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Author Topic:   Where do younger caregivers of elderly parents fit in?
GRM4LOVE
Moderator
posted 08-27-2002 07:57 AM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
posted for Beverly

I am getting really sick and tired of hearing about all the baby boomers who are caregivers of elderly parents.

I was born in 1969, my mother was born in 1925 and died this January at the age of 77. I am not considered a baby boomer not even a "tweener" yet I have cared for my elderly mother and father since I was a teenager. In fact at the age of 7 after finishing 1st grade I became aware of the fact my parents were "older" and I would be faced with taking care of them early in my life.

Women my age do not understand what I have done (24/7 skilled level nursing type care for 17 months plus all the other time by myself) and few baby boomer women give me respect because they are not aware of what I have done - I am just another young selfish woman to them.

I just do not fit in anywhere as a caregiver of elderly parents. Yes, we all experience similar feelings as caregivers, but there is something hurtful about not being recognized.

It is strange that my 4th grade teacher and dear family friend lost her 90 year old mother 10 days before my mother died and I have another friend whose 80 year old mother died 6 weeks before mine. The later friend was married the year I was born!

They have leaned on me for support, but I did not feel support in return. Of course, there are other 32 year olds whose mothers' die (my mother lost her mother at the age of 24), but there is something different when you grow up with older adults and the people you associate with are older adults and you are faced with all the elderly issues in addition to losing your parent when you should be doing the things young women do - like diapering your first baby not your mother.

I personally do not believe caregivers are respected at all. We are pee-ons and even considered below nurse aides by home health and hospice agencies and many other areas of the medical field. We have no rights.
Beverly

IP: 66.108.75.139

GRM4LOVE
Moderator
posted 08-27-2002 08:02 AM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
Hello Beverly,

Firstly, I am sorry to hear of the loss of your mother. It must have been unusually difficult for you at such a young age, to have cared for her for so long. My sense is that your mom was very blessed to have you caring for her....

How true your letter is.. only a few weeks ago there was a big article in People magazine showing how young children were caregiving parents and grandparents so they could stay together, keeping them out of a nursing home and so the children who were caring between going to elementary, junior high and high school wouldn't have to be placed in a foster home.

The truth is that the boomers are the most hard hit generation and for this generation it has already become a crisis ... but the government doesn't see it fit to inform everyone on this level. The circumstances of caregiving have become quite different in this day and age where medicines and treatments are keeping people alive longer.. this doesn't always mean the quality of their lives are kept up either.. so the crisis has been identified as boomers and sandwiched generationers but as you will see from the article in People Magazine, younger children who are full time caregivers are beginning to get the recognition and hopefully the support they are in need of just like yourself.

As for respect, while I am in my fifties, I am really getting how unimportant it is to gain respect from others. What is important is that we know from within how much we have shouldered in terms of responsibility and in the loving care we have given. When we need something from others, we dimminish our own actions into something less and even to a state of victimhood. With all the strength and power you had to help you endure all you have gone through, there is much you can share with those who might be struggling with the same issues. Just because boomers are older, doesn't neccessarily mean they have it down pat. They grow, learn and heal daily as long as they are open to it and if they aren't so be it... the reality is that we can only change ourselves, our beliefs and perceptions and to be a shining example.

My heart goes out to you.. all caregivers lose something at the various stages of life they are in...I honor your anger and hurt and the courage to speak up for what you feel and believe in.

I have posted this in the newsletter for September as I know there are younger caregivers involved in the site and I am also posting this at the message boards in hopes that others will respond to your needs as well.

I do hope you will visit with us at the boards and in the chats.

Richest blessings.in all you are doing.
Gail

IP: 66.108.75.139

PrairieGal
unregistered
posted 08-27-2002 08:58 AM           Edit/Delete Message
Hi Beverly...and welcome...

I know exactly how you feel...my parents were older than most when they had me...my mom was 41..she became ill just when my husband and I had our house paid off, etc,...and at a time in our lives when we thought now finally we can travel and use extra money for some fun things.
There was never any doubt, or any discussion that we would care for her...we both wanted to and we both are SO glad we did...I would do it all over again without a second thought...
Times were tough while caregiving though, and I did find out in a hurry that there is no real help, financially or otherwise for caregivers. I had to fight tooth and nail to get what little I did get in terms of respites, etc. Then when my mother passed away it took one of our home care nurses to make a stand with their social worker as to offering my husband and I both help with grief coping, should we feel we needed it.
She told them we just can't dump these people now, after all that they went through.
This is exactly why sites such as this are so very important for caregivers...a place where everyone understands and everyone can relate, as we have all been there.

Please accept my condolences on your mother's passing...I know she is looking proudly and with much love down on you...

Take care...
PrairieGal

IP: 24.71.134.78

sandra
Member
posted 08-27-2002 06:47 PM     Click Here to See the Profile for sandra     Edit/Delete Message
hi Beverly-I'm replying to your frustrations with being a younger caretaker. FINALLY< I can chat to someone who understands!! I,also was born in 1969- my dad passed away last year of Alzeimers. He was 72. He was diagonosed in 1996-when he was 66 and I was 27. I took care of him at home-until the very end. (Now, my mom has dementia- I'll be taking care of her,as well) But-I totally agree, nobody understands! I'm not middle-aged-so everyone thinks I'm young enough to handle it. Also, something else that irritates me, my friends with kids! ! "OH, that couldn't be that bad-it's no different than caretaking for a child. But, it is different, a child will grow up and prosper. A parent with dementia is not going to recover. Also, watching them deteroiate from the way they were when they were well. AND< changing a diaper on your mom or dad is ALOT different(I'm sure) than changing a baby or young child. I wouldn't wish it on anyone! Thanks so much for posting- I guess I'm not the only 30 something caretaking for an older parent. If you ever want to vent to me-e-mail me. sandrapmay@msn.com

IP: 209.110.24.65

GRM4LOVE
Moderator
posted 08-27-2002 07:02 PM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
posted for Beverly

Thank you for your comments. But the ones I wish could at least say "Thank you" to me are my dad and my brother. They could not face the responsibility of helping to take care of my mom much less face her death.

In fact, my brother was so nasty to me once I had to make the decision to place her in a nursing home so I could get rest. He told me that once mother died, he wanted to have nothing more to do with me and I was no longer welcomed in the family. We have not talked since the day we buried her.

He told me that when things really got tough I could not take it. (I would like to know what he thought I had been doing the previous 21 months) He threatened to take me to court to have me declared incompetent to serve as medical power of attorney. He even used my dad against me by instructing him not to go sign the financial agreement at the nursing home. (The doctor almost declared my dad incompetent)

The discharge planner at the hospital basically told him he did not have a case, because I was choosing one of the best nursing homes in the area (only three had a skilled bed available. My brother probably just assumed you call ahead and say you need a bed and you get a bed the next day - like a hotel huh?).

Plus my mother's medical needs came before the finances, which was not a problem. It angers me because 2 years before my brother wanted my parents to just "accept" they were elderly and go into a nursing home. He and his wife did not lift a hand to help me and my husband and went off on their vacations, but have the audacity to judge me and act like I did nothing.

Yes, you're right you have to know within yourself what you have done and what strength it took. I would never have chosen not to care for my mother. There was no other choice for me. I would never trade the experience of taking care of her all those years or of being the only one with her when she died. And though I had wanted her to die in my home where she had love and security like she had never know before, it was in the hospital but we were both at peace and knew that the important thing was we were together.

It was (if you will pardon me for sounding weird) the most beautiful moment in my life because I was with her as she passed. May be it is comparable in a strange way to how she may have felt when I was born. It was just the two of us - and she was alert (even with a brain tumor) and looking me in the eye as she died. It was 1:30 a.m. on January 19th, the morning after her 77th birthday. It was bittersweet.

I miss her dearly and even though I have been back to work for 6 months now, I still wonder what do I really have to live for now and what do I do now. So much of my life was my mother.

Beverly

IP: 66.108.75.139

GRM4LOVE
Moderator
posted 08-27-2002 07:13 PM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
Hello Beverly,

I am sending lots of warm hugs in your direction. You have been through so much.I am sorry to hear that your brother and father treated you as they did, but unfortunately many a caregiver will share their similar storiews with you.

My concern for you at this point in time is that you have not been given the time to grieve properly over your loss... and you are still burdened and carrying the hurt and pain that your brother and father have caused.

Since you are working again, I would encourage you to take some time out and perhaps work with a professional counselor who can really help you process your anger and hurt.

If there is one less AI have learned from caring for my loved ones at their end of life stages is to begin living my own life more fully and it isn't always as easy as we would like to think it is. There is an emptiness; a void, and we must make special conscious choices how to fill the void with loving nourishment.

You have shouldered so much stress and a myriad of mixed feelings that can remain with your body until you are able to process it. You still have the opportunity to live a full life, have a family of your own and it is vitally important for you to now take care of you on a body, mind, emotional and spiritual level, so thawt you can move on your own path in love with joy and good health.

Just to read your description of how it was being with your mom as she transitioned is so beautiful and truly very special... moments like that can carry us through a life time of peace knowing the gift we shared..It makes it all worthwhile... perhaps it was meant for you to have the very special connection that you did with her up until her final breaths without the negativity, harrassment and fear your family was strapped with.

Keep posting...and blessings
Gail

IP: 66.108.75.139

Beverly
Member
posted 08-28-2002 05:12 PM     Click Here to See the Profile for Beverly     Edit/Delete Message
Hello Sandra,
I am so sorry about your dad passing and about your mother's condition. Do you have any help from other family members? I send hugs for what you have done and what you are still doing. It takes someone very special and strong to be a caregiver.

My parents were married 20 years before my brother was born and almost 25 years before I was born. My mom had given up ever hoping for a baby, then she was so delighted that she was not only blessed with one child, but two - one of each at that! I have tried to believe that I had a special reason for being born when I was and I know now if I had not been born my mother probably would have died without the care she deserved for someone who was so sweet. Sometimes this realization does not always shake the questions of "why" I have had to care for my parents so early in life or feel a little out of the loop with my peers, but I have not lived my whole life and maybe even all of this will be made clear in time, too.

You are so right about those with kids they have no concept of what it takes to care for your parents. Physically, changing diapers may have some parallels, but it is still different. First the weight of an adult can cause you to hurt your back. And I always had to put my mom back in bed - during the last 8 months I had to use a hoyier lift - just not the same as putting a baby on a changing table.

Then as you said the mom gets to look forward to her child growing and progessing. We know our parents, the ones who took care of us and were strong, will never be the same and will degress. As a Mom baths her infant, feeds her infant, changes her infant, she experiences joy and pleasure of watching her child grow. As caregivers, we experience a much different set of emotions. They just don't understand, do they? They may not, but I do. I am glad my posting helped you know you are not the only one like you.

Just a thought... have you ever asked one of your "mom" friends to help you, so they can decide for themselves if it is the same?


Beverly

IP: 66.57.27.39

GRM4LOVE
Moderator
posted 08-28-2002 10:05 PM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
Hello Sandra and Beverly.

Welcome...glad to have you join us...and it's good to see you posting as well Beverly.

I hope you ladies will both continue to post here at the forums and come to the chats..others are bound to join in as well...

richest blessings
gail

IP: 66.108.75.139

AtoDisciple
Member
posted 08-29-2002 01:32 AM     Click Here to See the Profile for AtoDisciple     Edit/Delete Message
Beverly and Sandra:
I read both your posts with great interest. I saw a new point of view on the problem that we all must deal with. My husband is chronically and permanently ill. I myself am growing older and, since he has been
completely disabled for about 5 years now, I have aged considerably. Since you had to start so young to care for a loved one, it must seem like it has taken away most of your lifetime. I truly sympathize.
I know it is hard to do this alone. I have only one daughter and she works so hard to help us though, of course, in her situation she must work at a job also. That makes it even harder. Caring for her home, working her job, and helping care for us must be like working three jobs and with the added stress of seeing her dad's health become worse daily. I know you must be in this situation with the added stress of dealing with your brother and father.
I am praying that each of you, Sandra and Beverly, will receive wisdom, strength, and courage from the Spirit of Christ that dwells within everyone and is there for the
asking. I pray that your loved ones, though they might not be able to be well, will at least have good days to enjoy the rest of their lifetime.
Nina

IP: 205.188.208.172

sandra
Member
posted 08-29-2002 05:30 AM     Click Here to See the Profile for sandra     Edit/Delete Message
Hi - I'm happily surprised at all the posts on this situation. Beverly, thanks for letting me vent, not that I am glad of your misfortunes with your situation, but it's so nice not to be alone! Nobody I know has to take care of an older parent. I am so sorry about your brother,yo u do not deserve the grief he's handing you, you've already had enough grief. This really is becoming strange-how much we have in common. My brother who lives in Mid-west, I live in the North-east, only calls about every 6 months and he usually isn't very supportive. He did not attend my Dad's memorial service or my wedding. One of the times he called-he just wanted to know about inheritance with my parents estate. My sister, who is 19 years older than me, also lives in the midwest, and although she is more supportive than my brother, she still has her comments. "You're young- you"ll be all right" or she's telling me everything I should be doing. Neither one of them see what I do every day. You're brother should take a walk in you're shoes or helped you out before. My sister is better now and sometimes even says "Thank-you" but for the love of god- I took care of my Dad, now my mom has dementia and I'll be tending to her. She can't accept that she's the oldest and I (the baby) is doing everything. It sounds like your brother feels GUILTY and that could be why he doesn't say thanks to you. It's awful he's getting your dad involved. Once again, we went through something similar. When my Dad passed, my mom,my husband and I were all at his bedside. Isn't it a blessing?? They say hearing goes last and we told him we loved him and kissed him. I'm so happy you were there for your mom's last breath also. You should be commended for all you've done. Take care to Beverly and to all the wonderful caretakers!!

IP: 207.94.106.130

PrairieGal
unregistered
posted 08-29-2002 07:19 AM           Edit/Delete Message
Hi Beverly again... ...and welcome Sandra...

Glad you two found each other here...sharing with someone who has so much in common can really bond people...and can make it just a wee bit easier to deal with...

Siblings... ...I am an only child so never experienced what so many go through, having an uncooperative brother or sister...I just don't know what goes through some people's heads at times like this...family should stick together...guess in that instance I live in a dreamworld...lol..
I agree 100% with Gail about the grieving process...being a caregiver and then losing a loved one is a little different than when it is a sudden death I think..not any less devastating...what I mean is...and it is hard to explain...but the closeness, the responsibility, all the emotional ups and downs you go through AS a caregiver and being with your loved one...we sometimes need a lot of time afterwards to gain our proper perspective of life...to feel once again that we are valuable...I know I felt so worthless for a long time after my mom passed away...I just seemed "lost"...thank God for my wonderful and understanding husband who keeps reminding me I mean a lot to many more people.. ...
It has been almost 2 years since she passed and yes, there are still many days where I feel that "void" and that "emptiness" but now I am able to collect my thoughts and realize that my mom appreciated everything we did for her and she always wanted nothing more than for me to be happy...I also thank God for all the wonderful and special memories I carry with me of her...
And most important...crying is NOT a sign of weakness...

You two both take care...
and keep posting....

PrairieGal

IP: 24.71.134.78

Patti M
Member
posted 10-25-2002 07:08 AM     Click Here to See the Profile for Patti M     Edit/Delete Message
I have been feeling so isolated and as if there was no one who could understand how I feel. Not only do you all understand, but you have the same issues. This place is the answer to my prayers.

Patti

IP: 65.59.70.230

GRM4LOVE
Moderator
posted 10-25-2002 04:29 PM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
Hello Patti M and welcome

Just having come back from the International Conference on Family Care in Washington D.C. I must say that young carers were becoming a focal point for more of us to focus on. I mean young children 7 and up who are caring for a parent, grandparent etc...to keep them out of an assisted living facility and or nursing home and to keep the child from being placed into a foster home. The stories we heard from those who shared moved us to tears... it was overwhelming...I just can't imagine how they do it but they are and they are growing incredibly through it all to the point where they have completed school and even gone on to college... caregiving truly knows no boundaries and it is impt that our governments wake up to their needs...yes caregiving doesn't provide profits in our leader's pockets like wars do, but supposedly they are supposed to be there for us, the people...

please stick with us and feel safe enough to post and visit in the chats.

Richest blessings
Gail

IP: 66.108.75.139

Patti M
Member
posted 10-26-2002 07:03 AM     Click Here to See the Profile for Patti M     Edit/Delete Message
Thank you, Gail. While reading your response, I couldn't help but imagine my 7 year-old daughter trying to care for my Mommom. That there are children her age doing exactly that is mind boggling.

This isn't my first experience with Alzheimer's, so I know what I'm up against. I cared for an elderly aunt before she passed and that was a trip, to say the least. I am hoping and praying that Mommom doesn't start seeing little men in the corner and such. Aunt Bert almost had me convinced that they were really there!

I'm preparing myself for the eventuality of Mommom being in a nursing home. She's starting to drive Poppop insane and at 80, he can't really help his impatience. I called about respite care and have contacted the local Alzheimer's Association. Everything's going to be ok...I just keep telling myself that.

Patti

IP: 209.246.213.103

GRM4LOVE
Moderator
posted 10-26-2002 09:52 PM     Click Here to See the Profile for GRM4LOVE     Edit/Delete Message
Patti M... you have a heart of gold.. as for Aunt Bert... you may never know who she was connected to ..maybe those who had passed over..many souls come around to help others on this plane to let go when it is near their time..unfortunately we treat people with alz and want them to come back into our world not recognizing that their soul is still in tack and knows and understands all the love, the caring and gentle touching... while the mind no longer is in tact...keep us posted...sounds like you have a good understanding and are making wise decisions and choices for all concerned...

keep us posted and hope to see you in the chats

richest blessings
gail

IP: 66.108.75.139

Jann
Member
posted 01-25-2003 07:47 PM     Click Here to See the Profile for Jann     Edit/Delete Message
Hello. My name is Jann & I have been caregiver to my 85 yr. old mom for the past 4 years. I am the youngest of 10 children & am not close to any of my siblings as I was born late in life to my parents. My dad died before I was born so my entire childhood it was just my mom & I. I also have 2 grown daughters & a wonderful supportive husband. I gave up a career that I really enjoyed in order to take care of my mom as all of my siblings refused. I don't regret this at all even tho I miss my job & we have had to make changes in our lifestyle to be able to manage on one income. I would do it all over again in a second as I have enjoyed my time with my mom. My problem is that after 4 years without so much as a day off I can tell that I am really getting burned out. To make matters worse I am in a very small town without any type of support group etc. My husband's job (longdistance trucker) requires him to be away from home days & sometimes weeks at a time so it is impossible to schedule any type of regular outings such as church etc. My siblings answer to helping with mom is to call her every 6 monthes or so & come see her every couple of years for a few days. But when they are here they refuse to be tied down by her care as they are on "vacation". I would be very interested in any ideas on how to deal with them & also how to deal with the stress that constantly being on duty is creating in my life. I love my mom & want to make what she has left of her life as comfortable as possible & feel very guilty over the feelings of resentment that I have started having over how this has completely taken over my life physically, emotionally, & financially.

IP: 207.32.13.222

PrairieGal
unregistered
posted 01-26-2003 08:57 AM           Edit/Delete Message
HI Jann...welcome to the messageboards...

I can sense your tiredness just from your message...I have to admit I started feeling just like you into my third year as my mom's caregiver too...our bodies can handle just so much stress..
I was an only child so didn't have the siblings issue but I do see by other's posts on here that it is very common in larger families..some just don't want to give up any of their "life", some just cannot handle any deterioration of their parents...
Do you think it would be possible to set up a family meeting between all your siblings and a social worker or clergyperson there as a "third" party...you say you live somewhere where there isnt much help...but I feel you need to try something to get some time off..
it may be worth it to try something like this..
How far is the nearest larger city to you? Perhaps their home care agency can send someone out to you on a once or twice a week basis? You may have a bit of an extra charge for mileage but it may be well worth it.
I hope you will post again...and if not too tired take in some of the chats...just sharing with others is a first step in easing some of your pain and stress...
take care...
PrairieGal

IP: 24.66.94.142

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