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Backseat drivers who didn’t help, but now want to judge and behave rudely towards me.
As the sole POA and decision-maker for my Dad, I would appreciate family asking how I am doing, instead of asking me intrusive questions about finances or how I made decisions in the past. Nobody helped me or even offered emotional comfort when I really could have been helped out with just some kindness and encouragement.
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GBCAgingCare Jul 2024
Gemswinner - your narrative so matches my situation...especially "back seat drivers". My LO (male 81) and I (female 73) moved over 2000 mi from "the family" 20 years ago for my job (and our marriage - we were both excited about the opportunity, and location ). We loved the area / culture / etc and were so excited when the relocation was offered. Backseat drivers (2 sisters and an adult son) (retired or close to it) have never visited - and we were not in a position to travel.

When we moved my LO weighed close to 290 pounds. Without real effort we improved our health and at 20 years he had lost 85 pounds.
About that time we traveled to their area for a long weekend. We were so proud of the improvements in health. "Family" never acknowledged the changes...but after we left they called our state Adult Protective Services and filed a complaint that I was neglecting and starving him! Of course, the State investigation showed the allegations were totally unsubstantiated. A couple of other issues The Family also reported were investigated and of course unsubstantiated.

And remember
So many other incidents that they reported had the same result.
So all of a sudden the specific numbers on his BP/ Blood count / cholesterol etc )were sooo important to them.

It took over a year to get Medicaid approval. There really is a lot of "administrivia" to address and then "hurry up and wait" for their review and decision
He is now in a Long-Term Care facility (stroke, dementia, and general decline in his physical status.) He is very well acclimated and seems happy!
"The Family" didn't want to participate in planning and discussions of services- I think they were afraid I would ask them to contribute financially ...
They expect a personal status report every week - UMMM - NO! I initiated writing a "brief note" on what's happening (mostly monthly unless there are issues) and sending it to his son as the contact point so he can fwd it to the "the family" so everyone has the same info. None of the above are happy with this - Oh Well!
In the meantime, their contacts with LO are Christmas, maybe Fathers' Day ,July birthday, and Thanksgiving or something. And no longer by phone since he can't hear or answer.
AND, in spite of EVERYTHING I am doing to keep LO safe and healthy - The Family never asks about how I am doing or how can they help me...
I think this goes back to when LO's family was caring for their grandmother and they had "problems". "OMG, You're going to have to sell the house, don't sell the truck without asking me...etc.
Bottom line - SUCCESS IS THE BEST REVENGE.
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The stubbornness and refusal by the person needing help to acknowledge how one’s actions ( or inactions) effect others , meanwhile not respecting boundaries, and having unfair expectations .

When they don’t get POA in order and expect a relative to pick up the fallen house of cards .
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I see so much I relate to I this post. I have all the frustrations and feelings mentioned. Have been involved in other’s care since 2007. Moved in with Dad and discovered where Ile
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the fact that its like trying to play chess with a pigeon crapping on the board and messing up all the pieces (I forget which poster had posted that great analogy)!
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One thing…..selfishness. As you said amputation doesn’t supersede her 3rd ice cream cone of the night!

Well, after preparing my home for mother’s arrival- adding a half bath and giving her my bedroom - it is all hers while I sleep on a twin bed and bunk with my treadmill - not a word of thanks. Not a word of “it looking homey and comfortable” - I can only ASSume these things because she sleeps quite well in there!
Well my home is 8 hours north of her so now - after reading all of your advice on here I will now take it and run!
I'm taking her back to her home in 2 weeks- going to her lawyer- either spelling out a plan for her at home or AL.

I’m taking my life back. I have spent almost 2 years in this dysfunctional mentally stressed state in her home while I have other people taking care of my home.

No vacation - no appreciation- I’m mentally and physically exhausted.
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lkdrymom Aug 2024
Please tell us your plan worked
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Yeah I hear you mom2mom, For me it was the selfishness, nastiness and lack of appreciation. Not one positive acknowledgement from my mother about my help. And I did a lot. A thank you would have gone a long way with me.

But it’s nearly over for me. Just have dad now and thankfully he is a lot less demanding. Just give him a jelly donut every day and he’s happy. He is just a nice person.
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So every time a nurse comes over to visit my mom says how beautiful they are and she just goes on and on about it. Not one time has she told me or said anything about what I do for her. She actually said when I was cleaning her in the shower as she is pooping she says I do not know how you do this. I wouldn't do it. I asked her so you would not do this for your own mother she said probably not. I am looking to move her into a Nursing Home as I am 63 and have no life she does not want me to go anywhere except stay here and be at her beck and call. My brother lives down the street but she does not want to bother him. I get so angry at times.
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waytomisery Aug 2024
You can tell your mother you are no longer going to “ do this “.

That conversation in the shower was a back handed compliment designed to manipulate you to keep you in servitude .
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I'm being cared for but I'm not being heard by my caregivers. I have a hiatal hernia among other things but I need a soft food diet. I showed them that if they have to cut up the food with the side of a fork I won't be able to safely swallow it. So they bring me chicken breast. What? Or a crunchy potatoe casserole. No no! I can't eat Chilli beans they're not soft enough. They still bring them along with acidic juices. I've told them time and time again. I've written lists of foods easy to swallow. They speak Swahili so I downloaded a talking translator app and used that.
They acted insulted and focused on each other's facial expressions more than my explanation suggestions and problem solving. Still they act as if I've never voiced my concern. When they come to help me they hurry as if they need to be anywhere other than with me.
I've sat down and told them exactly how their actions and lack of make me feel. They act like they're listening and then they think that after our talk all is better. I tell them No it's not. Once I see that you have heard me and are making the needed changes then I'll start to feel better. Then when those changes permanently take place of the problems then and only then I'll feel comfortable. So far my words fall on deaf.ears and the answers I get are YaYaYa yes yes I understand as they quickly busy themselves picking up or straightening up shelves Then they hurry out my door with a quick ARE you good? And before I can answer they are gone.
My disability is new. Being dependent on others for everything is new. Not living alone is new. I hate it here. I dislike being old but I really hate being old and broken and all alone in a house full of people. I'm stuck here and I don't want to anger those who help me transfer to the commode etc.
So not being heard not being fed not being treated as a human being is what I dislike most about caregivers.
I need help. That won't happen anytime soon. Today 3 meals were served to me today I ate only one and that was at 7:30 am. It's 10:27 pm and I'm hungry.
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MargaretMcKen Aug 2024
Sadnstuck, you need to post this as a new question, with more information. How old are you, where are you, what is wrong with you, how did you get there? “I have a hiatal hernia among other things” clearly isn’t the full story. Unless you just want to vent about how awful you feel, you need to start your own thread. It’s free, why not?
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I am the sole caregiver for my mother (92yo). And I work 3 12hr shifts a week and I am 58yo. I am tired. I want my life back to being my life. She expects me to take her everywhere I go (she'll "wait in the car for me"). I can't go grocery shopping, to my doctor or even for a walk without her demanding she come along (she can only walk about 50feet before being exhausted). She also expects me to drive her around out in the countryside EVERY DAY OFF I HAVE. I feel like I work 7 days a week between work and being home with her. I don't want to retire because 24/7 with her will land me in prison or in the ER. LOL. And she complains/whines until she gets what she wants from me. I remind her there are plenty of people in SNFs that would love to trade places with her. ;)
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JoyceFamily1223 Aug 2024
She's nearly done with her time here please keep going but boundaries
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Samatha, welcome!

But you are a daughter? With endless love, patience & time to spare!
You must provide all the entertainment for for your Mother.
You must strive meet her every need. To do every task she wishes. To ensure she is happy everyday & never bored.

Yes?


PS I HOPE you are screaming out a loud NO. I DO NOT! as you punch a pillow.

If not, try it!!
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I left my job and my apartment when my sister called me crying saying she was going to lose her job if she couldn't get help,so I left my job,my apt,and my kids to come to Tennessee. When I got here me and my fiance took care of my mother 24/7 and the sister that begged for my help did what my other 2 sibling did, they went on living their life while I gave up mine to be her caretaker 24/7,My mother had the best of care,at times she would cuss me or get mad and wouldn't talk to me,I spent quiet a few times on the front porch crying,I wouldn't get a breath in before mom would call me to wipe her,she got bathed everyday either shower or she would want to stay in her chair and wash off.My mom sexually abused me as a child but I didn't let it keep me from taking care of her, the care was getting harder because she was showing signs of demincia and if you didn't agree with her on what she was hearing she would get angry with me,after2 1/2 years by the way toward the end she gave up on walking and I was in my 2nd year of being diagnosed with fibromalyga, After 2 1/2 years with no break because she also kept my fiance on his toes,we were more her servants than anything else,she passed at the age of 82.Now that she has passed my sister wants to evict us from the house,my sister has a home,I felt my home as I was told by my sister because I was the only one who helped her she was gonna give me the house,but now that mama is gone my sister wants us out of the house,I'm devastated she would do that to mem
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JoyceFamily1223 Aug 2024
Your a beautiful person thank you you keep that house my bil is the same my FIL is still here he doesn't call nor text only on the 19th to ask for money he sees is owed
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Reply to AlvaDeer
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Short term - reward yourself with something that makes you happy after you interact with your MIL. Also, consider getting a respite caregiver from an agency; there might be a public agency that provides this in your area.
Longterm - We need to fight to get state agencies to prevent burnouts by sharing the burden of care for elders and children and not leaving it all to family caregivers to deal with.
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At the moment it's knowing that I have to make decisions about everything..... and I'm scared I'll get it wrong.

My husband has a condition similar to Parkinsons plus depression. It's getting harder for him to leave our apartment (he uses a wheelchair once we're out) and I know we're going to have to move into a more ADA-accommodating place soon. However, neither of us want to* and it's manageable for now. But I'm afraid that he'll end up in the hospital again after a fall and won't be able to come home unless we move, so I'm searching.

He says whatever I decide is fine, but I've been The Responsible One my entire life. It'd be nice to really share the burden, but he just can't. It's exhausting. Fortunately, I work remotely so at least I'm here when he needs me.

[*I've long joked that instead of moving everything, I'll just pile it in the front yard and light a match. Not so funny any more....]
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JoyceFamily1223 Aug 2024
Your doing right keep pushing
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I care for two men and it's burn out I made a binder with a schedule for my FIL , and BOUNDARIES
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My FIL & husband are both in my care so it frustrating my FIL is mentally ill and has some sort of early demitia , so he calls me his wife At time get super mad at my husband(44y stroke survivor) for being my priority and my boys for being 5&2 and bonus parent. I made a binder he reads daily to remind him of what's happening but he could care less most days he's sad, he lost my mil in May this year , mad he's with our NYC and in Az but my BIL doesn't want no part so. We choose to bring him to keep him with family most days are okay medication change helped but I'm burned out your not alone
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The thing that bothers me most is the ever changing situations. You think you have one thing down and then it changes and you have to pivot in a different direction. I really learned to roll with the punches or I try at least. I didn’t realize that that was what was going to happen and it feels like a roller coaster most of the time. My MIL is a big fall risk but in her mind she thinks she can still get up and go, and of course forgets to use her walker! The bed ridden stage is fast approaching and I am terrified of this as I can’t move or pick her up on my own! Good luck with your situation just breathe and find your inner strength!
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JanPeck123 Oct 2024
Check out invacare or hoyer lifts and slings that are used for lifting bed bound patients. Hospice or Medicare may be able to pay for such.
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I am 76 and take care of my husband who is 78 and has advanced dementia. I have tried going the caregiver/companion route and honestly it has become more trouble than it's worth. The last 2 quit after he pushed them or screamed at them. I have no life of my own but do not plan to put him in a memory care facility until he no longer recognizes me. My GP has told me that he would not be accepted in a MC facility with this behavior. My own health is tenuous as I have a chronic disease that could hospitalize me with little notice. In the event, he will go to MC immediately ... no other option. We have no children and my step son has vanished as he now knows that he's not in the will. I plan my day around 3 meals, shopping for food, cooking food, cleaning up etc. The one bright spot is that he falls asleep early and then I can relax and read or watch a movie. Otherwise, he's with me 24/7. I can't leave him as he goes out and gets lost. I realize that none of this is productive sharing ...just venting.
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Msblcb Sep 2024
Glasgowgirl48,

I waited to place my mom when I thought she did not know me. It was easier on me. I cannot imagine the heartache of making that decision for a spouse, However, in retrospect, I think my mom would have adjusted better had she been a little more clear headed. She would have made friends easier and enjoyed the activities more. I waited too long. Just a thought. I wish you the best is this difficult journey.
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To be honest, the lack of being able to properly connect or pursue any possible romantic interests, I have to be close by and can't leave for longer than 1 night. As a 27 year old man, I have needs and wants just like anyone else. It is hard to be touch starved, it's like I've taken an involuntary vow of abstinence. I'm hoping I can work on this to make something work.
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AllyOop24 Dec 2024
I'm 60 F and though sex isn't really first on my list (mostly because of menopause and fatigue LOL), I can relate to being "touch starved". I've been so isolated and unable to afford any kind of self-care, that someone only has to hug me before the tears start. I would give anything for a massage or even for someone to play with my hair or rub my feet.

That being said, I feel for you. At 27, nobody can blame you for feeling the way you do. Full-time caregiving at such a young age is unnatural. Yet there you are. Doing the damn thing. My advice? Put yourself out there, because you sound like a catch. And I bet there are plenty of girls (or guys? I don't want to assume LOL) who would love to Netflix and Chill with you.
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I know what you mean. You just described my situation with my 94 yr old mother. Except I have 4 sisters. I guess I was lucky I was born a twin. She is my only respite M-F 10AM - 2PM.
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Dealing with the medical world on any level. Too much to say here in one post. Suffice it to say, the whole medical world needs a major reset. Humanity, compassion, empathy and bedside manners need a comeback.
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BurntCaregiver Oct 2024
@Seekerone

I agree, but care facilities (nursing homes, memory care, assisted living, etc...) are in business for a reason.

Here are two facts for why they stay in business.

1) There's only 24 hours in a day. No one can add more.

2) No one no matter how much they love a person or how kind and compassionate they are, has an unlimited supply of patience.

Sure, we've all seen old people get blown off in nursing homes or memory care facilities and it's terrible. When the CNA has to get care done for ten other invalids who move at snail speed or are being difficult.

I was a homecare worker for 25 years. I saw what can happen when one person has to deal with an needy elder entirely on their own. Everyone needs help and sometimes help at home isn't enough and there has to be facility placement.
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Atlas,
Your comment is down the thread a little so I hope you’re still reading. I am on the same page as you even though my husband is not to the stage your husband is.
I feel like you are on the right track looking at MC, and the sooner, the better. But please, make sure your financial house is in order first. When one is dealing with a spouse, not a parent, and considering long term care, all of your combined marital assets are in play and if you haven’t already sought professional advice from an elder law attorney, please do it now, before placement, to protect yourself to the extent that you can.

I’ve been slow on this because my husband’s behaviors are tolerable so I apologize for being all ‘do as I say, not as I do’ here, but things can change so quickly with dementia and finding the right placement situation can take longer than you think.

See if you can get some help from a home care service right now before you self-destruct. Even a couple of hours a week will give you time to see an attorney and find a MC facility. Ask questions on the forum if you need guidance; there are wonderful, experienced people here to help you.
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Im used to that. I'm a preschool teacher and I am helping take care of my MIL. What bothers me is the family drama. We have a family reunion Saturday with my MIL side of the family. We have tried to get them to visit all month long. They haven't. They expect to help tomorrow and I don't want their help.
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Bladee Oct 2024
I have a relative who shows up to “visit” with family and they are always dressed up clearly on on their way somewhere else….always show up empty handed and expect to be waited on while having no concept of the work that goes into caretaking.

I have finally started saying when are bad times to visit like first thing in the morning when you have had a sleepless night caring for someone who thinks it’s breakfast time at 3 am.
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That you have no life and that your aging almost even faster than who you are caring for. I have no time to ever catch up on sleep and wonder when will I have my life back and just as you said, start to feel horrible at the first sight of my wonderful father who did not choose to be so helpless.
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That I can't take my husband back to our normal life. So, I pour my energy into making each day seem like the best for him. Adapting constantly as needed and trying to see the world as he experiences it. My reward is a smile spreading across his face.
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To be honest, I am not sure where my head is somedays. My husband was diagnosed a few years ago. Over the past several years he has slipped a little at a time. Back in February he suffered a seizure and after I noticed a lot of change. My husband hasn't been able to work for over a year ( he was self employed) and I have stepped up to work has many jobs to pay the bills. For SSC doesn't pay enough to pay the bills. Just recently At one of his doctors appointments, The doctors advised that I need to get done work and stay home and take care of him. (I have been able to leave him with a list of todo's but noticed that things aren't getting done or not the way they should be) So when I get home from work I check the list and have to go over it or redo things. Our granddaughter moved in to help. She is home most of the day, there is only a few minutes between us that he is alone. Most days are good but there are those days that I just want to scream. I am now trying to find a way that I can stay home and take care of him. If there is anyone out there that has a list of places that I can contact that I can sign up to be his paid care giver PLEASE let me know.
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Reply to Yayay0906
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Being DUMPED on by non-caregiver family and loved ones. "Why don't you just give her the med I told you to"......."Why did'nt you keep the dog out of the room"............."Why don't you feed her this, every hour"............. The constant ? I am to blame by all the non-help.
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RoosterIam Oct 2024
Please try to ignore those that are callous enough to nitpick when they only offer on lip service, Pardon me but the middle finger seems apropos,
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My Mom does not have dementia and I'm truly thankful for that. However she is unable to walk now because of a medical condition and is therefore in a wheelchair. She needs assistance to stand and requires help with hygiene and toileting. Its amazing how much we take for granted everyday without realizing it as to having the ability to walk, stand and clean yourself. I love my Mom dearly and I do have a sister that shares taking care of Mom. But to answer the question, I hate the loss of my freedom in my retirement years. And I'm tired and sometimes get frustrated with the day to day stuff. My husband and I had plans for travel, spending quality time together, having fun. Caretaking makes it a little harder to get 'our' time, but we keep at it.
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b8ted2sink Oct 2024
After decades of long, hard work my spouse had done & my own work & over raising a family , I couldn't; wait for retirement! It finally came-but only because my husband could no longer work -due to a disease he came down with by age 50. Now I am caring for he & myself, house, home, & pets , etc.. most falls on me.
So -we didn't; travel much for awhile , until we more recently figured out how to Mobilize , despite his poor condition and inability to walk . With some help from a family member we got a hold of a wheelchair & set out on some adventures this past Summer-some quite far away. He did okay & the trips served as a good distraction for him. Now we are back home with no plans to go Out again or hit the road. We are thankful for our Home , what activities we Can do together -both inside and out . We spend time working on Hobbies at home of our own separate interest , doing some gardening, or going for walks nearby. We 've developed our own "schedule" -doing things in our Own time. We still have the "freedom" to go do things either just the 2 of us, or with family or friends. There are still a few favorite old activities of my husbands he can NOT do anymore , but we appreciate what we Can do .
Mainly, our Retirement didn't really go "by the book" but has instead taken many interesting twists and turns as we had to plan , at least our adventures, around a lot of Extra planning in order to make it Happen. Once we were able to check off what had become our "bucket list" we held a much deeper appreciation over times, that in the past, we had just taken for granted. I don't ever recall having so much Fun over past family vacations as we have had just in these past few years, despite the setbacks.
I hope you can find even little ways to enjoy the Moments with both your mom and your husband & achieve your dreams that may have to be rekindled , or , need be, completely morph into something, perhaps what you'd never imagined.
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What bothers me the most seems to change. Today, it’s conversations like this:

DH (frantically): what time is it? Why didn’t you get me up?
Me: I tried, at 8:00
8:00! Why so late?
I also tried at 7:00
You did not! What time is it now?
It’s 10:00
10:00?!? It can’t be! I never sleep until 10:00!
Honey, you often sleep until 10:00, especially when you’re up and dressed at 3:00 and I have to spend an hour trying to get you back to bed.
I don’t do that!
OK. You don’t do that.
Well, you’d better get me up earlier tomorrow.
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GrandmaMaria Oct 2024
God Bless you and prayers for you.
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Seeing my Lynnette, the love of my life slowly disappear before my eyes. I go to bed and cry nearly every night. I wake several times a night to check on her. I have a camera so I can watch her while she sleeps. She is under hospice care and the roller coaster ride rips me apart. She returns to me but is never as good as before. Thank you for allowing me my whine moment.
I sincerely feel for those that are "forced" into caring for parents, siblings whomever. God bless you caregivers. You truly are angels on earth. I wish you peace, comfort and knowledge everyone on the forum is with you in spirit.
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JanPeck123 Oct 2024
I pray for you and your wife. You are a wonderful husband.
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