, etc.) I had to get the social worker involved to insure adequate care. Yeah, mom was out to lunch and not able to participate as much in her care decisions, but that was partly due to the severe pain (pelvic fracture means pain just wiggling a toe), the heavy pain meds that barely touched the pain, and the UTI acquired in the hospital. I ended up reporting this doctor after I got Mom's primary doc involved who knew her and her capabilities prior to the fall. (This was 10 years ago and my blood is still boiling. )

 

 

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My friend's dad is in his 70s and is sharp as a tack.  He still drives a school bus every day and has a very active life.  But he got something or other and landed in the hospital.  The meds and the condition made his brain very, very fuzzy.  

 

My friend is a nurse practitioner and she would visit him and see the way he was treated while in the hospital and it unnerved her.  They treated him like a vegetable. They were kind enough to him, but acted as if he was just a lump.  She had to tell them over and over, "This man is a vibrant man with a sharp mind and an active life," in order for them to look beyond anything other, "Oh, here's an old guy with dementia...we don't really have to listen to anything he says because he doesn't know what he's talking about..."

 

So yes, make sure the medical people aren't writing her off because of "dementia."  Sure, she may have it, but keep a careful watch on things to be sure they're not dismissing real concerns because of "dementia."

 

The condition has been dealt with and he's back to his old self now.

 

 

As far as the original question...I'm not sure how to care-give without getting resentful or impatient.  My own mother and father are sweet people and I would be ok caring for them and being patient (as much as anyone can in that situation), but my in-laws have always been so passive-aggressively critical and I find them difficult to be around for large periods of time.  I worry that we'll have to be involved in caring for them and hope we don't.  It will be hard to be patient with someone after 25 years (so far) of passive-aggressive criticism.  

Edited by Garga
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As far as the original question...I'm not sure how to care-give without getting resentful or impatient.  My own mother and father are sweet people and I would be ok caring for them and being patient (as much as anyone can in that situation), but my in-laws have always been so passive-aggressively critical and I find them difficult to be around for large periods of time.  I worry that we'll have to be involved in caring for them and hope we don't.  It will be hard to be patient with someone after 25 years (so far) of passive-aggressive criticism.  

 

This is how I feel too. My sister doesn't have kids and lives in the same town as our folks so she'll end up taking them on. My IL's don't live close to us or my SIL. She only has 2 kids so she'd probably have to take them in. I know that there is no way that I could be the primary caretaker for either of my IL's.

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About the criticism, I try to note its arrival without feeling the words: Ah, there it is again, what's today's subject, how long, oh it's finished. Be an observer.

 

I recommend at this stage thinking hard about your situation and being prepared for difficult conversations. If she can afford to pay for care and you are too busy to cope long term and still nurture your immediate family, you need to tell her that. Become her care manager and not her carer.

 

About past behaviour, my therapist suggests thinking about the person she is now as if she were not the same being as you resent for past actions. Who is she now, what can she offer, what does she need and what can you give.

Edited by Laura Corin
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I think it's okay to know your limitations and work with that.  If you already know this is not something you can do, then give yourself permission to get someone else to be the day-to-day caregiver.  Whether that is in her house or if she needs to move to a long-term facility is up to you both.   Remember, they are professionals and know how to handle difficult patients.   You can still be very involved with her care and see her everyday (if you wish), but you might have a much better mother/daughter relationship if the full brunt of care is not on your shoulders.  

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....it permanently changed my relationship with my Mom, so know, your kids are watching and paying attention to how you deal with it too. I’m not saying that to come across in a negative way- but as an adult child watching how my mother did and did not cope with the situation, there was no way for it not to color the way I saw my own mother afterwards.

:(

Could you describe this a little more fully, please?

 

ETA I guess what I'm wondering is whether the perceptions you drew as a child/youth changed as you grew older and came to understand that these situations are often way more complicated than they may appear on the surface. (Of course your situation may not have been affected by other factors, just wondering.)

Edited by Seasider
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SHe's been showing some cognitive issues for awhile, and there is a possibility they are thyroid related and might improve with treatment. She and my dad lived alone and she worked full time with admin help, so she was getting along. Her issue now is she doesn't seem to be able to understand the physical limitations of her injury and we are afraid she is going to hurt herself. We are very hopeful that in a couple months when she is fully healed and the meds kick in we might see some improvement.

 

I ordered the book for my Kindle! Will read tonight - that is exactly what I need. I will care for her and provide every opportunity for her to get better, It is my duty, and I know important to her as she did it for her mom and dad and grandmother. We know her wishes on this subject and will do the best we can. We have a power of attorney in place.

 

Thanks for all the advice and experience.

I would make an appointment with her PCP, bring all the medications she is on, and discuss her suspected dementia. Even things you wouldn't suspect, like statins (cholesterol lowering meds), can cause denentia-like symptoms in the elderly. Sometimes it's a combination of medications that can do it.

 

Always suspect the medications as he cause first, ime, especially for an old or a young person.

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About the criticism, I try to note its arrival without feeling the words: Ah, there it is again, what's today's subject, how long, oh it's finished. Be an observer.

 

I recommend at this stage thinking hard about your situation and being prepared for difficult conversations. If she can afford to pay for care and you are too busy to cope long term and still nurture your immediate family, you need to tell her that. Become her care manager and not her carer.

 

About past behaviour, my therapist suggests thinking about the person she is now as if she were not the same being as you resent for past actions. Who is she now, what can she offer, what does she need and what can you give.

Very wise advice. Be the watcher.
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I think it's okay to know your limitations and work with that.  If you already know this is not something you can do, then give yourself permission to get someone else to be the day-to-day caregiver.  Whether that is in her house or if she needs to move to a long-term facility is up to you both.   Remember, they are professionals and know how to handle difficult patients.   You can still be very involved with her care and see her everyday (if you wish), but you might have a much better mother/daughter relationship if the full brunt of care is not on your shoulders.  

 

Yes, think about your abilities and stand your ground.  Some people are cut out for this and others are not.  These caregiving relationships can creep into abusive relationships, even though the person with limited faculties isn't really at fault.  I'll be vague, I can share more in PM when I have time, but the tendency (and everyone's expectations) is that you put their needs above yours.  So they won't allow anyone else to care for them...you do it 24/7.  They are a danger to themselves or afraid to be alone...you stop leaving the house and living your life.  Their needs are unfulfillable, but you neglect your dh and children to try.  

 

Your kids are watching...mine watched through his entire high school career.  He watched me become increasingly isolated and depressed.  He watched my health fail.  He took over as much as he could including much of his education, but it was never enough.  My marriage, though not yet over, will likely never recover.  The damage to my health and body will not fully heal.  I'm in treatment for PTSD.

 

Once I was completely broken, I did see the light. A good facility with well-rested, caring workers who only work 8 hour shifts has been so much better than home with an exhausted single caregiver who hasn't slept well in years.

 

Please, do what you can, but keep a clear head about what is too much.  Don't care for a elder by depriving your children of their mother or your husband of a wife.  The increase in needs is an insidious creep.

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I am caregiver to my husband. It has taken a toll on my children and my marriage. I wish I had seen what it was doing to my kids sooner. They always seemed to be handling everything so well. That is a post for another day.

Point I am making, be aware of your limitations. It is easy to make your life about serving their needs and you don't even notice it is happening until you are

deep into it. There is nothing wrong with receiving outside help. It is not a failure on your part. It is doing what is best for the person who needs care and for yourself.

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It's okay to NOT be the caregiver.

 

If you know you're not going to be good at it, then it's okay to pay for a professional to do it (perhaps with the help of other family members), either in your home, or hers, or in a nursing home.

 

Indeed, it is your duty to do this if your care would be inadequate, or cause you to neglect your other responsibilities.

 

(And even if you think you'll be great at it, it's okay to pay for respite care a few days a week so you can do other things.)

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Indeed, it is your duty to do this if your care would be inadequate, or cause you to neglect your other responsibilities.

 

 

This...a million times...This!  

 

You tend to think that no one loves this person as you do, so no one can provide the care like you do.  It's really hard to accept that someone could provide better care than you do. 

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I wish I had seen what it was doing to my kids sooner. They always seemed to be handling everything so well. 

 

 

This is so true...they see your pain and turn themselves inside out to appear as though they are handling it.

 

I know my posts seem negative on elder care, and I'm not trying to discourage anyone from doing it, but I think eyes need to be wide open.  At the very least, one needs an objective, outside person to let you know when things are going south.  

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I would contact your local office on aging, I assume most communities have them. They are a great resource for answering your exact questions. They may even be able to connect you with adult day cares and other such offerings. I completely agree with getting legal paperwork in order as well ASAP. Perhaps even start inquiring about assisted living facilities; that would make me nervous to leave her home alone with memory issues, if indeed that's what it turns out to be.

 

Our area has an excellent geriatric medical clinic, but that may be a rare service. They are fantastic at doing extremely comprehensive exams and a multitude of testing to determine the cause of the memory impairment and other geriatric issues, then assist with what needs to be done next.  

 

Hugs!! 

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OP, I am really sorry you are in this position. I cared for my mother, who has Alzheimer's, in my home for almost a year, when it became clear that my dad was not doing enough for her and my siblings were not willing to step up. So even though my siblings lived in the same town and had no children at home, and I lived three hours away and was homeschooling four children, who were then ages 5-8, I took her in. I was determined that she not go into a nursing home.

 

When I was a teen, my grandmother with Alzheimer's lived with us, for six years. My mother worked full time and was going to school, so my sister and I helped a lot with Grandma's care. I knew what I was getting into.

 

But after that year with Mom, I had to be the one in the family to say that she needed nursing home care. Because I knew I could not continue to put her needs above those of my children, and I was in a constant state of stress.

 

If I had had some family support, things may have been different. But we ended up with Mom in the nursing home, even though she had been vocal about never wanting to live in one. (She had worked in a nursing home as a nurse for a time, and her own father spent the last year of his life in one, so she knew what they were like.) There have been some issues to work out -- financial things, and Dad actually moved her from one facility to another after a couple of months when he found one he liked better. She has been fine there and well taken care of, and although I still wish that I could have done more, I know it was the right decision.

 

I also watched my mom with her mother when I was a teen. And often it was not pretty, and Mom was not as patient as she should have been, even though she herself was a nurse. Thirty years later, I can say that those years with Grandma in our home marked my adolescence and affected my opinion of my mom. And I definitely had some resentment about having some caretaking duties when I was still a child myself, though I loved Grandma and did my best when I was in charge of her at home.

 

All that to say that even some people who desperately desire to care for loved ones at home find that it is best not to do it. And that it can have a lasting effect on the children in the household. It may seem selfish to say that you cannot take on the burden of caretaking. And those who are able, are to be commended -- it does work well for some families, though it is always hard. But it is a time when you must be honest and realistic about what you can do. If your mother has financial means, she does have an obligation to prepare for her own needs as best as she can.

 

I do agree with others, however, that you may find her mental state improves as she starts to recover from her injury. MIL has just had a health crisis, and her cognitive skills decreased to an alarming extent (history of dementia in her family, as well), but she is starting to bounce back, even though we were worried she might not.

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OP, I wonder if it might help you to frame your thinking in this way: If you are dealing with dementia, the person is going to be unhappy with your decisions, no matter what you do. So make the decisions that are best for everyone, even if they do not please the person who needs help.

 

When my mom lived with me, she was unhappy with so many things that I had to do for her. And it is just the way dementia is, because they lose their ability to reason through things, so that their momentary feelings are all that they can conceive of.

 

So she was displeased when I had to help her in the bathroom and when I had to make her take showers. And when she had to go places with me that she didn't want to go. And when she had to stay in my home, when she wanted to leave. She would ask continually to go home, but the home she wanted didn't exist any more, because it was her childhood home with her parents that she longed for.

 

This is completely typical.

 

So you can go through a period of time now where you set boundaries and have her displeased with you. Or you can agree to be her caretaker, though you believe you are not cut out for it, and still have her displeased with you later.

 

It's a no win situation. There are going to be unpleasant emotions to deal with, either way. So just do your best to make good choices that are right for the whole family, even if they are not what certain individuals would prefer. It's a hard time, I know.

 

:grouphug:

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FWIW, my mother thinks less of me now than she did two years ago when I welcomed her into my home.  The very fact that she was happy with me - adored my home and garden, felt loved - meant that when I finally listened to the stress that I and my immediate family were feeling and told her she needed to move to a care home, she felt I had unfairly taken something away from her.  If I had moved her straight from her dangerous, ramshackle home (which was a danger to her elderly neighbour because of neglect) where she was lonely and afraid, and put her into a perfectly decent care home where I could have visited her on Saturdays, she would have had less resentment against me.

 

Pretty raw - she just went into the care home and has been accusing me of the most vile things.  She doesn't have dementia but she's miserable at the move and lashing out.  I'm afraid that elderly care often stinks.

Edited by Laura Corin
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Something to think about--begin as you mean to go on.

So, provide kind but clear feedback about how you should be treated.

 

Ex.

 

"You're a horrid daughter for not getting me hot cross buns right now!"

"In our house namecalling is not allowed.  And, I shop on Tuesdays and Fridays--I'll put hot cross buns on the list for the next trip."

Lather, rinse, repeat.

 

Someone who is in pain is going to need more patience and deserves sympathy but that's not an entire license to be mean.  

 

When I see caregiving get bad it's often because things fester over a long period of time.  

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I’m sorry, Laura. But I appreciate your willingness to share your story. After taking care of MIL until she passed, I am now facing my dad’s needs. Siblings are in denial big time and I’m struggling because if I force the difficult conversations I’ll probably damage my relationship w my dad.

 

I hope your mom adjusts and that this lashing out is temporary. Though it’s hard to forget things that were said.

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I've done the parent-caretaking thing twice.  The first time was when my mom was on hospice care and that was stressful because it was hospice and she was dying.  The caretaking piece was physically difficult for me, even with help from the hospice folks.  Lots of lifting, hygiene and yuck.  We got through it.

 

The second time was much harder with my dad.  Dementia was a factor and when he was no longer capable of living with us, I had the same experience that Laura shared above.  My brother and I were demonized "bad guys" who stole everything from him - up to the point of him calling the police to have us arrested for stealing his car (the one he has sold the month before).

 

Like Laura - it would have been better for him if he had gone from his old living space to the care home without the year living with us.  He felt hostile and abandoned and threatened by the move after dementia started taking over.

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FWIW, my mother thinks less of me now than she did two years ago when I welcomed her into my home.  The very fact that she was happy with me - adored my home and garden, felt loved - meant that when I finally listened to the stress that I and my immediate family were feeling and told her she needed to move to a care home, she felt I had unfairly taken something away from her.  If I had moved her straight from her dangerous, ramshackle home (which was a danger to her elderly neighbour because of neglect) where she was lonely and afraid, and put her into a perfectly decent care home where I could have visited her on Saturdays, she would have had less resentment against me.

 

Pretty raw - she just went into the care home and has been accusing me of the most vile things.  She doesn't have dementia but she's miserable at the move and lashing out.  I'm afraid that elderly care often stinks.

 

Laura, In those first weeks I almost had a nervous breakdown from the round-the-clock calls, but a nurse friend told me it takes about a year for it to feel like home.  And she was right, after about a year, the worst of it is mostly grousing. It's been two years now and though there are still those days, overall they feel like a family there to him.

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I appreciate all your stories and insight. It is a complicated time no matter what. We knew it would eventually come.

She is very stubborn, private, modest and independent. She doesn't currently really understand her physical limitations or restrictions. It's a tough combination. 

I admit I don't have a lot of patience - her personality, other than the memory loss, is pretty much the same as it's been for the last 20 years. She is never wrong, and is very hard to persuade about anything, and she is not used to not getting her way. This set back is a real challenge for her. I am nice and caring, but it takes a lot of mental energy :) I am still taking things personally, instead of deflecting and observing. I'm trying! 

The caregivers have been hired and will start tonight. We'll see how it goes. I have to convince them that she can't be trusted to tell them she needs help. We plan to stay at the house the next 24-36 hours so they know the routine and what to look for. We will be in and out a lot, and my dad will be home most of the weekend. He is great mentally, but can't help physically, so it should be ok. 

I am reading the book, and we did take a sample in for a UTI test this afternoon. 

 

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Lewber, that’s too bad that her personality towards you hasn’t changed. MIL was always polite to me but very distant. But once her dementia got severe enough to require care, she and I grew very close. I wish we’d had that for the previous few decades but I was grateful to have had it for a little while. It made caring for her SO much easier.

 

Hugs to you during this difficult time.

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