Caring for Loved Ones

  1. You have chosen to ignore posts from jdrotten. Show jdrotten's posts

    Re: Caring for Loved Ones

    @YF: Thanks so much for sharing with me/us.  You sure are the awesome neighbor!!  I'm sorry for the loss of your father.

    My step-father is doing a great job of watching over my mom, so I'm lucky there.

    take care YF and see ya over at WA!  JD
  2. You have chosen to ignore posts from wizen. Show wizen's posts

    Re: Caring for Loved Ones

    I always have found it's best to focus on the emotion behind the words, than it is to focus on the facts of what the person is saying.  

    My grandmother as she started getting more confused, was convinced that my mother had stolen her car.  Thing is, Grandma never drove, and never owned a car.  The facts didn't matter, what mattered was she felt trapped and stuck.  So we talked about places we'd like to visit, places she had visited, etc.  Taking her outside, or for a ride would help too, when she was able.  

    One of the best things we did was to make a photo album of family faces and places she'd lived - she would peruse that thing for hours.  She didn't always know who the people in the book were, but she loved it nonetheless.  I got her a book on historical photos of the part of boston she grew up in.  she could identify places from her childhood, but she couldn 't tell you who I was.  Old memories lare more stable than more recent memories.   

    Touch is important.  I would massage her hands and feet - or give her a manicure - and we'd talk about anything - or nothing.  The contact - physical and social was enjoyable for her, regardless of the factual content.  My mom had a bad habit of arguing the facts with her.  ("No, that wasn't in Rhode Island, that happened in New York.")  To me, I didn't see the point in arguing facts that she wouldn't remember in 5 minutes, but the feeling of conflict would be the most memorable for her.  

    Reassurance, respond to the emotions.  Your reply about "all these people are here because they love you" was perfect.  Our names don't matter, but we're here for you. ♥  Tell me more about the astronauts.  Let them express their memories, in their own way.  Ask about ancient history - the older memories might come forth, and you might tap some old stories you've never heard.  Just remember that facts are suspect and listen with your heart.

  3. You have chosen to ignore posts from Hepdog. Show Hepdog's posts

    Re: Caring for Loved Ones

    "My grandfather said he was starting training tomorrow and they were going to show him how to jump over fences (he is an amputee). I told him I thought he'd be really good at that."

    Perfect. A happy conversation, and few minutes later he's forgotten the exchange but he's still happy. On the other hand, imagine being corrected constantly, being told "No, you're wrong" all day. It would get so depressing. It's so hard to lie, but that's what's best sometimes. Change subjects if you have trouble.

    Take care.
  4. You have chosen to ignore posts from redwolf68. Show redwolf68's posts

    Re: Caring for Loved Ones

    My paternal grandfather was the only one of my grandparents to suffer through dementia.  It was during the last 5 years of his life; he started really going downhill during the last 2 years.  I remember him turning to my dad and asking him "Are you my uncle?"  And there were the times he'd leave the house they'd lived in since 1948 (after returning home from Puerto Rico, where he'd been stationed for 2 years), insisting he was "going home."  The police in Oxford, Mississippi (where they lived; where my dad was born), would pick him up and call my grandmother, saying "We've got your husband, ma'am, we'll bring him home to you."  The scarier side of it was when my folks, who were visiting and had taken a trip to see some friends in Memphis, returned to the house later that night and found my grandfather up and patrolling the house with his revolver (a short-barrelled Smith & Wesson .38).  After that, my dad persuaded his father to let him take the gun home with him; my grandfather agreed, saying "Heck, I ain't usin' it for anything."

    My grandmother finally put him in a nursing home in the spring of '85, and I remember visiting him there once.  My dad just looked miserable through the whole visit; I really think it broke his heart to see his father have to be there.  Grandma's health was not so great at this point (she was in the early stages of emphysema).  My grandfather had bladder cancer, and that was what did for him 18 months later; I still remember the morning my mom came to my bedroom, woke me up to tell me he had died the night before and they were going to his funeral (I couldn't leave - I was in my senior year of high school, had 2 tests that week I couldn't afford to miss).  After that, over the next 8 years, I lost the other 3; my maternal grandmother in the spring of '89 (declining for over 10 years after a massive stroke), my maternal grandfather in August of '91 (pneumonia on top of early-stage lung cancer; this happened a week before my brother's wedding - a really difficult time for my mom), and my paternal grandmother in December of '94.  I still remember her death - I was working at FedEx's International facility in Memphis, Grandma was living with us as her emphysema got worse (she was on oxygen her last 2 years), and I worked nights; I went in to say goodbye to her, and I remember seeing tears in her eyes, which really shook me.  My father's parents weren't very expressive emotionally, so this was really something.  I had a feeling something was going to happen that night, and when I got home around 4:00 am Saturday and saw the police car out front, I knew I'd been right.  She passed away sometime after midnight.  Of them, hers was the only funeral I went to - a simple graveside service, which was all she wanted.
  5. You have chosen to ignore posts from cosmogirl. Show cosmogirl's posts

    Re: Caring for Loved Ones

    Just wanted to add my two cents and offer some big cyber-hugs to those of you who are dealing with this now.

    My mom had dementia and lived with my then-boyfriend/now-husband and me for the last two years of her life.  The prior two years were almost harder because of the worry, frequent check-ins, trying to explain to her over the phone how to change the TV channel with the remote, etc. etc.

    I was lucky that mom stayed relatively cheerful for the most part but became a raving, biting, hitting lunatic whenever she got a UTI - which is quite common for the elderly, especially women. 

    So, whenever an elderly person has a sudden mental issue - think UTI first!  Eventually, mom got put on a low-dose antibiotic as a preventive nature.

    My experience is that it's not helpful to correct your loved one when she's confused.  Just smile and agree.  If she starts to get agitated, grab a magazine or a glass of juice to try to divert her.  Sometimes, she'll just be upset.  Let her.  Think of her as if she's a frustrated child who doesn't have the words to express her emotions or can't understand what's going on around her.  I always think about how an advanced math class used to drive me to tears of frustration on a regular basis.  My mom's whole life became like that stupid class sometimes!

    As my mom's dementia got worse, she lost the ability to cough and swallow, so she ended up aspirating some food or drink and died from aspiration pneumonia. 

    In my mom's case, she was perfectly happy most of the time, so her disease was much worse on me than it was on her.  (When she went into a nursing home occasionally for a little post-hospital-discharge care, she often thought she was on a cruise ship.  It was quite hilarious!) 

    I encourage anyone reading this who is caring for a loved one, to check out your local elder services agencies...not just the Council on Aging in your town but the area's elder services - i.e. Springwell in the Watertown/Waltham/Newton area, and Minuteman Home Care in Lexington.  They were able to provide us with a lot of services - some free, some not - including a 1-week stay in a nursing home for respite care when we had to go out of state for my sister's funeral, as well as a folding wheelchair, home health aide referrals, and a support group for caregivers.

    I am glad mom is at peace, and so I am.  But I will never forget the living hell we went through and am glad to offer some support to anyone who needs or wants it - a phone conversation, a beer, some referrals, etc. 

    I treasure every day that my brain works.  Of course, lol, some days are better than others......
  6. You have chosen to ignore posts from Dread27. Show Dread27's posts

    Re: Caring for Loved Ones

    I take care of a lot of the day to day stuff for my Nan and I know how it is.  I just wanted to drop in and offer some support.  Its tough but I'd hope someone will do the same for me.
  7. You have chosen to ignore posts from ItDoesntMatterWhatIThink. Show ItDoesntMatterWhatIThink's posts

    Re: Caring for Loved Ones

    Just a quick note of appreciation and thanks to everyone.
    Took a little bit of a blow today regarding this, so it's a little tough for me to reply the way I'd like to right now.
    But seriously - your replies are all meaning the world to me right now, JD, GMV, Honey, Yogafriend, Wizen, Sexulate, Red, Hepdog, CosmoGirl and Dread.... :-)
    Thank you.
  8. This post has been removed.

  9. You have chosen to ignore posts from cosmogirl. Show cosmogirl's posts

    Re: Caring for Loved Ones

    JohnC, I couldn't agree more....

    Dementia is horrible for the caretakers and other loved ones, but not SO bad for the patient.

    Did your dad have ALS?  I lost a friend to it and, you are right, I never saw someone suffer more in body and in spirit. 

    I ALWAYS find something to laugh about every day.   And something to be grateful for.  Keeps me sane AND happy. 
  10. You have chosen to ignore posts from cosmogirl. Show cosmogirl's posts

    Re: Caring for Loved Ones

    By the way, IDMWIT, is your avatar today a Pnina Tornay gown from "Say Yes to the Dress"?  It's SO tasteful! 
  11. This post has been removed.

  12. You have chosen to ignore posts from Twinster. Show Twinster's posts

    Re: Caring for Loved Ones

    Oh, my loves.

    You've all but wrapped up my schooling, education and passion. Someone may or may not have mentioned my employer as well. My home life consists of my lunatic toddlers but my life's work is the elderly.

    You've all been/are such good caregivers. Everyone is correct. From UTI care to reassurance, you're doing it all correctly. Dimmy if you want to FB or email me what town your grandfather is in, I can give you all the resources at local, state, and federal levels to make sure he is receiving the maximum amount of services and benefits in the event that he does return to the community.

    And hugs to all of you. Really big hugs. (You too, Dread! Miss you, stranger!)
  13. You have chosen to ignore posts from redwolf68. Show redwolf68's posts

    Re: Caring for Loved Ones

    In Response to Re: Caring for Loved Ones:
    I feel for all of you that are dealing with this.  It's interesting for me to read because my father suffered an opposite fate - his body slowly got paralyzed but his mind was fine throughout.  It was so painful to see him realize that he could no longer drive, then walk, then eat, then breathe.  He knew what was slowly happening to him and that seemed, to me, to be the worst possible way to go.  Of course, reading these stories, it becomes clear that is always difficult.  We took care of him at home throughout - he'd go in the hospital for bouts of pneumonia and stuff, but always wanted to be home.  At the end, we had hospice come in to make sure he was comfortable.   You do all you can, but no matter what, you wish you could do more.  Then, when they pass, you feel guilty about the sense of relief you feel.  Relieved to know they are no longer in pain.  Relieved to know you no longer have to worry if you are doing the right thing.  Relieved - but still angry that it had to happen at all.  Until you find a way to make your own peace with the situation. This is exactly why we need to laugh at stupid things on a daily basis.  It's survival.
    Posted by JohnCocktosten

    Exactly right about the relieved part, JoCo.  My grandfather did have periods of lucidity, when he wondered why he couldn't remember anything or why he was the way he was.  My grandmother, during the emphysema, had this heavy, laboured breathing that was so hard to listen to; during the last 2 years of her life, she said a number of times that she felt like a burden on us (she'd checked herself into a nursing home for a while, but they weren't taking good care of her, which was when my folks decided she should move in with us).  So, the night she died, I do remember that I cried a bit, but it was more relief than sadness - I was relieved that she was no longer in pain.

    I also knew that, of her 2 grandsons (my dad was an only child), I was her favourite, while my brother was my grandfather's favourite.  I often wonder what she'd have made of my wife.
  14. You have chosen to ignore posts from wizen. Show wizen's posts

    Re: Caring for Loved Ones

    another suggestion - when you're not sure what to say, or if you need help finding a topic or when no topic seems really appropriate -

    - reading out loud is a very enjoyable way to spend a visit.  Especially if it's a favorite book, a favorite author, a favorite subject, a relevant timeline, etc.

    - bring a portable CD player and listen to favorite music (theirs, not yours :P )
    it doesn't have to be familiar - think gospel, church music, folk songs, kids songs, blues, jazz, regional or ethnic music.  I'd like a little zydeco myself. 

    - flip through a magazine together - pets, fashion, cars - you'd be surprised the stories that an evocative picture can bring forward.  Sometimes the adverts do this better than the articles!

    Being present and in the moment with them is the most important part. 
  15. You have chosen to ignore posts from ItDoesntMatterWhatIThink. Show ItDoesntMatterWhatIThink's posts

    Re: Caring for Loved Ones

    JoCo, thanks for posting - this one's tough - because I can see him realizing he's losing it. He's lost most of his mobility already. He was gangrenous last year and the choice was amputation or death. He never regained the strength to walk with a prosthetic. Similar to your father, my grandfather just wants to go home. How did you handle that when you couldn't take him home? Was he able to accept he needed to be in a facility? Did hospice provide services for him at home or in the hospital? I'm sorry your father went through that. I'm sorry you had to watch him suffer.

    I'm sure I'll always wish there was more I could do, that's a great point. But right now, all I wish is that I could bring him home and have him watch his damn Glenn Beck.
  16. You have chosen to ignore posts from ItDoesntMatterWhatIThink. Show ItDoesntMatterWhatIThink's posts

    Re: Caring for Loved Ones

    The MRI showed nothing...

    So right now, don't know what to do.
    He's got pneumonia, he's losing weight rapidly and they just moved him from the rehab back to the hospital.

    He doesn't want to stay at the hospital or rehab. He's begging me to take him home. Even telling me just to round up some petty cash so he can hire someone to take him home. He won't listen to the doctor, because he's not really a doctor. He's a ten year old who has convinced everyone that he's a doctor.

    My family's asked me not to visit him because he won't talk to anyone else, he thinks I'm the only one who will "help him". And by help him he means go home.

    It's easier for me to just stay away, I guess- but is it easier for him?

    I feel I'm doing something terrible in staying away.
  17. You have chosen to ignore posts from 2ada63d622e89774a9fdcbc90527ab8e. Show 2ada63d622e89774a9fdcbc90527ab8e's posts

    Re: Caring for Loved Ones

    Wow, Dimmy, that's hard. I'm not sure why your family thinks you should stay away. If it's easier for you, though, I think that's your answer.
    My Dad had a brain cancer and he was like your grandfather. He always wanted to go home, even though it would have been completely impossible. He just didn't realize it. It was heartbreaking to experience.
    The only helpful thing I can think of would be to talk to whatever relative has been coordinating with the doctors and make sure he's not constantly agitated. If he is he might be settled down with some minor meds, but that person would be the one to bring it up with the docs. If he's only agitated when you are there, then I guess you probably should take a back seat. If he calls the police the hospital staff will handle it.
    BTW there are patient advocates and social workers in most hospitals and they can be very helpful.
    As far as the doc's being 8, I thought they were all at least 12. What do I know?
    Hope this helps.
  18. You have chosen to ignore posts from TwoCentDonation. Show TwoCentDonation's posts

    Re: Caring for Loved Ones

    In Response to Re: Caring for Loved Ones:
    As far as the doc's being 8, I thought they were all at least 12.
    Posted by Green-Mountain-Views

    Well, if he's American, or went to med school here he'd have to have a bachelor's degree, plus the medical degree, so that's 8 years of schooling there, plus the residency... So, yeah, he'd have to be at least 12 ;)

    Maybe you could think that out loud, and then add, "But if he's only 10, then he must Doogie Howser smart." ;)

    Ok, maybe not...

    Anyway, Dimmy, just remember that you need to take care of yourself as well as your grandfather.  So if you need a break, take it.  Everyone has their limits, and sometimes one of the best things to do is to respect those limits.  It prevents us from overpromising, overextending, and failing others in our lives.

    OK, taking a break from this thread... It's reminding me of my grandparents and making me worried and sad about how my parents will age.  But, I did find what I read here very useful for future reference.

    And, man, do I wish my mother got my great-grandmother's longevity and health genes.  Great-grandma represents  the one healthy and long-lived branch of the family.  The others died ill from the usual ailments.