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Time: 08:33 AM
I was primary caregiver for my father who died recently at the age of 91 for the past two years. My husband was my primary source of support and did as much caregiving as I. I could not have done it without him. One of the greatest lessons I have learned as a caregiver is never stop asking for help and advice.
My husband, sister and I write about our experiences at Inside Aging Parent Care www.desperatecaregivers.com
Name: Charlotte L
Time: 03:08 PM
We have 3 daughters and 2 sons. Our oldest son has a rare form of stage 4 lung cancer, we found out April 26th, it is neck and lung.
Since than I have been doing most of the running, but our children help a lot. Our 3 daughters live out of state. Not very close either. They each take a long weekend to come to help out. They send me off to go to the lake with my husband or when they come they make sure I take some time off for myself. I love for them to come, they lift Bob's spirits, they go in his room and make him feel it's his home, or they are just there for him. Each one is different so they have different ways of keeping up his spirits and ours, too.
I hope this will help some families know that they should help out when and if they can.
Our daughters all have families and work: they are from the UP of MI, WI, and NC so you know it takes them 10-15 hrs to get here.
Our youngest son lives about 10 miles & comes as often as he can, he has a business and a family, he calls, sends texts to Bob, stops in and encourages me and Bob, he also comes to the doctors with Bob and me.
That's what family is all about.
My friends call to chat sometimes just to say I thought that you needed a little chat and to let you know that I love you. Those 3 words lift me up. Just for someone to say I thought about you today is enough to give one energy to go on and do it for the one you love.
My biggest help was when a friend told me about CaringBridge -- I journal in it everyday or night -- just telling family and friends what is going on in our days. That was a God send from my friend Ginger. Friends and family write a note in it for our son or for us too. It's good to read all there thoughts.
It's a great outlet.
Take care and let me you if any of this is of help.
God Bless and thank you for this another outlet for me
Time: 10:09 PM
My only sibling lives very far away and is very successful in life. My life has been less fortunate in that I suffer from chronic depression and have limits. I work part time and it was really pushing myself to accomplish that much. I have no family of my own. I have one girlfriend I have seen once since becoming a caregiver. Because of my low income, I have a work exchange for part of the rent where I live. I've lived here five years.
My sib and spouse have come three times since the caregiving started two years ago. I care for three elderly relatives. One died recently. One is grieving and one is beginning to have significant confusion. I have burnout, but it is, of course, my fault because I'm not focusing on the "good" in my life. Apparently I don't really need help because I'm just doing it wrong. My sib comes to help and does help. But what is done doesn't relieve me, it just gets the things done I can't get to. That is wonderful, I praise and bless and offer thanks constantly to let my sib know how much I appreciate the help. The problem is, my routine, my grind, my caregiving tasks are never alleviated. I do have days off where I am prostrate from exhaustion. I cry all the time. I'm having a terrible time at work because I can't seem to manage my job anymore. My sib is helping, but it isn't enough help. And while my sib is here, there is time for recreation and activities I'm either not invited to or not able to do because I"m still trying to get through everything I do every week, or I can't afford to do those things, even though I desperately want to. I resent that the sib with the most money, time (my sib is retired) and health dabbles in the caregiving and absolves theirselves from doing more because it's just my fault for not doing it right. I am in debt, exhausted and lost my ability to care or enjoy. There has never been an acknowledgement of my limitations or any attempt to understand how I'm affected by depression, or that I have limited access to care because of money. I have clearly expressed these things and I have asked for my sib to come live here to help. I have made lists and let them choose what they want to do. I have not been paid, but I have been given money for expenses that doesn't quite cover the costs. When I ask for the real cost, I'm not believed it could cost that much. My sib does pay for a cell phone. That is invaluable.
If I were to suggest a strategy. Thank, praise, express gratitude. Praise their strengths and sacrifice and hope they feel good enough to come back. I do not criticize anything that is done to help me. If it causes me more work or costs me more money or duplicates my effort, I just remember that maybe I would have had to do it myself. And I couldn't have done it. Anything they do helps. It will never be enough help.
Name: grammys caregiver
Time: 07:47 PM
Good question! Exactly what I came to this site to find help with. A year ago when my grandpa was dying they all came to visit. Once he died... it's like they all disappered... as if she died with him.. but she didn't she is very much alive. She's independant and just needs to know she's loved. How can people justify seeing the person dying, but not the healthy one left behind?
Time: 02:12 PM
I have been caring for my dad, who was in the hospital for two years, with the help of my brother and sister since January. He has some extreme medical conditions - so help has been crucial. Because of tpn and other things, my dad has been unable to get home health care except for a weekly visit (they have no protocol for a lot of what needs done, or are not allowed to do so... ) - just know that in all cases, especially time demanding situations like my dad's, there will be disagreements between helpers - the best way to work it out, I have found is to ask for help, and realize that you may not always get it. If not, ask for another time. . .talking it over and working between everyone's schedule is vital! You would think everyone would just KNOW you need help - and maybe they should, but often they don't realize it if there is one person acting as primary caregiver that help is needed.
In my case, I have two children and a hubby who works away, and my dad just recently moved to his house again - which is a MAJOR achievement in our case, and it has been stressful at times, but I look at every minute I get to spend with dad as a blessing - and I view the time I give as something I am GOOD at and proud of - remember you love the person you are caring for. . .although at times it feels like you don't have time to breathe - you only get one chance to care for the person you love!! The ones that don't help - they are the ones missing out on the opportunity. . . Keep supportive people around you that you can talk to about all the happenings.
Time: 02:14 PM
I have been caring for my 96 year old grandmother since 2002, and I have asked my siblings for a little help, or even to give me a break by just visiting with my Grandmother so my family can leave the house, but they would never help. I never stopped asking so they have stopped talking to me or my Grandmother altogether.....
The are actually becoming more spiteful and vindictive as the years progress....
Location: Anywhere USA
Time: 05:18 AM
My best advise on this would be to not fall into the same situation that I did. I let pride stop me from asking for help from my siblings because I felt that I should not have to ask. They all knew I was struggling to care for mom and dad who both had Alzheimer's and I could not believe that they were not offering to help. I worked full time (as the director of an assisted living and memory support unit) and passport came in to stay with mom and dad until I returned home. Then I worked for the rest of the night (sometimes into the morning) to care for them. I held alot of resentment and anger towards my siblings and did not ask them for help. Ofcourse this gave them a perfect excuse as to why they did not help."Well, you never asked us to help. How are we suppose to know you needed help?" If I had it to do over I would ask them for help and be very specific so that there were no misunderstandings. I would set up a schedule and make sure that all my siblings had at least one thing that they were responsible for doing every week.It is true that if you don't ask no one will know what help you need. Good luck and always remember that your care is appreciated by the person you are caring for even though they can not always put it into words. God bless
Name: Linda Derrick
Location: New Baltimre, MI
Time: 04:22 AM
Oops! I didn't mention my caregiver support group and journaling that have also helped me maintain my sanity. Invite them to a support meeting or educational seminar that many conditions/diseases have available. Send an article about respite care or another related topic.
Good luck and remember to take care of yourself - if you burn out or get sick yourself, you won't be able to help your loved one.
Name: Linda Derrick
Location: New Baltimore, MI
Time: 04:17 AM
To Nancy and other caregivers who have family that won't help:
The suggestions I've seen (and tried) to get family to help include asking for specific help - either tasks or financial, asking for them to manage a specific area of care (home maintenance, groceries, etc.), having a family meeting to discuss it all, getting a trusted relative or friend or cleric to help co-ordinate, and going to counseling.
Unfortunately for me, none of these have produced positive results. Now they refuse to go or some to even talk to me.
Give them a try - it might work in your relationship/situation. Just because it didn't work for me doesn't mean it won't for someone else. I have the peace of knowing that I've tried everything humanly possible to get them to help & reconcile the family - even being so graphic as to point out that unless they do something to reconcile, the next time we'll all be together will be at Mom's funeral. I'm Mom's primary caregiver, yet I'm not invited to family birthdays, baby showers, or even weddings. And of course - it's my fault.
The bottom line is that family won't help if they don't want to. I've spent a lot of time over the last few years studying how to forgive, how to be forgiven (12-step processes included) and have repeatedly offered forgiveness, asked for forgiveness and for us all to go to counseling so we can work out these issues. They won't.
The Serenity Prayer is my lifeline, along with a wonderful husband, daughter & friends who have helped me accept that. It's not easy, it's wrong of them, but they will have to live with their choices.
My goal now is to BALANCE taking care of Mom with having a life with my husband and our daughter, and maybe taking care of myself a little bit. That's tricky in itself - continuing to try to get family to help interferes and has been more stressful than the actual caregiving.
You and your family are in my prayers.
Good luck, and may God bless.
Location: St. Louis, MO
Time: 01:08 PM
If you need support caring for your aging parent, please go to www.cooperativehomecare.com. It can provide caregivers for just a few hours a week to full time and help your parents maintain their independence while easing the burden on yourself.
Name: Linda Derrick
Location: New Baltimore, MI
Time: 07:29 AM
What has my experience been in getting family to help? TERRIBLE!
Mom was diagnosed w/Alzheimer's 7 years ago. We caught it early and her meds & me calling several times a day have allowed her to stay in her own home - the home she's lived in for 50 years.
I take care of Mom's finances, meds, doctors, taxes, groceries, home maintenance, etc. and have gotten blamed for being the cause of the family's problems.
When Mom was diagnosed, I asked my sister & brother to join me for a "family meeting." I explained the diagnosis and asked for specific help - for us to work as a team to help take care of Mom. I got verbal agreement, but when it came to the actual DOING of anything - they didn't come through.
I was angry and held them accountable. I didn't make personal attacks, I just continued to ask for help. When that still didn't happen, I asked an aunt & uncle to meet with us. My sister didn't come & wouldn't answer her phone for a confernce call, even though she said she would.
Again, I got verbal agreement, but no follow-through.
After that, I started attending a support group & spoke w/a counselor/case worker at the Alzheimer's Assoc. My siblings, 1 niece and I had a meeting w/her as well (I met separately with all of them because we couldn't coodinate a schedule for all of us to be there at once). Again, I got verbal agreement but no follow-through.
Since then, I have asked repeatedly for help, both specific and in general. The only times I got help were: from my sister when Mom was in the hospital and from my brother when I threatened to throw stuff away if he didn't help clear out her basement.
I went from asking to begging for us to go to counseling so we could work together as a team to help Mom. From my sister - silence. From my brother - arguing about the necessity for anything to get done. From my niece - accusations, excuses and verbal abuse.
My goal had been for us to work together as a team to help Mom. My hope was to at least open a dialogue. My fear was that nothing would change. The reality is that everything got worse. It was a faulty goal because it required someone else to do something to be successful.
My realistic goal is to balance taking care of my husband & daughter with taking care of Mom - and maybe taking care of myself a little bit.
I am no longer considered a part of the family: weddings, baby showers, birthdays, Christmas - I'm not invited, yet I make sure Mom is ready for these events with proper attire and/or gifts, which have occassionally been refused (by my sister).
My niece just told me I need to fix the past because of how many things I've done to hurt everyone. Even a suggestion for the family to all get together for Mom's 80th birthday was found offensive by this niece. Yes - really - she told me she was offended, then proceeded to tell me about 2 birthday parties for her son that Mom was invited to but I wasn't.
Many years of going to a support group, the love of a truly marvelous & understanding husband, researching forgiveness, prayer, suggesting counseling with someone they choose, offering to pay for it, asking for forgiveness and begging for counseling haven't worked in my family. I've exhausted the tips I've seen. I even went so far as to point out that if we don't get help, the next time we'd all be together would be at Mom's funeral, yet got ignored.
The truth is: family won't help if they don't want to, you can't "make" them, and you often get blamed. Finding the serenity to accept the things you can't change is very difficult, but with prayer, support and the love of my husband & friends, I'm getting there.
So, on to my specific dilemma: This niece just told me that I have to fix the past, and that will fix the family.
Any suggestions on how to do that when nobody will talk to me?
Love & prayers,
Location: Anytown, USA
Time: 02:21 PM
My mother has lived with us for 8 years. She's in stage 6 Alzheimer's. I do not understand why my sister and 2 brothers do not help more. If you are one of those relatives who do not help the caregiver, I suggest you make a few sacrifices of your own. Why not take a day or at least 4 hrs of one day per week and allow the ones who have put their life on hold a little free time to get out of the house to get groceries or just something to help them. It would be great just to take the dog for a walk or sit under a tree.
Name: Nancy Wofford
Location: Conneaut Ohio
Time: 05:50 AM
I have my 85 year old mother living with me do to her inability to live independently. I'm a nurse and have made ajustment in my life to make her very comfortable. I'm unemployed, have been for awhile. Very little income. I'm afraid to go to work because I will have to leave my mother alone for extended times. I have 2 sisters that live out of state and a brother that lives miles away. My siblings are all financially set, but no one will help. I've heard every excuse in the world. Mom has a small income SSI.She gives me $200./mt. I recently found out she is putting money into a savings account for my brother. Me and my youngest sister were the children that were not loved as much. I heard my mother tell one of her friends that she loved my older sister and brother more then me and my younger sister years ago. I can't afford to get someone in here to help with mom. Any tips on how I can get my siblings to help?