* I would like them to know the loneliness and stress I feel.
* Feeling overwhelmed, alone, exhausted... but it can feel rewarding too.
* The loss of family members and friends.
* The frustration and hurt the lo (loved one) brings upon the whole family with their fabrications and delusions. Blaming and defaming even those who care for them.
* How disconnected you can actually become and feel from the Body because you have to withdraw from serving or even attending church. No one seemingly knowing or asking about things.
* The emotional strain it brings is the hardest for me. I have found very little joy in this journey so far.
* Caregivers need real support and real help.
* Yes, it's the loneliness....
* OMG - I started reading this and was like ‘there’s more of them?’!
* The overwhelming-ness of it all, searching for resources (lawyers, multiple doctors, etc) meanwhile saying slow goodbyes to the loved one/patient. Help can be in the form of meals, transportation, picking up small grocery items or just lending an ear to listen. The joys come from the laughs, the thank-yous, the epiphanies of knowing you made it another day.. and they’re probably ALIVE because of you. It’s earth-based miracles we’re working, every day. My love and respect to all caregivers ❤️
* The emotional toll, that we want to bring our loved ones to things like mass/services but that it can be very hard (think toddler in adult body) and that we hear the snide comments and we see the looks and it makes it that much harder to lead a "normal" lifestyle and bring loved with....and no we can’t just leave at home for the hour or so
* That when I miss church it's because I am serving God at home taking care of my LO (loved one) and how much I love a 5 minute call just to validate that I still matter to someone outside these 4 walls.
* That even if they don’t know how to react and deal with it its ok coz we don’t know too and learn new things everyday.
* They can be there for some adult conversations or come and for a coffee it helps a lot.
* Please bring Communion for my loved one - she can take it. It would be nice to at least have home visits. She was a regular church attender each week.
* Can they mow a lawn or trim the bushes for a woman who's caring for her disabled husband? Or a man who's overwhelmed bc he's caring for his wife and hasn't had time to do it?
* Can someone offer to take a guy to the barber college for a hair cut? (Give them A REAL lesson!) I could go on but... I stopped ;)
* Dementia is not contagious.
* Caregivers need MUCH respite. Send them a card, bring in some home cooked meals, send them a movie card, gift card for a massage, pick up a meal from a fast food restaurant, gift card to a book store. I've got an idea, how about just sitting and visiting with the caregiver. Remember, Rosalyn Carter said "There are only four kinds of people in the world. Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.
Telling me you are available any time to give me a little bit of respite - except when I call, or when I reply with specific requests and you say no - is an absolute waste of my time. I am frustrated with the abstract talk of "love your neighbor" that is just used as a feel-good moment because the reality of being there for your church neighbor is non-existent. I'm frustrated with churches that have programs for children, teens, singles and couples - but nothing for the elderly. I requested visits from my parents church - just send someone who can sit with my father for an hour so I can take a shower, or do a load of laundry, or just get outside to feel the sun and take a short walk - but nope, they can't do anything for their senior parishioners. After my father is gone, not one of his children will continue with that church. I'm not saying we are agnostic or anything - we will find a church that actually supports all their members and doesn't give lip service to the most challenging members, their senior parishioners. Can you tell I'm frustrated?? Thank you for sharing whatever you think is appropriate - but they do need to hear and acknowledge the tough stuff of how they might be failing.
* I think it's a never - ending cycle. i don't mean to be rude, but talk is cheap.
* One time, a friend called and asked me if i could go to kohl's with her. the timing was perfect. i didn't need anything from kohl's, but dad was doing ok, and it got me out of the house.
* The need for help
* The closeness between my mom and me has grown tremendously. We are still at a point that she knows me. I am extremely happy about that. We share things that we have never done before. I understand so much more how she came to be the mother that loved and cared for all of us as we grew up. She was poor growing up. She sacrificed a lot for us to be sure we had more. I can never do enough for her to show how much I love and appreciate her.
* How about how nice it would be for someone to help lift the burden. stop by with a pizza or a casserole. stop by with cleaning products and a few people to help out the house back in order.or offer to watch lo for a couple hrs and give movie passes!the need for help us here! we need the Body of Christ to recognize when one is sick the whole body is sick and there are a lot of us here sick and need to be lifted up! we need someone to stop by with a hug and to pray. we need to feel we are not alone! cuz we do!
* It is lonely and few believe/understand.
* We need HELP from others!
* Yes, we need a helping hand - like a casserole or someone to watch her while we go out - but I feel that's asking a lot from a church.
* I understand that people might truly not have the time to watch our LO, even for an hour, but you're so right ---- a casserole, soup, spaghetti........it certainly doesn't have to be anything expensive. even something as simple as cookies. my dad NEVER ate sweets, until his last few years. we're not asking for much, when all is said and done.
* Don’t ignore us. Don’t avert your eyes. Please don’t act like you don’t see us.
Watching someone fading away. Then looking in a mirror, and realizing they're taking you with them.
* It isn't for the faint of heart!
* Don' t just say "if you need anythng anything let me know." Actually do something, volunteer to give the caregiver a respite, even if it's only a few hours . Cook a meal and bring it over. Be a real friend.
* A couple hours of a break sometimes would be amazing.
* Our loved ones are still in need of love and respect by others in the church family.
* THEY NEED HELP.
* I haven't read all of the comments, so this might have already been mentioned. but, don't say anything to the effect of, "just let me know if you need anything." i don't tend to ask for help. please just do a little something. come visit me for a few minutes. make a pot of soup, or a nice salad, depending on the season (i love a big salad as a meal in hot weather.)
* One thing i will never forget about the time i cared for my dad --- my sister - in - law took dad to have some lab work done. i took a shower. it certainly wasn't the first shower i had taken, but it certainly was the FIRST MOST RELAXING shower i had taken (not yelling with the caps. they're just for emphasis.)
* That we, the caregivers, are already beginning the grieving process. It’s a process that continues even after our LO’s leave this earth. We need support along the way.
* Realize that telling someone to let you know when you can he’ll means that call will never be made.
* Call me and tell me you’ll be there in 30 minutes to sit with my LO for an hour so I can have 60 minutes to just do whatever.
* Just show up at my door with a meal that I can heat up for dinner tonight or put in the freezer for another time.
* Call me up and ask me how I am doing, what’s going on.
* That you don’t have the time to call, go out and socialize like you use to... not because you can’t or don’t want to make time but because it is hard to have time away. Encourage people to stay persistent and not just give up on caregivers because we don’t always have the chance to participate and interact like we use to.
* Tell them that the LO and the caregiver both need friends and family to get involved and not disappear. Even though they are losing their memory and normal everyday skills to do the things they once did that they can still enjoy a friendly face and conversation even though that conversation may not make sense to anyone but the patient. Never treat them like they aren't in the room and always include them in the conversation.
* Come over for a visit. Either the LO or caregiver or BOTH could use some encouragement from church!
* Help with small household projects; especially yard work and maintenance. * Sometimes just getting the basic things done in the house is overwhelming when Mom needs all my attention. Mom won't remember but visits from others means so much to her.
* Adult conversation, a person to person visit, caregivers need to know that even though we can't always be physically a part of the community, we stil need to feel that connection. To feel part of something, and that we matter to someone.
* We are lonely and tired. We need a break.
* It's hell
* Prayers for patience❤
* Emphasize that the caregivers are the one that suffers more - because they still have their mental and physical facilities and they are the ones that need MORE consideration and kindness than those whom they take care of.
Give us your help. Drop us a card, deliver us a meal, visit us. Just don’t pretend we don’t exist. We are tired, lonely, rejected and abused. We need love, care and compassion
* The disease is not contagious. When we get upset we are not upset with you just need someone to vent to, don't get angry
* Stop asking what they can do to help or saying if you need anything let me know I’m so sick of hearing both of these. Actions speak louder than words a lot of us won’t ask for help for whatever the reason. Come over sit w/our LO give us time to only have to think about ourselves, sleep, or soak in the tub even if it’s just an hour. Our LO are the ones suffering from this horrible disease but as caregivers we battle this disease too.
* Every time I walked into my mothers room I feel like I am walking on Holy ground. It is a privilege and the journey is sacred and though often difficult I am filled with so much love knowing that my mother will soon join my father. I cry every time I need to leave. I see her fear and I can’t comfort her.
* Caregivers have to include themselves in the caregiving scenario as well.
* Don’t tell me (the caregiver) to stay positive or try to put a positive spin on the situation. I’m grieving the loss of a loved one who is not dead yet. Just be there to listen and provide a hug from time to time.
* Don't say call if you need anything there is always a need to talk just to have someone who still talk and make sense out of what they are saying sorry just sad
* Instead of praying for us come give us a break!
* Just hearing so how are you doing?
* Don't ask what you can do just show up with a meal or to clean a bathroom.
Or give the caregiver a few hours off.
* Sometimes a break is PRICELESS 🌺❤
* Cook a meal. Sit and give the caregiver a break.
* That as much as we are caregivers, we need care ourselves. And sometimes, we just need to talk about anything other than our loved one - to keep a sense of normalcy.
* We truly give up our life and well being to take care of our loved ones and protect them and they don’t even know what or who we are sometimes.
* Also other people are afraid to socialize with Alzheimer’s/dementia patients.
* That we need help even if we do not admit it...A friendly face, a helping hand or just a phone call can go along way
* Unless you’ve lived it, it’s inexplicable, like living with or dealing with an addict. You love them unconditionally but they are absent; sometimes present as who they were, but mostly gone. It’s lonely and isolating. * Heartbreaking. People judge you for your decisions if you are not a constant martyr. A break. A meal. A visit. A freaking call from an old friend. It amazes me how many friends of my 58 year old husband are nonexistent . That hurts the hell out of me 💔❤️
* My husband has two cousins who live just in the next row behind us .it is a walk down a tarred path way. nope haven't seen , heard from . maybe they think it is like the chicken pox , contagious . makes me so angry !
* Omg that’s how i feel nobody calls me so i dont go out
* Fellowship for our love one! Its not contagious. Even just a post card or send some food over. their time
* That is so very true
* That even though we get exhausted, we love our L/O BUT we also need people to talk with a phone call a drop by visit a face chat and lets talk about everything but what is happening to our L/O . we need normal . good luck with your talk .
* Here’s my take:
1. I am not paid. I take care of my lo and pay his expenses out of my money. I am not on any assistance or charity. I am not living off his money. He has none. So no nasty comments regarding money. It’s no ones business.
2. My lo has Alzheimer’s. He is not mentally ill, so please don’t waste my time telling me about the great article on bipolar disorder or nutritional supplements you read, not the same.
3. I’m exhausted. I’m working full time and taking care of my lo by myself. So please don’t point out to me that I look tired. I know I do.
4. I’m stressed about money, how I’m going to handle this as he gets worse, and what this is doing to my physical and mental health.
5. I know my lo takes a long time picking his meal at a restaurant or walking thru stores, but while you get to go out and do what you want he gets 1 or 2 trips out a week and it’s a big deal to him. So don’t say nasty things, show obvious agitation, run up behind us or get aggressive.
6. Please STOP telling me I need to take care of myself too. I hate this!!! I hear it all the time, but no one ever offers to help. So when is this me time going to take place?
7. Don’t act superior. This could very well happen to you. So before you tell me how much better you would be handling this and how you’d do it differently, think if your suggestions are even possible, because most of the time they’re stupid.
8. I truly love my lo. Seeing him like this kills me just a little more each day. The man I married is gone and a stranger is wearing his face. This stranger does not love me. He hates me. He curses at me and occasionally gets physical. Then he has a good day and he’s my sweet husband again and I’m devastated. This is a roller coaster that has gone on for almost 4 years and will continue for I don’t know how long. My heart is broken.
9. I’m 55 and my husband is 61. We’re good people. We raised 2 beautiful daughters. We paid our bills and were responsible. These were supposed to be our golden years. Our futures were stolen and of course I’m upset.
* I can never be honest. I hold my tongue, smile, and act like everything is ok because dealing with their ignorance is just too exhausting.
* See about the church “adopting” a caregiver and call her , spend time do somthihg helpful for her to help her love one. Get their names, address and birthdates. Mail them a card for special days, perhaps with a gift card for a movie , restaurant a meal . Something to make them smile!
* I spend so much if my time, of myself, giving to Dad, and it is an honor am proud to have. But I need care too. My heart gets so empty, I need some care as well, but I will never ask for it.
* I know exactly how you feel and no, I won't ask either . if they can't tell we need then to me they don't care either .
* The caregivers need time out if only a few hours a day.
* To reach out to help. Grab things for you st the grocery store, sit with LO for a couple of hours to give you a break. Or an hour so you can take a shower In peace, etc.
* That we are all in fact living in the madness of this disease hoping it doesn’t drive us mad. Please let them know that
* Please pray for us.
* Do not give us platitudes (we know those!)
* Please speak to my LO - even though they may not respond appropriately (or not respond at all)
* If you really care, ask me twice how I am (first time I'll give a short response, 2nd time means you actually care)
* Don't tell me to call you if I need anything. That can be overwhelming. Instead, offer to ____ (fill in the blank). OR, let me know that you're available next Tuesday and offer to come over, go shopping, clean my toilets, whatever.
* Take my LO out for coffee or lunch (it's great if men reach out to my hubby; but if I were ill, it would be great if a woman would reach out to me)
* Don't stare at us during church (it's already hard enough to get there)
* If I want to be involved in ministry, please offer to sit w/my LO during service so I don't have to worry about him
* If he asks for a ride home - please don't take him unless you check with me first!
* Call before you come by, but please come by!
* Please pray for us!! (And, then, pray some more!!!)
* When it becomes too difficult to bring our LO to church, it would be great if someone would come sit with them on a Sunday so we can actually go to church - even on a rotation so that they give up one Sunday every few months, but so that we can get to church at least a couple of times a month.
* If we don't seem grateful, please give us grace. We may be too exhausted to show it, but we appreciate kindness.
* We want churches to more accommodating to people w/ dementia. Don’t send us CDs of worship services make the church more welcoming and educate parishioners.I used to take Mom to church with me some. The other members were friendly but we visited one church and they were extremely uncomfortable around Mom which was surprising since many of the members were older than she.
* That my heart is broken and I’ve never felt this much heartache but I still smile when someone says “how are you”...mostly as a courtesy for them because I assume they don’t really want to know how I feel.
sad, but so true
* If you sit with my loved one, please don't offer her a cup of coffee or bowl of hot soup. She doesn't remember to check the temperature first and make take a full sip or gulp because she forgot what "hot" felt like in her mouth or on her lips.
* VISITS FROM CHURCH mean a lot. Please dont forget caregiver and patient. * Offer to sit if just for 30 min....
* He is my husband of 52 years, he has never been a good husband but he was always a good provider for me and our sons, who BTW abandoned us, so I do this on my own.
* That I am grieving the loss of my partner, while he is still alive. my love has become my dependent child
* Yes! My mother is already gone!!!
* Just how much a card or phone call means. Also it feels good to be included or asked even when I can’t go. Otherwise I feel invisible or forgotten.
* Offer to do dishes, clean the bathroom, wash clothes... bring an easy to eat meal. Offer a free haircut to both of you or a shamooo and style. Offer caregiver free massage. Bring briefs, chapsticks, hard candy, magazines, toliet paper. Dog or cat food... stuff you cant buy with foodstamps, in case you get foodstamps. A roll of stamps and stationary so you can write her friends and family who seem to forget to write. A newspaper subscription.... any of these would be nice.
* Please listen when we vent without judgment. “Oh you just need more faith. With God all things are possible”. I KNOW. I AM JUST TIRED AND STRESSED. I JUST NEED TO TALK TO SOMEONE WHO UNDERSTANDS ME. Then you can pray over me and let me cry. I’m not weak. I trust God. I’m overwhelmed and want to run away.
* Some people talk extra loud... my mom has Alzheimer's, not hard of hearing....
* To not disappear. My parents were really active in their church for years. Mom had vascular dementia and lost her ability to speak. One pastor did come for communion occasionally. She was still inside. A visit. A hand hold.
* Dad has Alzheimer’s. He gets the occasional communion. Flowers occasionally. On the prayer list. Just seems like they become forgotten.
* Provide a meal. If you don’t cook, find out the caregiver’s favorite restaurant or cuisine and bring a meal in.
* Remember, we are taking care of two. Many of us work and take care of our loved one. Exhaustion is commonplace. Burning the candle at both ends every day.
* Thoughts and prayers are not enough. We need real help!
* I always had such a hard time leaving my Mom, i would get to the elevator and wave goodbye, and fall apart, but I could never not look back knowing it may be the last time I see her and she would know me. Keep looking back.its worth all the tears,
* When I do an educational talk, I always try to stress to my audience that when a caregiver is asked, are you ok, can I do anything for you? We lie: “No I’m not ok, no we are fine, we don’t need a thing.”
* What we actually need is to occasionally be kidnapped and to escape.
* I think that depends on the individual, and that the best thing to do before calling or sending a card would be to ask the primary caregiver's thoughts/opinion.
* I would like for the world to comprehend...we would appreciate support ...care...patience aand understanding....we r not dumb idiots......like cancer sufferers we have issues...try nd picture wt u wld like happening to you. .with you and for you with compassion. .understanding and tolerance
* The help doesn't have to be anything major. bring a simple, inexpensive meal. grab something we need at the grocery store. pick up some medicine from the pharmacy.........
* So many days just having someone do one chore no matter how small is a huge relief.
* Please don't tell me that you understand exactly what I am going through and how I feel. I consciously gave up my life and my business to move in with my mom 5.5 years ago. It is my 24/7 job and the toughest one I have ever had. Unless you have walked in my shoes, you don't have a clue.
* I have walked in your shoes and now wearing them
* Inclusion in church life. We had a fantastic talk from a London borough visiting Pastor on mental health and he stressed how loneliness is the biggest problem for anyone with MH. This is why many carers suffer. I suffer with anxiety / depression myself and I could relate to every word. Our church is amazing at befriending / inclusion and since I found them in December, I feel loved outside the family unit. It makes a MASSIVE difference. Isolation is definately satan sent.
* To pray for us to have the strength to take care of our lo and for the church family to reach out to the caregiver. Offer to sit with lo or coordinate with other to sit and take the caregiver out to lunch.
* If known well by the patient then help especially through the night.
* I read on posts a lot about guilt. Guilt if we loose our patience, guilt for considering memory care, for wanting them to pass, for disliking our siblings who dont help or even resenting the lo we take care of.
* Tell them that, unlike every other situation in life, this is about things going backwards, not forwards, and that you learn to cherish the moment that you have, not the “profile” you want to be or everyone else to be. This is ultimately about dying and only on focusing on the moment, it can be enriching.
* Each situation is so different so just reach out to us and ask... Ask if you can visit and what the best time to visit is. Ask what a favorite meal would be and drop it by. Ask if we need anyone to run some errands, sometimes it is so hard to do when you can leave our LO home but hard to get them out or ask if they can sit for just a bit so we can run errands. Offer to come read to our LO is they like reading (nothing make my grandma happier than her pastor coming to read to her and sing hymns for her) just don’t forget about us. When we do make it to church. Speak to our LO but but don’t ask questions. Don’t hug our LOs ibecause that seems to stress them but most of us could use a hug. Ask how we are doing but then let us tell you, we really need to vent sometimes. This can be such a lonely world. Most of all please keep us in your prayers.
* Ask about us, too. Everyone asks how mom’s doing, which is great of course. The handful of times (in 8 years) that someone has asked me how I’m doing has resulted in a flash-outburst of tears - b/c no one ever asks about me. Of course I get that “this” isn’t about me - but the toughest part about being strong (b/c only the strong step up to this challenge), is that everyone thinks we’re invincible. Well, we ARE - on the outside. Inside is a whole other story. We’re lonely and isolated. We need love and TLC too. 💜💜
* Yes, yes indeed! Mostly my church has been great and caring, but ask me how I am or just give me a hug instead of asking first or only about my wife.
* If you say, "Please call if there is anything I can do" - mean it. Help with even simple things such as how to set up passwords, technology, hang curtain rods, etc.
* If someone feels strange sitting with your loved one so that you can do some errands, do the errands for you. If that is too much, make a date to come and help around the house. If people are like me, they never catch up. I can't climb like I used to do, nor can I do some of the jobs he did. The gift of nonjudgemental time is wonderful.
* Instead of saying can I bring a meal.... many of us will claim to be ok... say we are bringing a meal, what is the best day? Are there any diet restrictions we need to know about? (Would be frustrating to get a meal that we couldn’t eat due to diet restrictions or preferences)
* Help... help of any kind. A visit that can grant us 30-minutes to take a walk or catch up; time is so valuable for most, if not all of us.
* The toughest job and emotional experience one can ever have and there is no cure.no hope...if you dont remain positive you will fade ..just as the one you are caring for..to smile is hard..the love of your life is disappearing.. often daily and you are dying inside too! No words can describe your heart breaking .your future together gone!
* I Think the hardest part is that everyone abandons the love one except the care giver. They are still there going on with their life and going on like nothing changed, The loved one like my mom has limited visits, and phone calls.
* For those who want to help ... don’t over promise and then under deliver.
* Prayers are great and appreciated but action and assistance is what is needed.
* I have a friend who has a wonderful dog. She will sometimes drop her off for us to babysit for a couple of hours. My hubby really enjoys her visits then my friend will stay for an hour so I have a few minutes to relax.
Isolation and separation from the body when it because to difficult to attend.
* One thing that would extend being able to fellowship is family friendly bathrooms.
* Another thing would be to have good visitation program in place. I hear from many (even long time members) that the church body forgot about them all together.
* Having a live or even recorded stream of service is a way of being connected as well as having a social media presence so they can at least have a virtual connection.
* That things are not always as they seem.
* Hubby retired from ministry. One church we served we had everyone write down name, address, phone and name and number of next of kin or person to call in an emergency. We kept in a file in his study. 3 times we had to call ambulance for unresponsive members. It was a life saver... people write this info down, post in obvious places in your home.
* Recommend watching Teepa Snow's free videos on You Tube--she clearly explains what is happening in the dying brain and gives many practical ways of coping.
* How incredibly lonely you feel, how your life stops when your loved one can no longer be left alone and they dont qualify for home healthcare. How horrible you feel for not wanting it to go on any longer. I love my Dad I am an only child and when my Dad started showing signs my mom left said she cant do this oh dud I mention she also took him for everything and got him to sign it because he did not understand and she refused to take him to the doctor for a diagnosis.
* Her “friends” ALL disappeared. When they see me they smile, ask how she is, shake their head in sympathy, and then scamper away.
* That they need breaks from the madness
* RESPITE...its called respite...for the care-giver. YES its true, care givers are people too and along with that big heart and non stop energy we need YOU families to realize that it is not impossible to spend an hour with your loved one. Give the Care giver a BREAK.
* I would like them to remember this, "Religion that God our Father accepts as pure and faultless is this: to look after widows in their distress." James 5:27, NIV. I would absolutely talk about ways to connect, what to say. I think that oftentimes people disappear because they don't know what to say. Let them know that a person's soul is still there even when the brain has long since stopped working properly. They can minister to their soul just by being quietly present.
* I agree..why do they think they need to entertain a person?? Just be the friend, relative you have always been. It's ok and I love you....do you remember when we.... and that will start a whole new experience.
* Yes, and of their memory is really bad, beginning with “I remember when we...” instead of “Do you remember...” . Looking at photos can be fun if their vision is good.
* The sadness of still having your loved one who is a stranger.
* To come visit more and not ask you to bring your LO to church because of them being confused.
* Please stop by for a visit.
* I agree visit! It is a very lonely existence. Find somebody that can make a phone call to check up on people that can no longer get out to church!
* Yes....I believe all most all us are so lonely....we don't have a life anymore....but then you think you can do it all....then you realize you can't.....and your Love one get lonely also...it's like No One comes around when they know they has this ...so sad.........the Joy is when you can see your Loved One SMILE, and have a good day... anything that can Clam them down... The Joy when they can still tell you that they Love you.....and also when they can still tell you about their pass.....to me that's the Joy....but most people do not know how MUCH WE CRY..... EVERYDAY THE SAME THING.....AND YOU SEE YOUR LOVE ONE LEAVING YOU EVERYDAY...
so true, we lose them so many times before the final goodbye. mine gained his wings nov ll, 2018
* Any time to share with LO would be amazing. Come for coffee. Take for a drive, walk. Make a phone call.
* Patience, love and make sure the caregivers get help when needed and dont be afraid to help. The LO is still in need of affection and friendship, even on their worse days.
* My grandma w alz recently underwent breast cancer surgery (she is doing great 💗) however, w this new diagnosis and her surgery ppl from my parents church have been bringing by food and omg what a blessing! One less thing for us caregivers to do. Its been so nice. And so much yummy food. So I'd say set a rotation for ppl to bring meals, if only once a month or something
* Patients love to have visitors, but when you say you are going to visit someone...do it! When visiting someone with D/AL do not take to heart what they say. They can be very cruel and say off the wall things. Some are real, some are far from the truth!
* To be there for them. Bring communion to our lo. Offer daily prayer. Give a donation sometime. Especially during holidays and birthdays. Call, text to see how the person is doing. It’s lonely caring for a lo. Don’t disappear from that persons life.
* The joy when someone, anyone, calls to say, "I want to take your loved one out for awhile (for breakfast, an ice cream cone, to the lake, WHATEVER) tomorrow. What time would work best for you? (Because no one ever did that for me). The one thing NOT to say?--just let me know if you need anything (because you never will).
* I would want then to know that this is a time when we need our friends and family the most. Yet this is the time they desert us and act like we no longer exist. My mom’s friends simply abandoned her, some lived within a few blocks of her care home, yet never visited her once in almost three years. But there they were, big as could be, at her funeral , crying and saying what a good person she was. I could barely stand to look at them, let alone let them give me a hug. They have no idea how much hurt they caused.
* Some times it is the simple things that matter the most! When my husband was so sick that I could not leave him (almost a year) the worse thing I had trouble getting help with was taking off the trash. Some times a small treat basket is a huge pick-me-up. Does not take anything fancy.
* Let the church know that caregivers needs. Caregivers don't always feel like preparing food, just a call to say, don't cook today, I'm going to stop at your favorite restaurant and bring food for you to day. Caregivers don't get out often, here's a gift card go get your nail or hair done. Caregivers sometimes need to run errands,Just a call to ask if you need me to run some errands for you today. A just because we care package. Repaired around the house example leaking faucet. Lawn mowed. A caregiver day out.
* This disease not only makes the memory leave.But their personality is gone way before,Some get scared.Other's become violent.We as caregivers feel tired and alone.It will be nice to have more help.
* It’s lonely.
* We all need a break even if someone can only spare a few minutes. We could go to the bathroom or take a shower or 40 winks anything just not to worry about what they're doing for a minute or two.
* It's usually just one person that steps up to take on the role of caregiver, when there are usually multiple siblings or children. Everyone should do their part. Help. Help. Help. If they say, "I can't because of my job. Let them know there Is the family leave act that says they can! As someone said earlier just offering to sit with them for a couple of hours to get a break is a tremendous help.
* That the church could reach out and help us - instead they forget about us except when they need a monetary offering!! Not one minister or church member has called, stopped by or even offered a meal to us but they will help homeless persons (open the gym on cold nights) or send money to third world countries!!
* To be a little more informed on the behaviour of those with the disease and show more support to both parties. A little help would be nice even just a chat and a cup of coffee/tea. Just so the carer can let their feelings out. Above all not to judge as if you have not experienced it then you really have no idea.
* Ugh.....churches. Don't even get me started.
* I’m so happy that you are given the opportunity to speak on this. I’m going to jot down a few things-I know it will be jumbled and may sound as if I’m rambling, but I’m in a hurry and need to rush through it. In my opinion, what is important is that the pastor and the congregation show love and support to the LO and the caregivers. I have seen many churches fail when in comes to showing love to their own members-and to the elderly in particular. They will collect money for missions, or for special projects, or they will build up big children programs-and there is nothing wrong with that. But so many times, the person sitting right next to you in the pew have needs that are just as great. For all of their lives my parents attended church, and raised my brothers and I up in the church. They visited the sick. Took food to families that were struggling- including family members. They were the first to volunteer at the church or school or neighborhood, to help with bible school, or cub scouts, or to coach ball teams. They gave money to people when they were short themselves. And my mom especially within recent years would spend time with the elderly in our family. She would take them little treats and just sit and talk. Now—my mom has been in a facility for a little over a year, and is in stage 6-7 Alzheimer’s and has been placed on hospice. My dad-after 63 years of marriage is living on his own. He calls himself a married single man. Aside from my brothers and myself, my parents have basically been deserted. None of my cousins (who’s mothers my mom spent so much time comforting in their older age) have visited either of my parents. The pastor of the church visited my mom ONCE-that was about 10 months ago. He NEVER visited my dad. No one else from the church has ever visited either of them. Or called to check on them. And all of their “small group” church friends have gone by the wayside. And WHAT is the purpose of the small groups again? My parents had been attending this particular church for about 13 years. So what would I ask that you convey to the pastor and the members...? I would like for you to say this—Please don’t forget to show “love” to those in your congregation. Don’t forget those who came before you. what about taking communion to a shut in? or sitting with someone and reading them a few passages from the Bible? or singing them a song? Or taking them a special treat? or holding their hand? or sitting with a LO for an hour so a caretaker can run down the street for some quiet time and a cup of coffee? . Or if a caregiver is alone because their LO is now in a facility, what about getting a few people together and taking them to lunch, or visiting them with a bag of cookies. The possibilities are endless. I know I’m rambling on here-but I have been frustrated about this for awhile now—and I’m very sad and disappointed in “people”-and actually more by the people in the church then by my own family members—because in my heart I hold them to a higher standard and I believe the attributes that the church should represent and display to the world are sorely lacking. Love and peace everyone.
* Similar story here. My mother has been an active member of her church for over 50 years but now has dementia. She is in a nursing home as I cannot physically take care of her. No one from the church has bothered to come visit her or even send a card. I am so disappointed in them.
* I understand that feeling people don’t know how to act, what to say. We (caregivers and families) must educate the public. This disease and other dementias will affect every family sooner or later.
* Talk about the good and the bad, but leave out the ugly. Use humor to share your journey. 💜🙏💜
* You said exactly what we are all saying...we were all once very active in our churches and are now abandoned 😢
* I couldn't have said it any better!! May God bless you.
* Help. Support. A call or visit. Offer to give caregiver a break. Stay with LO while they go out to do something, errands or something fun. Pick up something for them. Bring them dinner. Share information or resources on the disease, VA help or social services.
* Cook potluck and bring over
* Learn about the disease.
* I wish the folks in my church had a clue. There is heartache, guilt and exhaustion when caring for and loosing a spouse. We could really use more than prayer and Get Well Soon cards. They just don’t know. 💜
And its up to all of us to educate them. Start talking in a positive vibe and keep going with humor. This includes doctors, hospitals, etc. 🙏🙏🙏
* Have a room for where folks with dementia or alzheimer's can sit and listen, fidget, or wander around while they listen to the sermon. Their caregivers can either stay with them or sit in the sanctuary knowing their loved one is being watched and cared for while they worship in peace. I know my mom missed being in church and my father did too. One of the last times my father was out of the house, we visited a church near my parent's home (their previous church had disbanded). Even though he was largely non-communicative, he sang the hymns! I sat there in awe and just cried. It is one of my sweetest memories.
* How sweet is that memory! My dad was the same with hymns. He had a hard time with talking the last couple years but he could sing those hymns. <3
* My church has been very kind. But it is a big church. Anyway asking about the loved one affected. Visiting them. A meal once in a while would be nice. Telling people when you remember to pray.
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