Caregiver Stories - Are you a caregiver?
Most people who look after a parent, a loved on, no matter how much time is spent for what they do don't consider themselves as caregivers.
I was the husband of a caregiver for many years while my wife looked after my mother in law. At times it was pure hell.
I have also care-given to a friend with brain cancer and another friend who suffered greatly from Diabetes related issues.
The issues from all were the same... frustration, hard work, tiresome, confusing and well... a host of other issues.
Main thing I found was that we were (and still are) not alone.
Care to share or vent on your situation?
I am! To my grandmother.... and it sounds like I say that with such excitement....but not so much.
love her to pieces but she is the most ungrateful and difficult woman ever, and all I can do is hope that my mother (and myself) don't turn into her!! I clean her house (well, parts) and do all of her grocery shopping, which I can't even explain what a chore this is. apparently it is my fault when the store doesn't have what she wants, or enough of it. and she yells and blah blah blah...and you would think it would kill her to ever say thank you. she really is a crotchety old woman.
i cant even write about how frustrating everything i do for her is.
daytripper This is not an answer to your question, Stan, but I always thought Jack Kevorkian had the answer. I hope I'm never a burden to my daughter. I would like to just go out quietly.
cbel I am the caregiver to my mother, who has dementia. For the most part, we have adjusted fairly well to having her in the home with us. We have located services where she can go on a daily basis so that she is both well looked after and has a good time. This just leaves the evening, early mornings and weekends for us.
It is challenging as she does not have the ability to learn new ways, so all must be adjusted to her. It is not her fault, but she just won't remember that you wanted her to do something at a different time. It is an adjustment, but as long as you keep in mind that this is an illness and not something that she intends, it helps keep it in perspective.
As challenging as it is at times, I am thankful that she is physically mobile and does not wander off the property. As long as we can manage this, she will remain in our home. At the moment, things are in a steady place. Let's keep hoping it stays that way.
Coralie I helped care for my father over the last 11 years of his life. The last year being the hardest. It was so hard watching him slowly die but I am glad I was there for him! My father had a lot of pride and hated asking for help, he said I shouldn't have to care for my father. I told him that it was my turn to care for him since he did such a great job with all 6 of his children and my mother. So yes I really don't consider myself a caregiver since I am his daughter and that is what family does.
My father lost his sight (almost completely in the last 2 months of his life) and I was holding his hand (this was 2 night before he passed) and he said to me "Don't cry, everything will be okay!" I tried to tell him I wasn't crying (even though I was) and he said Just because I can't see anymore doesn't mean I can't tell when you are crying! Even until the day he died, he was more concerned about how we all were rather then himself. I so glad I was able to be with him, especially the last few days of his life, so that he knows how much he was loved! Those last days with my father were very precious.
Mommyof3 Cbel - I can tell you personally that I did not think of my father's illness as a burden. I actual was very fortunate to be able to help as much as I did!Don't ever think you would be a burden to your daughter, if (and I hope that you don't ever do) need her help.
cbel - to avoid that, you may want to put down in paper specifically what you specifically want and don't want in the future -- my mother is giving me power of attorney and has written a living will with explicit instructions, I know for one that she does not want a feeding tube.... very easy to do and lay out and would wholeheartedly recommend it for both your and your children's mental health!
Now as a former caregiver for my grandfather, I'm with Mommyof3, caring for him was never a burden!! And the time I spent with him ended up being of great benefit for me, but that's a long story.
There are only certain people that I think can be a caregiver and once you're there, you know.... I've already told my mother in law that she should not worry, that I'll gladly take care of her and my father in law, I know what it's about and know my limits!!
trekster3 So far I agree with all of you... And trekster3, so true.. knowing your limits and knowing when to ask for help are extremely important!
i dont care give for a sick person, but i do care-give for an elderly family mamber by doing so many things that she cant or wont learn to do for herself, her husband always took care of these things & he passed away a few years ago so it fell to me..i agree w/daytripper on some things..i never get a thank you for anything i do..the lack of gratitude is staggering & the sense of entitlement along w/monumental & irrational expectations would make your head spin..her glass is always half empty & tho she has more than most, to hear her tell it you would think she was liveing below the poverty line..it can be daunting & i hope i never get like that..
Ginger Ginger, what you do is one of the most common types of care, and one that most folks who do it don't consider caregiving.
I consider a caregiver as anyone who gives up any amount of their time to aid another who needs assistance due to medical or physical issues.
It could be paying bills, grocery shopping, a half hour of listening to stories, then all the way up the ladder to full medical care
Up until last week we cared for MIL who has Alzheimers. Severe the last 3 years. We tried keeping her home and haivng her in daycare while we worked BUT with DH not well and me not well we just could not keep her safe anymore. She has overdosed on pills, fallen and burned herself so many times I cant count. We just recently had to put her in Warren haven. At firt we thought just temporarily as I recuperated but they have told us she is just not safe to be home. She has given them a run for their money for sure. Taking care of her has been the hardest thing we have ever done. Its worst then taking care of a child because of her size. I have hurt myself over and over again trying to catch her or wash her or dress her. She is a bit violent and she WAS never like that EVER! I have known this woman since I was 14 years old and I truly believe she came into my life as I did not have a Mom who I could depend on. I always thought I would care for her til the day she was taken from us but it is truly impossible. She has slapped me, kicked me, swore at me and said things to me she would never say in her life. I know its the disease so I just took it. We visit her now and she is at the point where she has lost what year it is and she thinks her son is her husband. I MISS HER SO MUCH! The disease sucks. What hurts me the most is her other family and/or friends who are in total denial and think we should have no problem taking care of her. I don't have any problem at all its my well being and health I need to look after also. If not for myself but for my family.
I have been a caregiver to three family members since my early 20's. It can be a challenge on any given day but I would do it again in a heart beat.
My DH should get a gold star also. At one point I had moved a family member into my home gave up our bedroom, because it was the largest, they needed to be hooked up to an IV etc. At that time it was easier for them to come here than for me traveling to where they lived. I had young children, school and everything else that goes with having children.
I know that my family members were grateful, they told me on a daily basis how much they appreciated our help. They are gone now, I miss them.
I did not deal with Alzheimer's or Dementia. I think that just adds an entirely different spin on caregiving. It is a special person who can care for those individuals.
TidyChristine, it is very easy for anyone who has not stepped into your shoes to have an opinion about how a situation should be handled. You and your husband (Bergey?) have gone above and beyond and I really believe in her heart of hearts that your MIL knows and appreciates all you have done for her. She is where she is safest . Your kindness and compassion is not lost on her. Be well :)
LVMomOfBoys Christine, I teach a class to a dementia group and I honor the work you did with your MIL.
Each time I walk into the room it is like we meet each other for the first time, and I only do this with them three times a month. For you and your hubby to deal with this 24/7 and the extent of her decline is, well, honorable and commendable fall to far short.
Thank you I appreciate it and I know in my heart that this is the best thing. We all miss her very much long before we placed her.
We also took care of FIL with an ailing heart for many years. Since he passed her mental health declined even more quickly. In everything I read its very common. The 2 situations are so different but each has its own difficulty. Every situation is different and every person is different. I have to admit I would do it over again. I love my inlaws with all my heart and they were the best I could ever ask for. It has taken a toll on our health but thats what family is for right?
I was the primary caregiver for both my parents...they both succumbed to cancer...my father battled cancer for 5 years before passing away...my mother was diagnosed with cancer and passed away 9 months after the diagnosis...we were taught as children...that death is a part of life...we had hospice care...but hospice was over extended...so that meant hours...of care at home...changing bed linens...personal hygiene...administering medication...its not for everyone... it was important...to see my parents taken care of with dignity...during their final illnesses... I had to take care of them...my father passed away early in the morning... I was there with him...he was in his own home... as he wanted it...my mother passed away in my home after several days of care by my family and me...hospice offered to put her in a home...but I denied them...she was at home with the family she loved and the people who loved her...I was talking to her and holding her hand when she passed away...quietly...may she rest in peace
oldman My heart I send out to care givers ,it is not easy Blessed be to you all, I was a mantenance man and a lot more at a local long term care houseing unit . and the aids gave care to them all but the longer you worked there, the closer you get to the people. and the care you give at no mater what level you can see it in there eyes that they are thank full for the care , there is no way to sheild your self with loss , it is hard and it wears on you after time .
you get to know a couple and she becomes sick and she is moved from there out building to the main house , and you sit with him when she passes. and then he gets sick and is moved in to the main house and your there with him as he passes , and its hard . well do that for 22 years and you get a differant out look on death and dieing and care giving
Blessed be to the care givers
Caged Animal I *know* there is a special place in heaven for you caregivers. I haven't been in that position yet...
@Christine~you did the right thing..one of my aunts refused to put her husband in a nursing home when he had Alzheimers for so many years..her reasoning was that it cost too much & she needed his social security..our whole family was appaled by her reasoning but our hands were tied..if he fell, she would leave him on the floor all day untill her neighbor got home from work & could pick him up..the smell of pee is still so strong in her home that i havent been there in 4yrs since he died..on the other side, i saw a documentary on a young woman who had Alzheimers & her older husband had to eventually put her in a nursing home..he was so saddened & he went to see her every week..one afternoon an aid asked him why he still continues to come, she doesn't know who you are & the husband replied..no, but i know who she is..your story made me think of that..
I have been caregiver for my mom for almost 17 years. She has alzheimers. It has been a lot of work and I have missed many weddings, graduations and whatever over the years, but it has been worth it. When she was in nursing home for a short time for rehab I was appalled . We have had a daughter and her family move in several times over these past years, and my grandson grew up with 4 generations at the table. He is 5 now and leads his great-grandmom to her seat and makes sure she has her water. Have to keep them separated in church though or they look at each other and giggle:). We have all gotten quite good at candyland and dominos!
Ingrid No one knows what it is like to be a caregiver, until you have done it. My mom was in declining health (strokes, diabetes, eventually dementia and Congestive Heart Failure). She lived with us about 4 years with her health going up and down, and eventually only down. The whole family adjusts, and it becomes your new life. During the down times, I had help come in during the day because she could not be alone.
When you work full time, you still have a full time job all night, when someone needs your help. If someone has not done this, they don't understand. The average is 2-3 times a night to go the bathroom, and you really don't sleep, because it is like having an infant again. You are listening with that other ear that moms and caregivers grow.
In addition, my dad's dad was on dialysis, my MIL had two strokes, the last one a bad one that put her in a wheelchair, and she needed full time care, so family members adjusted their schedules to be there with her on dialysis days. It was very hard. I was working 10 hour days to be off Fridays to take care of my mom and mother-in-law on Fridays. This went on for quite awhile.
My mom died, and then a week later my father-in-law died, and then my mother-in-law moved in with us. She was with us for 4 months, until my husband's sister retired, and could take care of her. She moved into my mother-in-law's house, and now we take care of her at least one long weekend a month so my sister-in-law can get a break back at her home. No other family members give her even an hour of their time and some live within minutes. Their excuses are quite laughable.
I have said this on another thread of this nature, but it is worthy of being said again. If you know someone who is a caregiver full-time, even a few hours of your time will be gratefully appreciated, so they can run errands or just get away for a few precious hours. When someone is wheelchair dependent, it is really hard to just run to the store or go anywhere. It's practically impossible to push a cart and a wheelchair at the same time.
Christine, neither my mom nor my mother-in-law reached the level that you were trying to cope with. You did the right thing, and if someone doesn't think you did, they are welcome to give it a try in their home to see if they then agree with what you did. Reality will become apparent quickly.
That's my story.
Peggy C. Warren County will be starting a caregiver coalition ... their first meeting is next month. They will be following the lead set my Morris County which is being looked at as a national model.
If you like I can post when that meeting date and location is set.
Reading these stories and almost in tears, I realize how very fortunate I am not to have had to face being a caregiver thus far in my life. I can only say there will be "a place in Heaven" for you wonderful .caring, people someday and you will meet once more the family that you so lovingly put first in your lives.
Joyful I am a caregiver for my husband and beleive me its not easy one thing my husband is very grateful for everything I do he is always thanking me he has his one leg off he is blind in one eye and has chf and is on dialysis. I would do anything for him because I know he would do the same for me. He is a very caring person always wanted to help others which he did a lot of that working on there cars to just about anything they needed. I have been taking care of him now for five years and there are times when I feel very alone and don't know which way to turn I am very luckly I have our son and daughter-inlaw who are there for us they help me so I am able to get out and my husband looks forward for the grandkids to come and see him
I am a currently a HHA caregiver, and I can honestly say I LOVE MY JOB! right now I am working full time, I am a full time nursing student, and a full time wife and daughter. I started taking care of people when I was 16 years old, the first experience was when my aunt from florida was moved in to our home in Great Meadows NJ, and hospice had come in to talk to my mother and I, I helped my mom take care of my aunt with pancreatic cancer, and she later died in my home. To have someone die in your home is very hard, to have someone die is hard as well! At the age of 16 years old, I was signed out of school due to health issues and later that year received my G.E.D. and after I took care of my family member, I was taking care of her by, keeping her comfortable, bathing her, feeding her, and just keeping her company!! Then my mom fell sick with fibromyalgia and I still take care of her to this day, then my grandmother. I finally got into the career of caregiving because it is truley my passion. I work 45 hrs a week and take care of elderly patients, I truley love my job, and it is so rewarding to know that you can have an impact in someones life just by smiling at them and keeping them company. So everyone who has taken care of someone, family, clients, neighbors, or strangers it is truley a blessing to those people and YOU made a difference in their lives!!
Alicia Yup - i take care of my dad.
He sacrificed for me growing up - so I have no problem sacrificing for him going out.
Peace
I am humbled by these stories. My parents both died in their 50's. That was not easy but nothing like what all of you are going through. It makes me realise that we are all just a moment away from being taken care of. God please let us all be grateful and be treated with kindness and dignity.
Firefly My father is 84 and lives w/ my brother and I. We work full time but, luckily, he can tend to himself mostly. I make the meals. I have noticed a decline in his short term memory and hearing.
I am going to say this out loud for the first time.... I "wing it" everyday that I care for him. We did not have an instruction manual taped to our ass @ birth outlining this stage of his care.
He is not a burden. I know, in my heart, this is what I need to be doing now. I just wish I had more confidence in my ability....
Slapthecat Slapthecat, don't worry about not having the instruction manual! They can't write one for everyone! With you with him every day, you can see what he can and can't do, and when you need to make changes or take over. For instance, with my mom, after a few instances of leaving a pot or skillet on the stove and walking away, it was microwave only when we weren't home. When she fell, it was call me at night if you need to go to the bathroom, don't get up by yourself. When it was evident she wasn't eating right, or when she had to go on a special diet restriction for potassium or diabetes, I planned her meals ahead of time (breakfast and lunch), and had them in the refrigerator ready for her to eat.
I can only say it is learn as you go, and stick up for your loved one.
Slipcat, Peggy C is so right. Everyone who is a caregiver wings it every day. What is right for your situation is not right for another.
Every person is different and has their own personality, disability, and care needs. Each caregiver has their own issues as well. Those combinations offer limitless situations.
As a family caregiver, each day is do the best you can, learn from others and from your own adventures.
You all sound wonderful. For me I had a difference of opinion with a sibling about how much I could give as part time caregiver to Mom. The sibling never discussed with me what could or should be done. It was assumed I could manage a full time job , caring for a disabled person at home and go to Mom's house at night to cook or on weekends. I know we were sharing the care but the sibling did not work. What gets me is that the equity in the pArents house could not be used for care because the sibling felt it was their inheritance.
Verysure Verysure.. stories of children denying parents care to save their inheritance is unfortunately common :(
After you have vented, try real, real hard to celebrate the life of the family member u are/were caregiver to. As Firefly put it "God please let us all be grateful and be treated with kindness and dignity."
Grillgirl Slapthecat -
I was winging it, myself, for a while. I did reach out to the area ageing sources and was fortunate to have several come to my house to review the potential needs that we may have.
This was at no cost to us. We had a social worker, occupational therapist and nutritionist come to the house. We also had a caregiver assistant come to us to review what was available to help us as well. There were various services available out there.
It was helpful to have the evaluation and to outline what additional changes we were able to make to support my mom. In the end, we were able to get assistance to pay for some additional days at the adult day care so that she could attend every day during the week.
This has taken the concerns about her being left alone in the house, while I worked, off my shoulders and now I do not worry about her cooking in the house while we are out. (She was starting to have problems just using the microwave as her memory of how long something needed to be in the microwave was going back to when microwaves were new and not as powerful).
I would suggest that you do contact the office of ageing for your county. It is a good place to start to find out the services that may be available to you. I know it did help for me.
you all deserve a lot of credit.. I am sure it's not always easy.. you have big hearts..
darluggh For anyone who is caring for an adult with issues Office of Aging is the way to go. Ask about the "Global Program". Its a federal program to help keep seniors in their home as long as possible. It helped us for the last 6 years. The last 3 years had MIL in daycare fulltime, and an aide to help bathe and essential needs when she was home. MIL did not like that too much so I still had to do most of it but the aide then helped me with my things in exchange. She was GREAT! I TOTALLY recommend the program.
OK, the Warren County Caregiver Coalition is forming as I mentioned earlier. They are looking to get family caregivers involved, not just professionals in the field of aging. By having folks like those who posted their stories here, they can make sure they are addressing the real needs of the community.
Please read the following letter and try to attend and get your voices heard though getting involved.
-----------------------------
All,
On behalf of United Way of Northern New Jersey, I would like to invite you to be a part of the launch of the United Way Caregivers Coalition in Warren County. As an integral member of this community, your input on the formation and direction of a Coalition is very important. Our goal is to ensure that the Coalition understands the needs of our caregivers and brings the community together to meet those needs.
Please join us in our efforts to accomplish this. Our first meeting is on Monday, March 19, 2012 from 2:00 to 4:00 pm at the Wayne Dumont, Jr. Administration Building, 165 County Route 519 South, Belvidere, NJ 07823, in the Cooperative Extension meeting room. Contact Anna Hockenbury by March 9th at 908.835.3550 or Anna.Hockenbury@UnitedWayNNJ.org to confirm your attendance. Agenda will be forwarded prior to meeting.
United Way intends to mobilize the community to help improve the lives of caregivers in Warren County by helping them access resources, services, education, and other support needed to sustain them in their caregiving role. The coalition’s mission is to promote knowledge of and action around caregiving issues.
Sarah Brelvi
Chief Professional Officer and Women’s Leadership Council Director
United Way of Northern New Jersey
You are all amazing people! Does anyone know if an agency's help with renovations for homes to take someone in? We have to put in a ramp for wheelchair as well as a few other changes. The person moving in with us had a stroke and will hopefully get better, they are not retirment age. Also are these adult day care places only for certain ages? Any help is greatly appreciated. I need to figure all this out so they have the best options available.
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