The Question Every Caregiver Deserves "“ But Seldom Hears

Four words to warm a caregiver's heart"¦and what you can try if nobody pipes up.


Last updated: October 03, 2011
3D Character and Question Mark

Quick: When's the last time somebody asked you, "How are you doing?"

Emphasis on the "you."

Not lately? Not surprising.

People don't get involved in caregiving for the glory or the thanks. We do it because it's a job that needs to be done. We don't even think of it as a "job." It's part and parcel of loving someone, of feeling duty-bound. The person needing our care is the star attraction, after all, the focus of attention.

But wouldn't it be nice if you, the caregiver, weren't completely invisible? Wouldn't be a relief if the rest of your family paused from going about their merry way to inquire about your health, your sleep, your well being?

There are many reasons friends and family fail to ask caregivers how they're doing. (I'm not saying they're good reasons, only that these are possible motivations for keeping mum). For example:

  • Lack of comprehension: They just don't fully understand the time and strain involved.

  • Out of sight, out of mind: You've solved the problem, and that's all they care to know.

  • Selfish obliviousness: They're too wrapped up in their own busy lives.

  • Reading you wrong: Because some caregivers tend to put on a happy face or a complaint-free stiff upper lip, they thus don't appear needy.

  • Making like an ostrich: They don't want to know, for fear they'd be expected to step up.

  • Plain thoughtless rudeness. (Sometimes, there's no other excuse.)

What can you do about it?

It's really hard to kick-start empathy and consideration in other adults. Some people swear by speaking up: "You know, I'm really stressed myself caring for Dad; would you mind checking in on me, not just him, once a week?" Or wrap it in humor: "Hey! Why doesn't anybody ever ask if I'm better or going to need to go to the hospital? If I did you'd all be in trouble!" Praise the occasions your welfare is mentioned; the positive reinforcement is useful and if others are in earshot, so much the better.

Have you ever felt taken for granted? Have you been able to make yourself and your needs more visible to friends and family? Tell me what works. Or just tell me, truly, "How are you doing?"

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54 Comments So Far. Add Your Wisdom.

about 1 year ago

It is certainly a relief! It is 2 years now since my husband suffered a stroke that left him incontinent and not using left hand and leg! I was and I AM in an INTERNATIONAL VOLUNTEER JOB. I opted to organise for home-based care provider who lived in and my eldest son and family also came to stay. it was short term arrangements and worked well because at the time our oldest son was "BETWEEN JOBS AS THE AMERICANS SAY" I AM GLAD THIS ARRANGEMENT WORKED WELL AND my husband MADE GREAT PROGRESS! in April 2012, our oldest got a job away from Nairobi and the change needed my attention! Evaluating progress of recovery was in favour of my husband travel with m from Kenya to live with me in Malawi. We opted for a lady to help during the day time and I take up preparing breakfast and dinner! It is actually that I have to jobs each 24hours for 7 days a week! the weekend are more taken up with laundry and shopping! I need 8 days a week to have a day of rest and it is taking toll on my head and heart! Last weekend I had bad outburst with myself and asked so many questions about what I think I AM doing trying to be a HERO woman! It is tiresome and I realise it is as if I live with a child in my house and not an adult! I have to do absolutely everything for his needs, but who cares how I AM doing? What on earth AM I to do if this is like the rest of my life! Our life together is 43 years and counting...... and this 2 yrs seem to be the most longest of all time! I AM grateful for the posts I read here because I had struggle to bless and embrace this as part of the low and down about life changes! My emotions are cracked and bristle, I would like to run away from it all and let someone replace me till walls of anger come down all around my heart! It is a lonely planet even when I can see the full moon out of the bedroom window at night! I would like to dream of waltzing on the dance-floor as if there is no tomorrow! Here he is learning to walk again without walking aid! There is hope on PLANET HEROMAKER after all!


over 1 year ago

i just found yall. i didnot realze how badly i need to vent. my daughter is totaly disabled since 2007. she can not walk,talk,eat, she trys to sip a little water but cant swollow well enough to get any down . she does not give up.she has been living with me sinse 2009. my health is holding steady for now .her dr. told me 4 yrs. ago to find a nursing home for her as she will never be better and as time goes on it will get harder to care for her. God sent a wonder woman to help me and befriend my daughter. i keep getting told "We do not have a room for her" for 2 years. some times i have to just leave the house and go for a walk to get some me time. thank you for listening oxox


over 2 years ago

Caregiving has confirmed for me the adage "the road to hell is paved with good intentions". Last month, four years into full-time caring for my mother, I got chest pains and extremely high blood pressure and my doctor recommended going to emergency. I found someone from the agency to stay with my mother and left a message with my brother. Thankfully, I was released from hospital 6 hours later with ulcer medication. My brother did not return the call for a week. It drove home the point that apart from 2 virtual friends and 2 uninterested siblings (my sister lives on another continent), I walk this road alone. The helpers from social services will disappear as by enchantment the day my mother passes away. Yet I still believe that I am doing what I must do, even though it is increasingly hard to project into a relatively positive aftermath. I have long passed the stage where I wished for someone to ask "and how are YOU doing?"


over 2 years ago

I am so glad I found this site! I was my husband's caregiver and have never felt so alone-- I come from a huge family, and my husband had 1 sister and only his mother alive--and it was day in and day out only me--when the end came, still no one came! My husband was the nicest man created, and was as unselfish beyond belief, and yet no one came-- we live 2 1/2 hours from the family, and I did my best to hold down a ful-time job while taking care of him--I visited him every single day in the nursing home--both on my way to and from work--I stayed till they kicked me out each night-- I am not looking for any sort of praise--that is what you are suppose to do! I was brought up that family takes care of family, so it was heart breaking to have to put him in the nursing home- We had no children, so I was truly alone- and had absoluetly no one to turn to--and having never gone thru this before, I was not at all prepared. To this moment I am wracked with guilt that I should have done better-- my husband looked at me each day and questioned if I was getting enough sleep, and seemed only to be concerned about me--I tried so hard to be brave and just handle things, and the guilt is just overwhelming. I should have done better, I should have done more and now it is too late--there is no fixing aynything.


over 2 years ago

I left a post on another comment but will leave one here too because i have found so may people that can understand me and i know i am not alone. here, no one is INVISIBLE! I feel like i am invisible, but i know that here, i am seen and heard. I am sorry for the thank you's and the i love you's and the i appreciate you's that have not been said. but I am saying THANK YOU. I APPRECIATE YOU and you are IMPORTANT. I wish my brothers would come by (2 live near by and 1 lives out of state, so he does not count), but a call to see if my mother is ok, or if i am ok would be nice. A visit would be good too! But they say they are busy...i don't understand their behaviors. Families are supposed to be here for one another, but i guess it's true...the saying that when bad things happen to families, it either makes them or breaks them. Mine is broken,. I feel like an only child when I really have 3 brothers. What i am afraid of is that when the time comes, in the end, and they come by...i might accidentally say...you weren't here before...why are you here now? I know that would be rude....and my mom would not want that, but it is my anger thinking in my tired brain and body. thanks for listening. Thank you or EVERYTHING that YOU do! You are AWESOME...


over 2 years ago

Hello Anonymous, Thank you for sharing some of your caregiving challenges with us. Consider joining our online Alzheimer's support group http://www.caring.com/alzheimers-support. Caregivers, like you, share challenges, support and advice about their caregiving journey on a daily bases. You may also find our "Caregiver Confessions" series with Leeza Gibbons to be very helpful in your journey: http://www.caring.com/articles/caregiver-confessions-resent-being-a-caregiver If you ever find yourself seeking additional caregiving help, the Senior Living Directory is a great place to search for professional caregivers in your area: www.caring.com/local We are very excited you are a part of our community and hope that you may find many of the resources you need as you take care of your loved ones. Kind regards, Sho from the Caring.com Community Team


Anonymous said over 2 years ago

I am SOOO glad I found this site. I have been a caregiver since 1997 when my dad became ill and my mom wasn't caring for him the way he needed cared for. I was 37 when I took both my mom and dad in to live with us. I have a husband and three children. At that time, my kids were 11, 8, and 7. They experienced very much at a young age, from caregiving, to illness, to my dad dying on our couch and the kids finding him (my husband was home with them at the time) while I was at the hospital with my mother who was very ill at the same time. My dad passed away in 1999. My mom continued to stay with us. In 2001, my father in law became ill (Alzheimers). He moved in with us along with my mom still being there. she had/has absolutely no patience with anyone or anything, even though when someone is around, she acts like the sweetest person on earth. she is wicked, degrading,, belittling.......and she only does this to my husband and I. Neither of us can do any right by her. but then there's my brother who was a drug addict (and by the way, I took him in on 3 separate occasions after prison, the latter being for over a year) and my sister who helps by taking her to doctors appt. But when it comes down to it, im the primary caregiver (the youngest of 3 children) and it gets very stressful. she is still able to do some ADLs on her own but cannot live alone. I keep reverting back to my childhood....when (and this may sound petty) my brother and sister used to get dressed up, go to church with my mom and I'd have to stay home. There are pictures of all of them together and I even remember being told to stay on the sideline while they took the pics. i remember my mom always telling me i was an accident.....she didn't want another child. and at age 52 it STILL bothers me. why do i keep hanging onto that??? did if affect me that deeply or am i just a big fricking baby?? there are many other things i can recall from childhood. a few years back when my mom and i got into an argument, i mentioned things from my childhood. she called ME crazy, said she was never like that, etc. And to this day, she continues to put the blame of EVERYTHING on me....regardless of what it is and i mean REGARDLESS. it gets to the point where i can't stand to have her in my home. the only time i get a break and have her go stay elsewhere is when i reach my breaking point and pretty much kick her out. it should never happen like that. then i sit here, feel guilty, wonder why i am like i am...... am i wrong for feeling like i do. before she left to go to my sisters she told me "and when I die I don't want you to say 'oh how sweet she was' and how i miss her....etc. and ya know what, I love my mom but i don't like her or the way she is. will i miss her when she is gone? YES. will i ever get over these feelings she never truly even loved me? NO, i probably won't. I don't remember a time when she actually showed any love or affection. its strange. at 52 my life just seems soooo f***** up. i guess i'll live the rest of my life with a feeling of guilt, when there is no reason for me to feel quilty; a feeling of being unloved and unwanted as told by my mom.......i don't know. anyone have any suggestions? I am rambling now and feel like i'm losing my mind.


over 2 years ago

Having been a caregiver for over 8 years for my parents and my FIL as well as raising 6 kids, I know the toll caregiving can take on you. Thankfully, it all fell apart about 5 years ago, and I was able to rebuild a healthy mental lifestyle, with priorities in order and the muscles in my face that said "no" in good working condition. It is all about balance, and the wisdom to know when the balance begins to shift rather than a reaction when it is falling of the scale. Honestly, some people are nurturers, and the other 80% of the population is incapable of altering their lifestyles to accommodate the needs of others. Reality. If family members are slacking, let them pony up for a a hired caregiver to come in. Hopefully, the one needing care has some assets that can be used to pay for respite care if no other family is able. When we sign up to care for someone, it rarely includes a partnership from others. Caregivers will ultimate have the gift of no regrets about the time they sacrificed and the blessings of giving someone the best quality of life possible in their golden or waning years. Trust me, guys. We win in the end. Consider it living your purpose with eternal rewards. Blessings to all.


over 2 years ago

Bless you still alive. I wish you a very good 2012.


over 2 years ago

I am a care receiver, but still mentally here. I made my caregiver a shawl for Christmas, and a sincere thank you. She said she had never once even gotten a Christmas card from a client before. I cried for her. The selflessness and kindness have got to take their toll. It is okay to say NO to unreasonable demands from those you care for. I have MS, but with anyone receiving care, their should be boundaries, and caregicers should expect to be treated with courtesy. I know dementia and ALZ can make people cranky, but on behalf of all, I saw Thank you, thank you, thank you. And my caregiver signed me up to get my books in the mail and electronically-coolest thing ever. A busy mind is a happy mind.


over 2 years ago

I feel like I know you all - our feelings so similar. I have been caregiving for my dad for 6 years since my mom died - in his home then a move to assisted living - and a year ago my husband was diagnosed with Early Onset Alzheimer's. I am squashed between the two of them right now and my personal resources for caregiving have been depleted by the years with my dad and now my husband needs me. He lost his job 5 years before he wanted to retire. The legal and financial matters are pretty overwheming. Anyway, I learned the heard way that I HAVE to put myself first as last week I ended up in the ER under anxiety and stress. Now it is all about deep breathing, making time for me, a bit of help from prescription medication, no drinking alcohol, asking for help, exercise, good food, taking it one step at a time. I don't want to kill myself over this.


almost 3 years ago

Sunnysouth, Did the doctor help you? People do not know what we go though. Please take care.


almost 3 years ago

I went to the doctor and told him I was under stress. He didn't even ask why. So the next time, I told him I was a caregiver. He just kept typing. I have relatives who call and tell me THEIR problems. If I mention that I am worn out, they say 'well, hang in there.' What do they think I'm doing?! People ask about everyone else but me. It's like only the elderly have health problems - not true. Yes, I agree with the article...it would be nice to know someone actually cared about how you were doing. I can think of several people admitted to the hospital and they are caregivers. They put others health before their own.


almost 3 years ago

Amen Arwen-I have written a few posts at memoryofmom.com about experiences we had with mom. The dementia patient becomes much like a child and one way we coped is learning to laugh at some of the things mom did. We did not laugh at her, but some of the things they do is funny. One example was mother started having trouble dressing herslf and sometimes would have things on backwards or shall I say, layers out of order. Crazy maybe, but for me, I saw humor in it just as I did when my kids were little and struggled with dressing themselves. Mom often laughed at herself when she realized what she did.


almost 3 years ago

Even though I'm a nurse, I'm really new at this kind of caregiving - much more personal and demanding in ways you can't know until you're living it. I took a leave of absence to care for mom (and dad) in the weeks before she died of cancer this past February. From the moment she passed, I had to assume care of my father. It has been a rough road - not without its lighter moments - laughter does help. But life has gone on for all of us kids and dad, and I've barely had time to grieve let alone to adjust to my new life. Life changed for all of us with losing mom - we've all had to find new normal. Having this site to vent and learn from others is a true blessing. I'm not alone in being left alone. Thanks for helping me accept the things I can't change even as I keep hoping they will. To all who care for others and the people who care for the caregiver - God bless you!


almost 3 years ago

lngbeachr it is certainly hard to be caregiver and have a restful life. It is imperitive to take little breaks whenever possible. Sometimes a break was just to go to dinner for an hour or so. Caregiving is often lonely and thankless, but we learned to cope with laughter/humor. I cherish many of the moments I had with mom, even the frustrating ones.


almost 3 years ago

80's is the new 50's Geezer! We took mom on a lot of walks and she loved it. It was very helpful to calm her down when she was angry. She would stop and talk to everyone along the way, but the neighbors knew her and were aware of her condition.


almost 3 years ago

It states the truth! Caregiving is a 24/7 job and outside family members should always be aware of the caregivers well being and not just be inquisitive about the sick/elderly/parent/famuly member. Caregivers have feelings too. We need reassurance and some consideration.We need other famiy members to help us out once in a while so we could have some peace and serenity.


almost 3 years ago

Greetings to all Caregivers, I haven't been at this as long as many of you - it's just passed five years a couple of weeks ago. It is a long, lonely road but we still have the help of a lot of laughter. I seem to have a knack for remembering jokes, and with my wife's ALZ I can always repeat and she isn't the wiser. I have found out that - at least in our case - if I can get my wife to go out for a walk it seems to "lift" both of us. And the good side is that we're getting rid of our pot-bellies. (There is always some good hiding somewhere if one can just find it. Go for walks, tell those old jokes and keep on "keepin on". Geezer81 P.S. I'm really 82 now, but I'm sticking with my old tried & true moniker.


almost 3 years ago

MemoryofMom, thanks so much for your comments. I know there are no easy answers. I reach out to my siblings and ask them how they're doing and they don't even respond to that. I've thought about calling a family meeting - but I don't know if I'd even get a response since I haven't for some time. All I can do is keep trying. It's a little harder to stop expecting...


almost 3 years ago

Arwen, we had siblings that were less interested in helping and it can be very frustrating. My brother would help when I was very direct with him. I called a few family meetings with sibliings and dad to discuss mom and dad's needs and that would usually help for a while. My goal was to get them to commit to some task/chore in the group. I was not emotional, but expressed the need . This approach was helpful in small doses. You may need to accept that the facility will need to do more of the work and you take on more of a role of manager, making sure his needs are met by staff. The choices are not easy, but breaks are critical so you can stay in for the long haul. Hang in there!


almost 3 years ago

I want to say that I think people in health care that act like they give a hott about the caregiver are awesome. We had several along the way with mom that took time to just ask how we were getting along. In some cases they showed more concern than family . Good for you anonymous! You are a bright spot in their lives when you take just a moment to ask them how they are coping.


almost 3 years ago

Our dad is in a nearby assisted living facility and suffers from cognitive and visual impairments. I have three siblings - one lives far away and helps as much as she can - she calls dad, sends him cookie care packages, emails, sends notes, flies in to help, etc. and she regularly checks to see how I'm doing. I have two other siblings - one is local, the other is only 3 hours away. My brother has never been particularly good about communication in general, but has helped when asked (when he's around). He tends to avoid and/or fails to respond to anything unless asked directly (phone call or face-to-face). Our youngest sister who helped get dad moved here (away from her), now ignores dad for the most part, and ignores me completely. I've asked for help numerous times and in numerous ways - but it doesn't seem to make any difference to the two who are closest and completely capable of helping. I don't ask for much, and certainly not praise or thanks. I can't make them help or care. I try to stay positive - I do wear that happy face, but I've left no doubt that I need help and don't expect much - I keep the requests simple and do-able. I'm exhausted and depressed - because I haven't had a break since the middle of June. I don't presume that their lives aren't complicated, but they don't have responsibility for dad - so I'm sorry if I do expect help and to know they care about me. It hurts to be ignored.


Anonymous said almost 3 years ago

Actually, I work in a hospital and book patients for cardiac procedures. Recently we've followed someone who has been undergoing cancer treatments for some time now. When listening to the gentleman's wife give me an update on his condition and whether he would be ok to see us, I asked her how SHE was doing. Our conversation then turned to her. Hopefully, even though I could only listen, I hope she felt better knowing that someone cares. I often wonder who looks after the caregivers.


almost 3 years ago

It annoys me that people call to speak to MIL, but NEVER call to speak to my husband and I to ask how we are doing with everything. The family treats us like it's her house and we're the paid help, vs it being OUR house, and we gave up a lot to take her in when they would not. Apparently though, they've always treated DH like this. He's the scum of the earth, until they need something from him, or they need to dump a family member on him.


almost 3 years ago

Franny, my dad got Lymphoma and nearly died just before mom passed away. He would not let us take her from the house eventhough my sister-in-law was a speech therapist at a very good nursing facility wth a good Alzheimer's unit. He finally agreed when he was hospitalized and nearly passed after an aggressive Chemo treatment to prepare him for a marrow transplant. The doctor told him that the stress from chemo and caring for mom would kill him , so he agreed to let us move her to the Alzhermer's unit. Mom was very advanced at that point and was only there a few months. I know things are hard, but learn to cherish the moments! Oh, dad has been cancer free for 18 months, but he misses mom and feels a lot of guilt because he was not able to care for her at home. I write about some of our experiences at www.memoryofmom.com. It is my hope that some of the stories will inspire and encourage other caregivers. Laughter is good therapy by the way!


almost 3 years ago

Sorry, for waffling on here. Yes, I would also say...reach out..ask for help it isnt easy. However, I have learnt how important it is to nurture ourself first, make time for you...then you have more energy for this journey. There are beautiful people out there who are really happy to do what they can...... Be gentle on yourself too...


almost 3 years ago

My dad experienced what Franny describes in her comment. People tend to avoid unpleasant things, and watching someone fade away is not pleasant. Grandchildren did not want to see their grandma change so much. They wanted to remember the one that took them to the zoo, the mall, dances, and other fun events. Unfourtanately, people stay away so they do not see all the obvious needs. People are busy and have 100 things they would rather do than go help a loved one. This is very frustrating for those that are involved. We found it helpful to ask for specific help with a chore, errand, etc. My hat is off and heart extended to caregivers. It can be a long, lonely road.


almost 3 years ago

Its funny...I asked my brother if he could come for the wk end or even the day to support me...and to be with mum. I have 2 boys 5 and 7, my husband works away 1 wk, hme the nxt. (Thankfully he is home on Tues the day mum leaves..and has managed to get an earlier flight home...every hour counts !!). My brother said I dont think I can handle it , so he didnt come. I understand that feeling...I feel that too..but I am living it and will be here with Mum and do my best...even though it is breaking my heart to take her there... I understand now so much more how it was for my Dad. Thankfully, he hasnt had to do this. Bless him, left us in May, after his sudden fight with cancer. At times like these...I really appreciate these support groups when you know people truly understand.


almost 3 years ago

Balance is VERY important Renee. You are not superwoman (thie fictional character than can do everything), you, like the rest of us are mere mortal. Reach out now while you are early in this journey. Be proactive and get people lined up to help. Manytimes it is easier to get others to help in the early stages than in the late stages. Take breaks from time to time to recharge your batteries. Oh, I found it helpful to call someone with a specific need rather than just asking for help generally. I would ask a sibling to take mom to a doctors appointment or take her shopping. I would also get them to watch her for a night or weekend.


almost 3 years ago

Just mostly; That I'm not alone Thank you everybody :-)


almost 3 years ago

Yep, I have certainly learnt to expect less and be thankful for the little things. Again as things have been harder, and mum has deterioated....I have seen less of people, heard less...and feels like people even just dont ask. Can be a lonely period. However there are beautiful angels around, that say or do something that just lifts the spirit and gives that extra strength ! Its a challenge but I try to take the moment....and tonight my heartvwarming one was....my 5 yr old hopped out of bed and said " Mummy can I go and say good night to Nanna?" and off he went and found her as expected sleeping but he got real close to let her know.... And she leaves us to go into a residential home in two more days....I can still bring her home for wk ends and days out and go in every day...I am dreading that step but I know now it is the road I have to take....However I will come back to the moment and live where I am right now...its a challenge.. Thanks for having the opportunity to off load. x


almost 3 years ago

Its so sad to hear all this, especially since I've just started really caring for my mom and I already feel some of the burn out that I've read about here. What's even more difficult is having a toddler as well and feeling like I have no time for either between work and home - no one besides my partner seems to really notice it. I've been lucky that she's been able to pick up a lot of the slack with our daughter, but my brother and sister have been no help with my mom and she spends at least 8 to 9 house a day with no one there before I get back from work - they only live 15 minutes away! Drives me crazy! I felt so guilty about not keeping in touch during the day that I bought her this little, prepaid phone from SVC and tried to teach her how to use it -- I'm hoping that once she heals up a bit more from a hip injury that's put her out that she might use it more. Truthfully, I know no amount of cellphones or even time in the day can cover what I'm missing...I just have to learn to balance I guess...


almost 3 years ago

Wow!. I have to say since i've lost both of my parents I don't have that role to contend with in my life. I take my hat off to all caregivers - you all do any amazing job with little acknowledgement or help from others and in my role as a pathology collector I do ask my patients how they are and really want to hear an honest answer, if I can only provide a sympathetic ear, some encouragement, hope and some guidence.


almost 3 years ago

LOnelynana, how in the world did you get in this super granny fix? Did all your kids just dump them on you or did you volunteer? This is too much and you need to step back and make your kids take responsibility for their children. I am telling you for your own good, that is too much and you are going to die and then who will take care of them? Rethink this and live. strong words I know from a stranger but you need to hear them. blessings and a hug. I see and hear you and am concerned for you.


almost 3 years ago

I am new to the caregiver role...I take care of my 2 1/2 year old granddaughter and I adore her. She has Cerebral Palsy and is developmentally delayed. But she is such a happy little girl. She can't walk, talk, or move well but what she can do is smile. I care for her 24/7..I quit my job to care for her. I do get very tired because she does not like to be alone. So even going to the bathroom is a chore. She doesnt sleep well so I'm up most of the night and once day breaks I have a 9 month old I care for too, and two one year olds and a 4 year old. All my GRANDBABIES. I enjoy caring for them but family do not realize how much it takes out of me. I don't get to go out much because of having all the kids and as I dont mind much. I would like to go out every once in awhile. It seems I'm invisible. And as for friends, like it has already been said. Since I'm always busy no one stops by anymore. I feel very alone and unappreciated. I ask for help but everyone is busy. I guess since I always have things done and my house is not a mess and dinner is always ready and the kids are clean and fed. I'm super woman. I'm so not. I'm super lonely.


almost 3 years ago

Geezer has a great attitude. My dad did not cook much, so he an mom ate out a lot in the early years. We took them out a couple times each week to eat, but as the disease progressed, mom was very agitated when removed from her environment. She started getting angry with people around her and impatient with servers. We stopped taking her out as much when she started folding her food up in her napking and trying to stuff it in her pocket. We enjoyed the time at restaurants until we had to change. Then we enjoyed bringing food to their home for our dinner visits. The progression of the disease can, and usually does, put extraordinary stress on the caregiver. Dad was always healthy, but got Lymphoma in about year 10 of mom's Alzheimers. Chemo kept it away for about nine months, but continued stress weakened him immunity system and it returned. We put mom in a nursing home for her final few months and focused on getting dad well. Docs gave him less than year if he remained under heavy stress of caring for mom in the final stages. Moving mom was hard, but he has remained cancer free for 18 months, God bless caregivers!


almost 3 years ago

Actually, I have never given "recogition" a thought. We happen to be a couple with great distance between us and family. Neighbors do ask how the wife is doing and I am fortunate to reply that "things are about the same". If I were to use the term "blessed", then I am. My wife is still in the "early stage" after five years and we just go on with life in general as before. Almost! As all home caregivers know, you are "it" for the most part. Fortunately I happen to like to cook so we continue to eat pretty well. We do go out for dinner more than we used to but I consider that to be good because it puts my wife in an active - though not too personal - situation and gives me a chance to keep her attentive about things which have always pleased her, such as a cute child or a new type of food. Good mental exercise. And, of course, it's a change for "the caregiver" also. Haven't seen much comment on this by the psychologists, but I consider it to be a good thing for the both of us. Good luck to all caregivers. DO do something that you also find interesting. Geezer 81


almost 3 years ago

shybug - Sometimes our loved ones treat others better than they do us. To us they can act mean, but when they are in a support group or respite, they change and try to act nice. Try it.


almost 3 years ago

Tennismom is so right. Family members don't offer much help. Always too busy with work. Since I don't have alot of time for "fun" activities, my friends are disappearing. That is the hard part about caregiving. You lose so much of yourself, your time, your friends, that pretty soon you turn into a hermit because it is just easier.


almost 3 years ago

thank you; but I have thought about it, mom is way too mean to take to a place such as that. She has this thing that she hates the small commutity we live in.


almost 3 years ago

Shy-some family members can be really tough to get help from. Support groups can be a great place to find help for little breaks. There is an elder-care facillity in my area that offers adult daycare at reduced prices. Maybe there is something like that near you.


almost 3 years ago

Great idea about the gift card for home health agency. One of my friends from church who works in this field offered to pay for care so I could attend the evening ladies Bible study. I plan to take her up on it. Now that is specific help.


almost 3 years ago

Excellent idea Joy


almost 3 years ago

Finally we are talking about what we need and suggestions and ideas on how we can get it. How are YOU doing is so easy to ask a caregiver. I also like to give big HUGS. Sometimes we are never touched. Another great idea for friends and/or family is to give a gift card from a home health care agency for 4 hours off.


almost 3 years ago

my biggest help has to be God. He is never too busy to listen!


almost 3 years ago

One friend is the person that ask or talks to me; Family seems to makes things worse. On the most part one person is just snoty towards her ( bro in laws brother ). I try to tell him all he is doing is making my life harder. When I do ask for at least 15 to 30 mintures for myself, I get told..... Don't have time or she not my mom.


almost 3 years ago

Lonely Wife is right about reaching out. We certainly did ask for help from other family members and were grateful when we got it. It was not always consistent, but any help very appreciated and needed to recharg. Dad was bad about asking for help, because he felt like that made him weak. We would just go over and do the yard, clean the house, cook, and take care of other necessary chorse. We quit asking what we could do and just did it. Caregivers need help, so I always encourage those nearby to do something and not just offer.


almost 3 years ago

I found that when I felt that no one cared, I found that it was me that was closing up, shutting others out, playing God thinking that no one could do it as good as I could. When I opened up and admitted that I needed help and told others specific ways that they could help, I suddenly was not alone anymore, I had help and they were blessed to do it. Others don't know what to do but compassion is evident in others when you take them into your confidence and realize that we don't have to be martyrs.


almost 3 years ago

We saw this with friends and family as we cared for mom. The more she declined, the less we saw some family members. It is very hard to see a loved one slowly fade away and much "easier" to stay away. To me, it really came down to selfishness on the part of some, because they were too "busy" in their own lives. Like those of us involved were not. Caregiving can be a very thankless and difficult journey. We did it because it had to be done and we learned to appreciate the little breaks from those less involved. Hang in there caregivers.


almost 3 years ago

It is the truth!


almost 3 years ago

How are you doing to a good question, but how about "Have you done something fun lately?" When I mean fun, just getting out with your friends for a walk, run, or a lunch. Usually family see you are the strong person and not needing a rest. Friends start to go on their own way and stop calling.


Anonymous said almost 3 years ago

Have a good friend who when we talk or e-mail, she always ask. Thank god for her :-) 'Cause family don't seem to care.


almost 3 years ago

I agree with all of it . Also experienced all of it. My caretaker days are over but I know all about it. I took care of my husband for about ten years. NO HELP at all. No one ever ask about me or volunteered any help.


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