Thursday, February 16, 2012

Caring for our elderly parents

I know this isn't exactly quilt related but I wanted to start a discussion with you, my friends, about the issues we will face caring for our elderly parents. I know so many people whose parents are in their 80s and 90s and the care ultimately falls on our shoulders.  It's such a daunting task to have to bear, although for some, they may cherish the opportunity to give back.
I think for many, though, there are very mixed emotions.  Our parents weren't always there for us, or they weren't the kind of parents we would've liked, or they have taken more than they have given. Believe me, I'm there.
But there really is no way around it. These shoulders have been strengthened over the years probably in anticipation of being ready when the time came to be there for our aging parents.

I think the other thing that weighs in on all this is the state of medical care.  I think doctors are programmed to do everything, at all times, to save the patient, regardless of whether it's really in their best interest in the long run.  I don't think my mom would've wanted to be bedridden, as she is now, or so dependent on others for her care.  I personally know that i wouldn't.

At the very least, this has caused Mark and I to discuss the issue between ourselves and actually has motivated us to fill out the health directive forms now, when we're healthy.

I'm curious to hear if others have been experiencing similar issues --- it's a real problem today and something that's such an exhausting and overwhelming task. It'd be nice to hear other people stories.!!


  1. We are what is known as the "sandwich generation"--caught between caring for aging parents and helping with grandchildren. For me, I am a lucky one, I guess. My parents, both in their 80s and living independently but unable to do everything for themselves, were all you could hope for in parents. I was loved, cared for, encouraged, spanked, and scolded, but always with love and concern and with reasonable limits. Though it is draining at times and not always convenient, I am grateful to be able to give back some of the tender care I received. My admiration knows no bounds for those of you who step up and give the needed care to parents who did not care for you as they should have. I watched my sister-in-law do that for her mother. The irony is not lost on all who see and know the situation. My parents have signed all the necessary papers to make sure they are not revived when the time comes. It is something to think about. When DH went for a colonoscopy recently and they asked if we had a living will I realized that we have some paperwork to do.

  2. I could probably write a book about my experiences with dealing with my parents. My father passed a couple of years ago, so I only have my mom to deal with now. I will just say that I feel guilty that I don't/can't do more for her, while also feeling resentful that nothing I do seems to be good enough for her or makes her happy. I just have to remember that if someone wants to be lonely and unhappy, there's nothing you can do to change that person.
    This is probably not what you are looking for. I just wish you the best in caring for your mother.

    1. Hey anonymous, you said it perfectly that if someone wants to be lonely and unhappy you cannot change that. Nothing I do is "right".

  3. We are building a house this fall and will be building a suite onto it for my mother. Something with a full bath, kitchenet, sitting area and sleeping area. My mom does not need it now, but she is in her sixties and I want her to have a place to go when her husband dies. It will be the last part of the house that we will build. To be honest, I would not want her husband here, and he wouldn't want it either. My dad is in his 70s and whne he passes I'm sure that my stepmother would go to live with her daughter. I would not put my mother in a nursing home as long as I could take care of her. They are too depressing!

  4. I really can't relate to caring for elderly parents, both of mine died being just a few years older than me.
    All around me I see it with friends. Just my opinion but I think in some circles family has gone to the wayside.
    Anyone no matter if their parents were the best or the worst truly have a job before them. Whether it be a labor of love or responsibility, my hat is off to them.

  5. Both of my parents are deceased. But now I am dealing with a husband who is mid stage dementia. Before he became this ill we had many dicussions about how we wanted our life's to end. No rescues, just let nature take its course. For me the hardest part of this journey is I have lost my partner and now I am caring for my husband as a tottler. I will keep him at home as long as possible and will always love and care for him until the end.

    1. My mom looked after my dad for several years, he had dementia and Parkinson's. I could tell it was wearing her out, so when my dad broke his hip, I told her that he wasn't coming home. We placed him in a nursing home. She went over twice a day to feed my dad for the 12 years that he lived there. She got the rest she needed and still saw him every day. Care taking does take a toll.

  6. My mom's doctor may be the opposite. It has actually helped me see that doing too little may be better for a patient with Alzheimer's.

  7. You are not alone, Randy, and you are right. Many of us are in the same position. Every family dynamic functions a little differently, and what works for one does not work for the other. Mike and I decided years ago that we would care for our parents to the best of our ability, and God has strengthened in that task. My dad passed 20 years ago, and he was on my couch with me holding his hand. He didn't suffer, and even though I didn't get much sleep for a few days during that time, it is precious to me. My mom passed about 121/2 years ago, and because she had the foresight to be VERY EXPLICIT in her instructions in her directive, when she had her debilitating stroke, my brother and I were able to take her home and let her pass in peace. It was a difficult 2 weeks, but again a precious time. 12 years ago we moved our family of 6 into a 16'X40" cabin in order to care for Mike's parents - Dad with severe dementia and Mom with severe injuries from a vehicle accident (there is more about this story in the side bar of my house blog ( Mike's Dad passed in 2003 and again we were able to assist with hospice care in his last days. Mike's mom is 96, and is now living in an assisted living facility (by her choice). I don't tell this story to pat myself on the back, but to just say that you are not alone! I agree, sometimes doctors and/or society deems that we keep each other alive at all costs, and Mike and I have been Very Explicit in our directives - if nothing else so our children will have peace of mind that when God is ready, we are ready!

    Wow, I'm sure you didn't need another sob story, but for some reason it feels good to get it out there! It is a thankless job to care for aging parents. But God sees in secret and knows our hearts. I'll be praying for you in this time! Blessings

  8. My parents are deceased, and I did not have to care for them because they were able to live on their own until their last trip to the hospital, but I have seen and heard stories of very, very difficult times with aging parents, so I am with you, I have my papers ready so that my life will not be prolonged when it's time to go. However, I am concerned about being ill and bedridden for a long time. I wonder if ideas/ideals will change which might give us options in the future . . . .

  9. My dad passed away just last month and my mom just 20 months prior to that. It has been an exhausting couple of years and a constant roller coaster ride of emotions. At the end with both of them we were blessed by the angels in a hospice program here. No more poking, prodding, running more tests, and more poking when nothing was going to change the end result anyway. They were both in an inpatient hospice facility when they passed because that was where they needed to be. As the only daughter I felt/thought that it was my responsibility to take care of them but reality, in the form of my wise husband, spoke and said that I needed to take care of myself first. It's a hard, hard time no matter what the final decisions are.

  10. My friends are all in our early 50's and have lost our mothers in the last few years. My dad is healthy, 77, has a lady friend, travels to AZ for the winter, etc. BUT the time will come and I have already told him he can move in with me and stay forever. I could never do enough for my parents to give back what they have given me. No one could be blessed with any better parents, we were loved, scolded, spanked, read to, encouraged, praised and given VERY little in the monetary sense. Best thing they did for us, taught us all the value of hard work, getting and keeping a job, looking after ourselves and those close to us.
    However, my late husband had a horrible mother who I just couldn't help, because no matter what we did, it was never good enough. And yet my DH could not stop trying. Always thought he would get different results, I guess that's a childs unconditional love? I don't even know if she is still alive. She didn't even ask about a funeral for her son, I think the devil doesn't even want her and thats why she's hung around for so long.

  11. I too could probably write a book on caring for an aging parent. My husband is 25 years old than I am, so that put me in the position of having an elderly set of in laws and young children of my own at the same time.

    We sacraficed our home and comforts to move in and take care of my MIL in the last year of her life. Looking back, it was tough, but so worth it. I treasure that time more than anything as I became her main caretaker (while still raising children and working full time). I am not her only daughter in law (there are two others - one that lived right next door to her) but she had no daughters of her own.

    My best memories are sitting with her at night, reading her Bible to her and just talking. One night just days before she passed away, she reached out her hand for me to hold and told me "thank you. thank you for bring my son back to being close with me, thank you for loving me, and thank you for taking care of me. you didnt have to do this but you did it with an open heart." No matter what we had to go through and "give up" those words made it ALL worth it to me and I will NEVER forget them.

  12. It is hard for me to write this. I was adopted by an abusive parent and was told through my childhood that she adopted me so I could take care of her when she got old. She got Alzheimer's and moved in with us when my children were still small. She proceeded to then abuse my son (my daughter kept her distance). This went on for almost 10 years. Finally, I had to put her in a Rest Home, but still took responsibility for her. When she died of heart failure, I said "Thank God it is over". I now have a Living Will, and never intend to do that to my children.

  13. Stages of Life:
    We come into this world as our parents' children.
    We grow to become our childrens' parents.
    We age to become our parents' parents.
    We leave this world as our childrens' children.
    All stages of life are filled with so many blessings and burdens.
    The best thing we can do for our children is talk to them about how we feel and put it in writing. Blessings to all . . .

  14. Both my parents died in their 50's, so i can only comment from the perspective of caring for my Mother in Law.... She rang the morning of my husbands 50'th birthday, not to wish him happy birthday but to say she couldn't live alone anymore. (Her husband had died 8 years previously) So we sold our home and hers, bought a house with potential for a "granny flat" and moved our 3 teenage daughters in. We created a fully self contained unit for granny.
    A very LOOOOONG 10 years later after a few falls resulting in her breaking her arm we moved her into residential care. She died 3 weeks later. She had often said the only thing that kept her going was the vegetable soup i made for her. She may have been right as the cause of death was complications from a bowel blockage. She had consented to surgery, so at the age of 94 she underwent major abdominal surgery. We had never discussed with her advanced directives or medical power of attorney and so when complications set in and further surgery was suggested we had to "lock horns " with the doctors to invoke "good palliative care" orders, prevent further surgery, which involved amputating her leg, and just let her go.
    It was a very difficult time.. the whole 10 years and i would advise someone to go ahead and do it ONLY if you genuinely LIKE the person, never out of duty.
    We have discussed our wishes with each other and our children and hope that none of us is placed in that situation again

  15. I totally agree; my Mom has been in a Memory Ward for going on four years now. She is frustrated, unhappy and so are we--at 92 , she feels that she never wanted her life to go on in this way. We find ourselves saying, despite our loving her so much (and maybe because of that), "What is the point"? We sold our house after we retired and moved in to care for her when my Dad died. My husband and I cared for her in her home for 4 years; but there comes a point when a person needs 24/7 care and homecare is no longer possible.
    My heart goes out to you and your family--as an only child I am trying my best to do what is right for us all. It is a difficult road..... she is failing weekly and the indignities that she has had to endure as her body just really wears out are very hard for both of us..... This is a tough one for sure...
    I will tell you this, I do not want to go down that road....Julierose

  16. Our family has been through dementia with my Mom and her oldest sister. They have both passed away. My Dad has multiple health problems but still live in his own home. My sister and I try to do whatever we can for him. And it ain't easy some days.
    This post has been a good reminder that my hubby and I need to get our papers together and signed.
    After years of being a nurse, I feel that just because a treatment can be done doesn't mean it is the right thing to do.

  17. Be sure and watch the PBS special on the web "How We Die". EVERYONE should have a living will and DNR. I took care of my parents for the past ten years. My dad died in his own home and my Mom moved in with me for 3 years before she died at 95.
    The doctors want to do whatever is possible regardless of the outcome. You have to be in charge (power of attorney). Always ask the purpose of treatment and how it will affect the outcome. Just remember you can prolong dying as well as living. Talk to your parents and find out what they want so you can enforce. I didn't want my parents dying in the hospital which 80% of the elderly do. it's a hard job any way you look at it. I didn't have kids at home and I was retired so mine was a cake walk compared to some people. don't forget to do something for yourself. I went to the quilt store and worked on the reward system! Prozac helps too:) Don't second guess your decisions. You did your best at the time.

  18. I write this with a heavy heart. When my mother was in her nineties she came to live with me and my family which included two school-age children and my husband. Everyone was supportive of her moving in. I gave her
    my sewing room and gave up sewing. There were good times and there were bad times. There were times that I would come home from work and find mom's poop all over the bathroom and once there was a "dump" in the hallway. Since I worked full-time, I had a neighbor come in during the day to see to her needs and I would come home at noon to provide lunch. My mom mostly stayed in her room in bed. It was a sparce environment for her. Soon my house began to smell and my children no longer had their friends over for play. After a few years of this, my brother and husband convinced my that she needed to be in a home where full-time care could be provided for her, and after much soul-searching I consented. We selected a "Catholic" home that came recommended. To this day, I have never forgiven myself for making this decision. I later discovered the home was "unpleasant." She passed away three months after leaving my house. Although she was surrounded by my siblings and did not die alone, I cannot forgive myself for not having the strength to keep her with me. I pray that she forgave me. I will pray that you will make the right decision about your parent and what is best for you and your family.

    Affectionately - Terry

    1. Terry,
      you did your best at the time. The doctors even told me not to second guess yourself. Of course if you knew then what you know now you would have done things different. forgive yourself. your Mom would have wanted you to.

  19. Hi Randy, Sorry to hear you are having some tough times right now. I can identify so much because my Mama is currently in a nursing home. She originally went there for physical therapy so she could go back home, but she still needs 24 hour care and none of us children can provide that because of jobs, etc. She often needs 2 people to help. We never wanted her to go to a nursing home, but it was inevitable. She can't eat the food, so my siblings and I take her food for all her meals. I visit every day, sometimes 2 or 3 times a day. Before she went to the nursing home we took turns spending the night with her and were there during the day as much as possible. Caring for an elderly parent while trying to maintain a homelife is one of the hardest things I've ever done. Its a labor of love, but its still hard. And I never feel as if I've done enough. She deserves more than we can give. We want her final time on earth to be happy, but as my wise brother in law once told me, "sometimes happiness isn't an option".

  20. I retired last year, at 53 because I could see that my mother, who had moderate dementia would need more care than my stepfather could give her. I was lucky enough that by that time I had worked 33 years and had full retirement. We had tried to get my Mom to sign an advanced health directive but by the time we tried talking about it, it was really not something she wanted to talk about although we'd had discussions years before they even had such a thing and as it turned out, she'd had the same conversations with my sister and brothers. My Mom had an accident in December that resulted in her death. The doctor at the hospital was wonderful in laying out the facts for us. He thought it would be cruel to provide extreme life saving measures beccause if she recovered she would never leave a nusing home and with the dimentia she would not be able to properly care for her wounds and the recovery would take many surgeries over several years. I know the doctor was right and she would have hated living like that but I wish she was still in my life. Selfishly I wish she was still alive but with her memory intact. She was such a special person. I feel a little at loose ends now because in my mind I figured we'd be caring for her for at least 10 years. In going through her papers I found a will that she had made the year her mother died, in 1994. When I started thinking about it that was less than 20 years ago...not long at all. I guess a parent's death hits home and makes us realize that we are all aging and these are important decisions we need to make others aware of. My step sister is going through a lot of things now too with my stepdad. I think he's always been so in charge it's really hard for him to have others do things for him and he comes across a lot of times as ungrateful but I don't think that is what he intends. Caring for an elderly parent isn't easy no matter if you had a good relationship with them or not. No matter how good your relationship was, there are days that you feel guilty that you aren't doing more; at the same time resentful for the time you have to spend caring for them; angry that your siblings aren't or can't do more and even more angry and sad that they have to be in the situation they are in; and guilty because of all those negative feelings. It's all just a mixed bag of emotions. Part of being human I guess. My advice to anyone is to take care of all the legal issues now while you can make those decisions for yourself and if you can afford it buy long term care insurance. Thanks for the opportunity to vent!

  21. Both my Mom and Dad died at home. They lived with my sister, so she was with them and since I live 1000 miles away, I wasn't there very much. My Mom fell and had a difficult recovery. She died 8 months later. I spent as much time there as I could. We had to hire a live-in care giver because Mom would wake up many times during the night. She was confused a lot and would say, "Shoot me!" We told her we couldn't because we didn't have a gun and we didn't want to go to jail. It was very sad and difficult. No extreme measures were taken to keep her alive as her heart was strong. She was 92 when she died and we were grateful that she and Daddy were able to die at home. Dad was sick for about 6 months, but not bedridden that long. It's a difficult time, and we can only hope and pray that when our time comes we will go fast and not be a burden to anyone.

  22. Oh my, did this hit home with me. I came to your blog through a woman in my guild. I don't know her well, but we were making arrangements to get together when I go to visit my mom in the independent living facility that she JUST MOVED into last month. My friend suggested that I might be interested in participating in your quilt along and so here I am.
    My mother was diagnosed with CHF and COPD four years ago. She had a breast removed last year. She lived alone on a 5 acre mini ranch on the ourskirts of Sacramento and had 20 odd llamas still left from her original herd, plus ranching equipment,a studio full of spinning wheels, yarn, looms, and a 2400 square foot house full of furniture, linen, china, needlepoint, paintings, etc.
    My mother has not always been supportive or affectionate. She is a strong personality. It has been very difficult to argue?, nag, guide, help her through this time in her life. My brother has been of little help and I live alone. I have been infuriated, saddened, frustrated, confused and of course I have considered how soon I will face my own end of life issues.
    It is so true that I look at my belongings with a critical eye, the collection of 58 years, much of which is beautiful handmade items from my dead relatives and cherished items from the 'old country'. My own children do not remember the people and memories that these items represent.
    I worry that I will be difficult for my children to deal with and wonder how I can make this easier for them. Maybe it is just hard no matter what,it is yet another of life's lessons...

  23. I have ordered the Farmer's Wife book and will sew along. I see blocks 4-9 ..... But can't find 1-3. Are they gone from the blog?

  24. My mom is 95 and usually pretty good but it is still hard. My brother moved home to care for her and it has proven to be a challenge. I understand mixed feelings since she was not always kind to me and I still have difficulty with that. My hope is that I learn from it and not repeat the problems for my kids.

  25. Very well said, Randy! Our grandparents have been the ones who are taking so much care of us and our beloved parents when we were all so young. They never let anything bad happen to us no matter what. And now, when our dear grandparents are getting a lot older, I think it is about time for us to reciprocate that and take good care of them and make them feel loved and protected no matter what.

    Floella  Mccullough

  26. I prefer that I’d be the one to take care of my grandparents. This is my way of giving back to them the love that they had given me. Anyway, it’s my personal choice to take care of them and I won’t blame others if they can’t do the same way. We have our own ways of showing love and appreciation to our loved ones.

  27. Hey, Randy. I'm glad that you opted to take care of your mother. This is the best - and I think the only way - to give back to her, to parents. When we are old, we become fragile physically, mentally and emotionally. Although we cannot give them back their once strong bodies and their wit, we can help make them be emotionally stable by being with them and showing them how much we love them.

    Taneka Carl

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