Service dogs are individually trained to assist people with disabilities in doing certain tasks. They can assist the visually impaired and alert deaf people. Service dogs can protect those having a seizure, calm veterans with post traumatic stress disorder, and even dial 911 in an emergency. For many folks, the cost of obtaining a service dog can be out of reach. That cost can run between $20,000 and $60,000. In the article, Life changing companions: how to afford a service dog, the authors address financing options. These include grants, fundraising, FSA accounts, and personal loans. They also list specific organizations from specific areas based on your individual needs. If you are searching for where to obtain a service dog and how to pay for it I highly recommend reading this article.
Medical alert systems come in the form of electronic necklaces and bracelets to help detect falls. You are connected to an emergency responder in the event of a fall or other accident where you require help. An active device requires you to call for help by pressing a button. Passive devices monitor lack of movement to determine an emergency situation. Here are the top ten medical alert systems according to The Consumer’s Advocate:
- Medical Guardian
- Bay Alarm Medical
- Mobile Help
- Life Station
- Medical Alert
- Phillips Lifeline
- Great Call Lively Mobile
- Get Safe
Visit consumersadvocate.org to read reviews for each company and to visit their websites. Then you can decide for yourself which system is best for you or your loved one.
Consumer Affairs also lists its’ Top 10 Best Medical Alert Systems, some which overlap with the above as well as additional systems that are not mentioned above. Be sure to visit their links to learn more.
Today’s post is Part 5 of 5, Helen’s story about her mother’s last days in my book, Final Years Stories of Parent Care, Loss and Lives Changed. Part 1 of my Chapter 5 excerpt can be read on my blog here: Mom’s Final Act Hurts Those Left Behind. Part 2 can be read at this link: Mom’s Final Act Hurts Those Left Behind (Part 2), Part 3 here: Nothing Was Ever Enough, and Part 4 here: Kids Shocked When 3 Million Dollar Inheritance Goes to Charity.
I Had No Attachment to Her House
“Clearing out her house wasn’t emotional; I had no attachment to this house or the stuff in it. It’s the house we grew up in, and as an adult when I visited, the memories weren’t all that pleasant.
We all pitched in. Every now and then there was something that one of us wanted, but not much. There was no conflict among us. My daughter was so upset over what happened that she wanted nothing. One grandchild wanted some things and I said that all of the grandchildren should have some things then. One brother hired a mover to take the furniture. When I left, the feeling was surreal—that’s the only word I can use.”
Resolving Her Grief is a Complicated Process
Are you able to move on, to resolve your grief and feelings of betrayal?
“I feel sort of stuck right now. I’m really sad for my mom for her inability to love all of her life. And I’m angry at what she did to us and the position she put my daughter in. It was just such a shock. It’s hard to really grieve for her when this was her last act towards us.”
Helen doesn’t feel that her grief is normal because of her anger. She is considering seeing a therapist to help with her anger.
Might you have felt differently had your mother shared with you all ahead of time her plans to leave her money to charity, and her reasons for doing so? For example, if this had really been something in her heart that she wanted to do?
Are you certain it was a hateful act? Was your mom philanthropic when she was alive? Could there have been a positive motivation?
“No,” she said, with soft emphasis and sadness in her voice. I could hear bewilderment in Helen’s tone, as though she is still trying to figure it out.
“I talked to one of her closest friends of 50 years to try to gain some understanding of why Continue reading
Today’s post is Part 4 from Chapter 5, Helen’s story about her mother’s last days in my book, Final Years Stories of Parent Care, Loss and Lives Changed. Part 1 of my excerpt from Chapter 5, can be read at this link on my blog: Mom’s Final Act Hurts Those Left Behind. Part 2 can be read at this link: Mom’s Final Act Hurts Those Left Behind (Part 2), and Part 3 here: Nothing Was Ever Enough.
Mom Begins 24-Hour Care
“One day—oh, this was when she almost died. I don’t know what happened. I think she was dehydrated, and she literally couldn’t get out of bed. Her neighbor had a key to her house and went and found her and called 911.
They came and started an IV and rushed her to the hospital. Her blood pressure was something like 60 over 30. She had a fever of 103. She was almost dead. She was septic. And I got a call that morning and jumped on a plane. I got there when she was still in the emergency room, and the doctor came out and said, ‘I’m not sure your mom is going to make it. She’s very, very sick.’ I was hysterical. I was afraid she was going to die in the ICU, which is so undignified with all those wires and tubes. You know all about that, being a nurse.”
“But I called all my siblings … At 6 p.m. she was in ICU, and I was sitting beside her bed. I said, ‘Mom, I have to leave and go to the airport and get my sister now.’ And she said, ‘I think I’d like some oatmeal.’ I said to myself, not to her, ‘my sister is going to be furious when I pick her up and tell her mom is asking for oatmeal,’—because we really thought she was going to die! It just struck me as really funny, at the time.
But she got better. That’s when we hired the 24-hour caretakers. Mom wanted to stay independent in her home. But after this hospitalization that followed a second type of chemotherapy where she lost her hair and got so sick, Mom said, ‘no more chemotherapy.’ That’s when she agreed to the plan my sister and I came up with for 24-hour care and hospice.”
“She had 24-hour care the last 3 months of her life, beginning after this episode when she was rushed to the ER and almost died. After that she agreed to stop chemo and hire live-in help. Once she went on hospice—she had to stop chemo in order to qualify for hospice care.
What was your experience like with your mother’s physicians and care providers?
“Mom had Kaiser health care. She could e-mail her doctor to communicate, but I couldn’t. I had to wait until I got back home to hear back from phone messages that I left with her doctors. Mom loved her gastroenterologist. He came to the hospital to see her, held her hand and said, ‘I’m sorry, there are no places left in you to put in any more stents.’ He was regretful and caring.”
Last Moments With Her Mom
“One of my brothers was planning to be there over Christmas, so that she wouldn’t be alone. I think he got there the 20th or 21st. I’m not sure. But he called us all on the 23rd, and he said, ‘Mom’s not eating anymore.’
All along, even though she was losing weight and getting weaker, she had this great appetite. She was a foodie. She would tell us exactly what she wanted to eat for every meal. It killed her when she couldn’t be in the kitchen supervising us. It just killed her. And we were so relieved once she was not standing there telling us what to do! ‘Did you put salt in my oatmeal?’ She would say. Really …
So Mike called us on the 23rd, and said, ‘I think you all need to come. I think this is it.’ We just had had so many false alarms. But my sister and I flew out Christmas Day. I think it was a Sunday. She had stopped getting out of bed as well. Up until when my brother called us, she was getting up out of her bed and getting dressed every day. Not by herself—she needed assistance. And she refused to get back in her bed before 10 o’clock at night. She’d sleep on the couch. She hung out in her study. So it was just the last five or six days of her life where she quit getting out of bed. She didn’t have the strength. And she quit eating, so we figured he was probably right.
We all went. We had cousins in the area, and that day we made a nice dinner for Christmas. Mom didn’t want to come to sit at the table with us, but she did agree to get wheeled out in her wheelchair for some apple pie. I still remember, I brought her—I put a piece of apple pie in front of her and she looked at me, and said, ‘Where’s the ice cream?’
I said, ‘Seriously, Mom.’
I got the ice cream. And she ate about two bites of it and wanted to go right back to bed. She was not conversing with us. She was really not herself. She went back to bed. That was the 25th. My other brother, Jim, did not get there until the evening of the 26th, Monday. He’s the one who is just a year older than me. And she’d been sort of in and out of consciousness all day. I ended up having to flush her drain; she had a biliary drain, because the tumor was causing blockage, and it wasn’t draining well. The visiting nurse wanted us to go have it changed. We said, ‘she’s not strong enough to make a trip to the hospital. That’s insane.’ She said, ‘well then you’re going to have to flush it yourself because I can’t come out three times a day.’ So I had to flush her drain a couple times that day.”
Was it hard to play a nursing role?
“I didn’t mind that much. To the very end, she refused to use diapers. She would not do it. We had a little bedside commode. On the 26th, I have a vivid memory of helping her up to sit on this bedside commode. We also had paid help 24 hours a day. She had somebody taking care of her personal needs. So she and I got mom up on the commode, and she—she couldn’t even sit on it. She was falling off, and I was holding her up. It was just miserable. I remember the helper looked at me and said, ‘We are not getting her up again. This is ridiculous.’
I do not think she ever—we got diapers and put them on her, but I don’t think there was ever—I don’t think she ever went to the bathroom in a diaper. She just was too proud, you know.
Anyway, the evening of the 26th, my brother Jim showed up. We warned him on the way home from the airport, ‘she looks really bad.’
He walked in and tapped her, and he said, ‘mom, I’m here.’ She opened her eyes and reached up. She had the biggest smile on her face—I’ll never forget it—she was so happy to see him. It was very touching. That was maybe 8 or 9 p.m. on the 26th.
My mom didn’t have room for all of us. My sister and I would stay all day and then go sleep at my dad’s and come back first thing in the morning. That day had been pretty emotional. I just had a feeling it was going to be any minute. I had my iPhone and was playing some beautiful Andrea Bocelli for her. I put it on the pillow by her head real softly, and I put my cheek next to hers and I cried. I felt super sad, and at about 10 o’clock that night, my sister and I decided to go. My brothers were both there; we were all sitting around her bed. I said, ‘Mom, I’m going to go sleep. I’ll be back first thing in the morning.’
And her very last words to me … Continue reading
In today’s post I share Part 3 from Chapter 5 in my book, Final Years Stories of Parent Care, Loss and Lives Changed. Part 1 of my excerpt from Chapter 5, can be read at this link on my blog: Mom’s Final Act Hurts Those Left Behind. Part 2 can be read at this link: Mom’s Final Act Hurts Those Left Behind (Part 2)
Nothing Was Ever Enough
“My mom lived with pancreatic cancer for eighteen months, which was a lot longer than any of her doctors predicted. They said three months without chemo and six to twelve months with it. And she lived eighteen months. So it was—it was grueling.
When there was an emergency, I was usually the one to go. My mom said that she liked having me there better than the other kids because I knew what to do. My brothers seemed helpless when they went back to help her. She told me I was the best caretaker, and it’s probably because I’m a nurse. ”
And that makes sense.
“Yeah. And that was a nice thing to say, but nevertheless, it still wasn’t enough for her.”
How often did you go to be with her in those eighteen months?
“Twelve times. And that was never enough. Even that was not enough for her. All of her friends, after she died, remarked to all of us kids how remarkable it was how we rallied around and spent so much time with her, and how we all came out a lot, but in her mind we weren’t there for her.”
Isn’t that amazing? It sounds like the glass was half empty versus half full.
“It totally was. Her whole life was that way.”
That had to be so difficult for you both as a younger child and as an adult. To never have that acknowledgment, that, ‘Oh, thank you for what you did for me, thank you for coming, for being here …’
“No. Never. Never. You know, I told her, ‘Mom, if I didn’t have a job and a husband, maybe I could come out and just stay with you. But I can’t. I’m sorry. I cannot do it.’ I told her that a million times. And she just never could accept it.
I was struck by how much Helen’s mom reminded me of my own mom and her inability to acknowledge my love for her, what I did for her, and to let me know she knew I loved her.
We All Invited Mom to Move In With Us
That really struck me because it sounds like you all had some difficulty with her.
“We did. We did.”
I think it’s great that you still offered to have her come live with you. But she wanted you there.
“Yes. She didn’t want to leave her house. Also, her health insurance was an issue, because she had Kaiser health insurance; so she couldn’t live in any of the towns we kids lived in because Continue reading
Part 1 of this excerpt from Chapter 5 in my book, Final Years Stories of Parent Care, Loss and Lives Changed can be read at this link on my blog:
Mom Wasn’t Upset When I Left for College
What did you find most difficult about your mom, as a child growing up and as an adult?
“Boy. They’re two separate entities, really, in my mind. Growing up, I really didn’t feel like I had a bad mom. I was not acutely aware of it.
I remember the day I left for college, my mom just said, ‘goodbye.’ I was the last kid to leave, and I remember being slightly struck at the time that she didn’t seem upset that I was leaving.
I got a ride from a friend who I went to high school with. He picked me up and we drove out to New Mexico together to go to college. Just the fact that she didn’t go with me, and she wasn’t upset … Again, I was not that aware of it at the time. I think I was just sort of glad to leave. It’s looking back now as a mother and knowing how it ripped my heart out when my kids left for college—it’s a big piece of you. It hurts me that she wasn’t upset when I left.”
I certainly understand that. And I’m going to play devil’s advocate for a minute. That was also a generation who didn’t always express their feelings. For example, I know that my mom was upset when I left for college, and when I moved to Colorado. But I also know that she tried to keep it together for me. To challenge you a little, is there any possibility that your mom was trying to act like it was fine, and when you left, she bawled her eyes out?
“I have no idea and unfortunately, I can’t ask her now. Yes, it’s possible. That’s comforting to think that maybe she was upset, so that was kind of you to bring that up.
I really don’t remember anything being difficult when I was a child. I think our relationship became more difficult when I got married, which was when I was 30—things might have started to change then. They were better when I was in my 20’s than they were later in our relationship. I don’t know why that is. I think things going on in her life made her personally more miserable, and a piece of it way down deep inside was probably that she was jealous of me, because even though I was newly married, her marriage had fallen apart, and she really had nothing. She had no career to keep her occupied. She never went to college, and she always regretted it. She was very bright, and could have gone later, but she didn’t. I think that both my sister and I really were the objects of a lot of jealousy on her part because we had careers, which she never had.”
She envied that?
“I think she was envious of my sister and me for having fulfilling careers; and that our children weren’t our whole lives, like we were in her life.
My dad said she just became a miserable human being after the kids left, and that’s when they split up. He said he couldn’t stand it anymore. He said she was very happy when the kids were home and growing up, and she had a role; they were happy then, but that all fell apart when we left.”
So you were her identity.
“ Yes, she was very proud of her children and it gave her a reason to be, he said.”
That has to be tough to feel her jealousy.
“Yeah, it wasn’t outward—it was veiled. But, clearly, clearly now, I can see it,
Especially now that you have your own kids to compare to when you look back?
It sounded like your folks, when you were younger, got along fine.
“Oh, they did. My friends used to comment on how sweet it was that my dad, every day, when he came home from work, would take my mother in his arms and give her a hug and a kiss. Sometimes my friends would come over, and my mom would be sitting in my dad’s lap in the big armchair. Nobody else’s parents acted like that so they always remarked on it. About how sweet that was. So they were happy when we were growing up.
I was 22 years old and in my last year of college when my mom and dad divorced; Continue reading
For many adult children, saying good-bye to a parent in death does not leave them in peace and can in fact leave them dealing more with guilt than grief. I am sharing such a story here, an excerpt from Chapter 5 of my book, Final Years Stories of Parent Care, Loss and Lives Changed. This is my interview with Helen. Helen’s words are in quotes and mine are not. My thoughts are in italics.
Helen, a pediatric nurse practitioner, and I were in intermittent email contact during her mother’s final months before she succumbed to pancreatic cancer at age 87. She passed in December, 2011 after being ill for 18 months. Helen’s father is 91 years old and still living.
I received the following email from Helen in March, 2012.
Mom’s Final Act Hurts Those Left Behind
“My mom died on Dec. 27. It has been a difficult time, NOT because she died but because of what she did as her final act. She changed her will and did not tell anyone, not even my brother who is the executor, and left the bulk of her sizeable estate to charity. It is so hurtful and so unbelievable that she chose to leave this world in such an unloving and hateful way. My siblings and I are having a hard time grieving…
We scattered her ashes out at the beach (this weekend – early March) and said our goodbyes, but we are all having trouble working through the normal grief process because of what she did. It’s even worse than that; she asked my 25 year old daughter a year ago if she would agree to be the head of a charitable trust she was setting up for after her death—and didn’t tell her how much money would be in it nor that her act would be very hurtful to her own kids.
My daughter was blindsided and taken advantage of. She agreed to keep this a secret from us at my mom’s request. She now finds herself in a terrible position, and feels that we are mad at her, which we are not. We are mad at Mom for taking advantage of her this way. The charitable trust will have THREE MILLION dollars in it—quite a task for a now 26 year old who is busy in law school, to administer. She has to research charities (mom designated human rights and conservation), decide how to invest the money, and decide who to give it to and when.
I’m someone who isn’t grieving the way most would grieve for a lost parent…”
My heart went out to Helen. Her situation is a prime example of how a difficult relationship with a deceased loved one and unresolved emotions such as guilt, hurt, and anger can complicate and hinder the pure experience of grieving.
When we spoke during our first telephone interview, Helen’s pained voice unmistakably expressed a deep sense of feeling betrayed and deceived by a loved one. I could sense her still grappling with her shock from this bomb that had been dropped on their family from seemingly out of the blue.
“You have to understand that it isn’t about the money. We’re all doing okay as far as money. It’s that my mom would do this and be so secretive, and have her last act be something that would hurt us so much and be so hateful. I just don’t understand how she could carry this secret and this hate in her heart and take it into death. And the position she put my daughter in as trustee— it felt like it was to create a wedge between us (my daughter and me).”
Maybe the upside of our interview not recording is that you can talk about it again, and maybe that will help you process it more. (Due to technical issues with our first recorded interview, we followed up with this second interview.)
“I don’t know. It’s all fresh in my mind again because my mom’s house sold; it closed on March 8th so the money was just put into the charity account. My daughter, as you know, is in charge of it.”
How are you doing?
“I’m doing—I’m mostly fine. I occasionally have a moment. But I’m considering getting some counseling. I’m just so angry with my mother for not—not letting us work this out before she died. It would have been so much easier, you know?
Oh, I get it.
“And, I’m just furious with her. Anyway—I’m doing well for the most part.”
Dysfunctional or Not?
How many siblings do you have?
“I have three siblings, 2 brothers and 1 sister. I’m 58, the youngest of four.”
What were the interactions like in your family? Were your interactions communicative and honest, or more dysfunctional?
“Oh, boy. Okay. I think our family was functional. I don’t think we were dysfunctional. But I don’t think there was a whole lot of communication.”
That’s pretty dysfunctional.
“Well, dysfunctional? I mean, I think of dysfunctional as, like, wacko.”
I think it’s a catchall word for …
“Okay. Well, it depends on your definition of dysfunctional. But, Continue reading
In my book, Final Years Stories of Parent Care, Loss and Lives Changed I tell eleven stories, including my own, of those adult children caring for their aging, ailing, and dying parents. I was struck by how little we as a society talk about our feelings and experiences during this difficult time of losing our parents, or our grief process after they are gone. That is what motivated me to write Final Years. Although my cousin’s partial story below is not in my book, it shows the depth of struggle and loss of control with some of the decisions we and our parents must make … the ones we all go through as we come to grips with the process of watching our parents die, and with ourselves as new motherless and fatherless daughters and sons.
I received the following email from my cousin, Karen, on February 26, 2013 after her mother, my Aunt Helen, went on hospice care at home:
“Dawn, I am worried that mom can survive a long time without food, just drinking water. I know I can’t control it, but I don’t want that for her. I can’t conceive of withdrawing hydration, though. I keep thinking there must be a lesson in this. Then I think there isn’t, except to be here for her. A friend told me today it is a sacred time with Mom. It’s what we all hope we can do for our loved ones. I know that, but I just don’t want her to have to go on and on like this.”
Even though it may be a sacred time, watching our parent waste away or in pain is agonizing for many. It was for me.
I received this next email response from Karen on April 8, 2013 after I checked in to see how she was doing since her mother’s passing in March:
“This weekend was hard. On Friday it was one month since Mom died. I just miss her. I had no idea until I got home how much my days revolved around her, her schedule, how she felt, even though we were four hours apart. I called her—we talked at least three to four times every day. I structured my day around when she was home, when she was gone for an appointment. If I was going anywhere at a time we might usually talk, I let her know in advance. It’s really taken me by surprise, how often I want to tell her something, how often I want to talk to her. Tom and I went to her Princeton home the weekend before last. It was very hard driving there and going into the house, knowing Mom wasn’t there. It makes me sad to think about the house being gone at some point, though we have no reason to keep it.”
Hospice care, our days revolving around our loved parent, adapting to a life without them, going through their home and possessions and then finally selling their home. It’s all part of it. How did you do with it? Are you going through this anguish now with your own parent? Know that you are not alone.
“Mr. Robert Jackson died yesterday of complications from doing a lifetime of crap that he didn’t really want to do. His condition was further complicated because he also failed to do much of any of what he did want to do. Experts reported that he died from cramming someone else’s ideas of life into his body, his brain, and his life. Attempts by Mr. Jackson to fill the void with work, cars, excessive eating, alcohol, three wives and two thousand rounds of golf, and meeting everyone else’s expectancies but his own were dismally unsuccessful. Unfortunately, this all took so much out of Mr. Jackson that he was just flat worn out and died about 20 years too soon. Miserable in his last years, he passed un-peacefully in his home. He was surrounded by colleagues from the job he hated and family members who were all just as miserable as he was.”
Taken from a book by Phil McGraw (Dr. Phil). Obituary written about a fictitious person and shared by Reverend Roger Teel.
It’s never too late to be happy and be ourselves or to follow our own dreams!
Dr. Bill Thomas wants to abolish nursing homes, he told Ryan Warner in a Colorado Public Radio interview on May 23, 2014. Why? Dr. Bill Thomas, a nationally known geriatrician, envisions a Green House model, where several homes are clustered together with ten residents living in each home. Each individual resident has their own bedroom and bathroom, complete with their own front doors and doorbells. And, they may help out with the cooking, cleaning and gardening.
Thomas believes older people are much better off living in small group homes rather than in nursing homes. He doesn’t believe that aging baby boomers will tolerate the traditional big institution nursing home model. The feeling of a medical facility is not Continue reading