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If so, would you mind sharing any insights on your own experience?
Thanks in advance.
Updated question August 13,2011
How do you manage to do it and keep sane?
To be honest, my greatest fear was that he was going to have a
heart attack and die while DW was away.
ill come back later. ;)
what kind of info are you looking for?
How not to worry and keep sane(no kidding)Quote:
Originally Posted by MrsSunshine
Ask Patty. She may not reply in the thread but may PM you instead. She has been pretty much taking care of her parents since she was a teenager and has been a caregiver for at least 15 years.Quote:
Originally Posted by Skippy
Not yet--but this will be me in the years to come. My in-laws are preparing to sell their house and the first criteria for the purchase of their new place: shortest driving distance to our house. Literally every time they look at a house to buy, they set the trip on the car and calculate the distance from the potential new place to ours.
Guess that means we've been chosen out of all the kids for the role of caregiver when they become unable to care for themselves independently. LOL. That's ok. I see caring for DH's parents in their senior years as a privilege and an honour. Of course, maybe I think that because they're still living 30km away and perhaps I'll think differently when they are 5km away. LOL.
o dear.. can't say that you won't worry or stay sane.. were dealing with this now..Dh is taking care of his parents .. driving them to appts. tending to their landscaping needs.. eventually were going to be looking at more issues. even though he's 1 of 4.. (1 out of province). you'd never know he had 3 other siblings.. most of the time anyway.. its very hard.. i'll admit. but i would rather dh take care of them. then them.. or anyone else. I'd pm Patty.. ;)
Been there, done that, Skippy.....my Mom lived with us for 12 years...most of those were absolutely lovely. Then Aricept wore off and she sped downhill very quickly. It started with her forgetting words, concepts, then on to hearing "those people" in the hallway when she went to bed...people who wanted to steal things...then accusing us of taking her things...omg, that was about the worst part. Then she couldn't function enough to put together a sandwich for herself (kept getting lost in the process), leaving the stove elements on...thank god for our security system that announced her attempt to leave the house at all hours...then of course the bodily functions can't be controlled so it's on to plastic sheet liners, Depends...It got to the point where I slept with one ear and one eye open. Although we had a wonderful careworker who came every day to shower her and visit with her while I had an hour to myself and on Thursdays, blessed Thursdays, my hubby and I got in the same car at the same time, and had 4 hours to ourselves! Imagine that.
Anyway...it got to the point where I couldn't leave the house at all. Oh, my dear, devoted hubby said he's 'clean her' if she soiled herself, change her Depends, etc, so that I could go out by myself for a while, I didn't feel it was fair to him and certainly not to her, as she likely could sense that he was caring for her most private moments and not me.
So a nursing home was in order. I called our Supervisor on a Monday, and she said there was an opening on that very Thursday. I cried the rest of the week...Friends came that morning to be with me as I was almost hysterical with the grief of that decision, and probably with stress and over-tiredness. I almost made the call cancelling, but my friends knew I couldn't function anymore the way things were, and we finally packed her up and drove her to the "hospital". She had a semi-private room, with her own bedding, pictures, etc, and thank God she was so far 'gone' she didn't realize she was moving out of her home for the past 12 years. But I did, and it was all I could do to hold it together.
She positively bloomed in her new surroundings! She people-watched to her heart's content, sang with the piano player...omg...it was so much more stimulating than our home, visiting with us, and watching her tv in her livingroom.
Then one day, several weeks into her stay, (I went nearly every day to help her with lunch and visit with her, take her for walks in her wheelchair and get ice-cream at the little cafe), we were walking to get ice-cream and she said, "I want to go home.'
OMG, my heart just broke, but I pulled myself together and said, "Mom...as soon as 'the doctor' says you can come home, you will!" We got ice-cream, and I wheeled her back to her room, all the while my heart was breaking, thinking of how much she missed our home...then we reached her room and she sighed and said, "Oh...it's so good to be home. I'd like to have my nap now." !!!!
Skippy....it's a battle of emotions. You're up one day, down the next. They say the sky is pink, you just nod and say, yes, isn't it lovely? I don't know what stage you're relative is in, but it is a progression...you can almost have a road-map of where this is all going.
You know you can always PM me and we can chat...I'll give you all the help you need...I wish I had someone to ask all the questions I had...some not-so-nice (like: how will this finally end for her? When...? How long do we have? How will I know when it's really getting bad?)...I'm here for you, as I'm sure Patty is...Having gone through this, it's a responsibility I feel, for me to help anyone who is facing this now.
Blessings, Lynn
Its tough, even with a caregiver coming. I could write a book about our ordeals! My family looked after my grandmother while she lived on her own with caregivers coming a few times a week.
My grandmother hated them coming because she didnt like the invasion of privacy. I lived 5 miles from her, and my parents lived about 10 miles, so she was always calling to complain and what not. Living with us was not an option..anyway, as she got older, things that were not important, really, became extremely important to her, so we really learned to tolerate alot. One example was the caregiver couldnt make her a proper cup of tea, and the lady didnt know what a tea cozy was, which grandma liked to use. (caregiver thought she was supposed to put it on like a hat when she served tea hahaha) I once made her toast and made the huge mistake of not puting the peanut butter ALL the way to the edges. Little things like that upset her as she got older, but we just let go in one ear and out the other.
We checked on her everyday, did her bills, laundry, dinner, pills, and whatever else. As she got older I think she got mad that she couldnt be self sufficient like she used to be, and took it out on us, especially my mom who bent over backwards for her. Mom had to double check pills, because caregiver was always mixing them up. Caregiver was also screwing up the phone. They had to call in when they left, switching the phone over to anolog to do so (why I dont know), so that it disabled grandmas lifeline and apartment intercom, and would never switch it back. She did have one caregiver that was awesome and was a huge relief when we knew she was coming.
One thing, you have to recognize when its taking a toll on you, my parents didnt, and were getting sick from being run down and worried all the time. I also did everything I could to help them help granmda.
Being with you is the best care in the world in my opinion though even if it is for moral support or a caring ear that will listen to the complaints. I think now, everyone should save up to pay for homecare, because at 102yrs old we finally convinced her to go into a home last summer. She was there for one week, then passed away. The home she was in, in my opinion was horrendous and the worst thing for her. My parents still feel guilt over that.
Not saying every retirement home is bad, because there are some awesome people that do their best, but this one was not right for her. Sorry for the rambling and getting off topic a bit, but it still makes me angry, frustrated, and dissapointed with the care she got in the home. In fact when we went to pick up her personal belongings, the home told my dad that she was moved to the second floor and was sleeping. The records didnt even show that she died!!!
Just dont forget to have lots of patience and take time for yourself!
what i know is , it takes a lot of love, patience , presence, time and to low down your speed at slow .....Dad was dead on dec 23 and i don't regret any minutes i was with him in the last 2-3 years of his life and cherish every good moments (yes there were ) i shared with him....
Wow I have to come back cause I don't know where to start.
Thanks everyone thus far.
Today hasn't been a good day, despite the meds.that were changed for me.
It was all I could do to keep from crying :(
My greatest fear is him dying while I'm at home alone.
I am so fed up with death.
http://t1.gstatic.com/images?q=tbn:A...l8oNK8Zo2fGKXghttp://t2.gstatic.com/images?q=tbn:A...5jvKMDnJfnDviUQuote:
Originally Posted by Skippy
Skippy, you're always so kind in offering your support to us here - I'd like to help but I'll have to get back to you- my doggie just climbed over the computer to sit on me - he's missing his "brother" whom he can't seem to find. (Our other dog left us on Thursday night when he took a tragic misadventure in front of a car.) I'll be back later.
hey skippy - my mom who is 89 has lived with us for 3 years now- when she was on her own she had 2 heart attacks - i was running from my job to her apt - i literally was running myself into the ground. then she had a brain tumour inbetween the heart attacks and she came thru that - god love her, for one year she lived with my brother and his family that didnt work out - anyway it is hard and sometimes easy- i feel sometimes i dont have a lot of me time - but i get over it - i thank my hubby for taking her in cause we have no kids at home since last year - no privacy for us - sometimes . but you know what i think she enjoys it here . She has homecare come in 3 times aweek to shower her and make her bed - that helps . I only work part-time 26 to 20 hours a week- i need that time and love working- even though i have a permanent injury myself. anyway thanks for listening - you will feel great in the end - erveryone tells me that - plus the 3 boys in my family are hardley there for her - so it is only me and me alone- so hang in there
I have no advice to provide... as I have never had the good fortune of being treated as the daughter. Hence I will never get to experience taking care of my mum (dad passed away 40 years ago). I will however say.. you are not alone, many go through this and thus the sandwich generation we become. I wish you the best, you are such a kind person.. so never forget that. God is good and He will be there with you always. You know you are never really, truly all alone He watches over everyone of us. And when our time comes He is there to take care of those of us who move forward and those of us who are left behind to grieve. Take care Skippy and trust in the Lord always.
:angel:
Before I comment about my situation I would like to say something about caregivers in general and I mean no offence to those who do not make the best caregivers, men. Before you jump out at me I mean no disrespect but the men I know cannot be caregivers the way women can. We are so completely different in the way we deal with problems.
Men(in general) always want to try and "fix" the problem. This is what they do. That's how they cope and unfortunately many of the problems faced by the elderly cannot be fixed. They can only be made comfortable and they must exist with the fact that death is sometimes a slow cruel process that you cannot fix. I believe this is what drives men crazy. My dad cannot cope with what my mom is going through. He cannot bathe her after she has messed herself, clothe her, cut her nails and toenails, cut her hair wipe her nose, he does not cut up her food nor does he understand that her asking the same thing over and over is not her fault. That the medication she takes will not heal her brain it will just slow the process. Things I hear everyday, "what's wrong with you I told you a million times", "how many times have we gone over this?", goddammit what are you doing, you'll burn, hurt, cut etc yourself." "Jezus you do this every time". It does not matter that I have told HIM a milion times that she does not understand anything and yelling will not solve the problem. So not only do I have to be my mothers caregiver(can you imagine how humiliated and sad she would be if she knew I was the one changing her diapers now?) but I have to run interference between her and my dad and my DH(who has difficulty understanding why he is like this) and my dad. You ask how I do not go crazy? LOL Maybe I am already there but I have several coping mechanisms that keep me going. All of my friends ask me this too, all the time, how do you do it? They cannot quite figure it out.
Do you see a pattern? No matter ho many years we have been dealing with this he does not know how to cope because he cannot fix it.
Skippy I say to you do not try to "cope". Tell your dear wife that you just do not know what service you can be to her in this hard time if that's the way you feel. If getting out of the house or staying out of the way will best serve you and keep your sanity then do it if you have Dw's blessing. It has been about 12 years that my mom has been really bad and guees what? My dad still does not know the half of what I do to care for her and he will never know. There is no need.
On a personal level I do several things to cope. I think of my mom as a patient, even though I am not a nurse, this allows me to do things that if I let my emotions rule me I would not be able to help her. Obviously keeping in the stress catches up with me and the way I let it out is every once and a while I have a super big ugly cry and let it all out. I also try to have some distractions so that not all my time is focussed on my mom, so having a 5 year old is a great distraction. lol
I will be brutally honest now. I still do not know how I will cope with the resentment that has built up over the years. I gave up my career and pretty much all privacy by moving back here and living in the same house. I know that if I had not moved back they would both be dead because had I not been here to call 911 on several occassions this would be the case. So as you can see I am still working on it. Knowing myself I will probably never get over it and I am not a forgiving person.
I don't know if any of this will make any sense to you and I wish you peace in this hard time. I am always a PM away my friend if you need to vent. Maybe I will vent right back at you. lol
Thanks Patty for sharing so openly, much appreciated.
I guess I should've mentioned earlier that I am not the Caregiver. In fact the Doctor ordered me not to be, in DW presence. Sorry for the confusion!
I just feel overwhelmed by having him back, and afraid of him dying in my presence.
I admire people like you who are so devoted to their parent, but at the same time, I know it is not possible for everyone.
Geez Patty, that is so true. My grandma was my Dad's mom, but my Mom did most of the caregiving. Mom isnt a leader of sorts, but when it came to her, she told my dad exactly what to do. Mainly to drive, phone calls or appointments. Mom cleaned her up, and changed her, she also bled alot (whole other story) and dad still didnt know really what to do after years and years.
My dad is the "fix it" type too, but he really really tried, but didnt see the resentment building up in my mom. Sometimes mom would start in at me about how things were that my dad just didnt understand, but I know it was her way of venting, so it was OK, I just let her go off until she felt better. The hardest times were these last five years, and my parents are almost 80 yrs old themselves, but they never did anything they wanted to do when they retired because of the care my grandmother needed.
Its alot for one or even 2 people to deal with, but you have to know when enough is enough and take the time you need for yourself. Resentment can really build, and its hard to fix, but luckily mom has dads support and weve had hours of conversations to get through this as a family.
I wish both you and skippy and families the best and the strength to cope, and of course PM if you ever need to vent.
Hi Skippy,
I wanted to offer you my own perspective...years ago, I went back to school to be a long term care aide and a licensed practical nurse...my own grandmother lived at home with us for 5 years before having a massive stroke and passing away...now, 15 years later, here I am today, back working in a long term care home for seniors who can no longer look after themselves, and I am loving every minute of it...I know it is not the same as caring for someone at home, but I care and love these seniors enough to care for them as I did for my own grandmother...it is very sad, as every one of them except two have dementia, and like Alzheimers, parts of the brain are 'shut off' so they are very confused at times and want to go home..other times, they want to be with members of their families that have long passed away...those are the moments that hurt me the most, because I know that those people have passed on, and all they can do is long for those they have lost and can't remember they are gone...
my seniors all have various stages of need...from full care (bathing, feeding,giving medications, incontinence, etc...) to fully functioning except for the dementia...
But most of the days I spend at work caring and loving for these seniors are happy and wonderful days...it is a very family like setting, there are 12 residents and each has their own private room with all their own things..we even have 2 seniors who have a dog...there is huge yard with walking trails, gardens everywhere, and a duck pond...there are visiting deer daily by the diningroom window, and there is 2 benches overlooking the ocean to sit at...we all sit together at mealtimes, staff included, just like a real family...we talk about old times and things they remember the most, even if we have heard it all a hundred times before...we have old movies every day...and music twice a week with singalongs...there are 4 care aids there and the owner of the home,&
we give them all hugs and kisses daily, and I make sure I pay attention to each one...some have no family nearby, and some have family come for lunch or dinner every day..our seniors care lodge is very open to having family come to visit 24/7, with no need to make any appointments to visit...just come whenever, the front door is never locked...
We also have respite, where seniors come once or twice a week and spend the whole day from 7 am-7pm, so that their families can have a break...and they are just as loved as the rest of the residents..
We care very much about the residents there, and we treat each one with dignity..if someone doesn't want to have her "parts" al exposed when we dress and clean them in their own bathrooms/bedrooms, we give them a towel to cover up so they can keep their dignity...we always treat them the way we would treat our own family...in a kind and respectful and loving way...
They get up whenever they want between 6:30-10 am, and come down to eat breakfast of their own choice, we always cook any breakfast they want...anything..
they get lunch at 12, a formal tea time at 3pm, and supper at 5:30, and always dessert after meals...and tea, coffee, and other beverages and snacks are always available...we even have a nice formal dinner nightly with real flowers and lit candles on the table with a fire in the diningroom fireplace every night...
I am not trying to tell you to put your family member in a facility...I am just telling you that there are many ways for you to get help to ease your worries, including respite or even getting a loving care aid to come in to your home once or a few times a week to help your family out...
If you need any advice or help, I have alot of experience dealing with aging seniors, and you can pm me if you want..
What you and your DW are doing by caring for him at home is a vary admireable thing, and you deserve alot of praise for that...I know how hard it is...
Last and foremost, always take care of yourselves first, because if you don't do that, you will not be able to care for those you love to the best of your abilities...
((hugs))
Uh oh. I'm about to stick up in defense of men as caregivers.
(please don't hurt me) :shrug:
My dad cared for my mom through her Pick's disease. For those of you not familiar, Pick's is like Alzheimer's, but it affects a different part of the brain. Regardless of the name, it is a lesser known form of dementia for which there is little research and, unlike Alzheimer's, no drugs to slow down the progression.
Mom's disease progressed rapidly. Literally, it took 2 years between the first clue that something was wrong and when we buried her. It began with forgetting things and getting lost/wandering, then complete loss of language ability (she became mute except for the occasional throat noise or laugh), followed by inability to eat without choking, then incontinence etc. There were a couple of times she almost choked to death at home and I really have no idea if she always knew who I was when I showed up. She couldn't talk anymore, so it was anyone's guess.
My dad cared for her with all the love in the world; was endlessly patient and forgiving and respectful. I'm sure this was very difficult for him to do--my mom had been fiercely independent all her life and it killed him to have to restrict her. There was also a lot of unfinished business between them in terms of their marriage. Their marriage had never been an easy one. But still, he plodded forward with patience unlike anyone I've ever seen.
More than that, he was from the era where the woman traditionally did all the household stuff--so in addition to caring for my mom and making sure she didn't wander off somewhere or touch the stove, or steal food from his plate and choke on it, he now had to learn how to cook, do laundry, clean the house, go grocery shopping in addition to managing all the other things he had been responsible for as "the man" in the house. It was absolutely exhausting for him physically and emotionally despite having in-home care person several times a week plus me coming in too.
He wanted to care for her right up until the end because he felt it was his duty--but it became way too much to handle. It broke his heart to put her in a home, but I know darned well most people would've put her in the home loooooong before he finally decided it was time. She lived in the nursing home for 3 months and then, she was gone.
My dad is my hero. :)
Caring for elderly parents is a helluva tough job--and I'm not even if a position where I've had one live with me yet. I just know how hard it was to care for mom and I was doing it from a distance even, so I'm not even the same ballpark as anyone else here.
Makes me think of that wonderful story though- Robert Munsch's "Love you forever." You are the people picking their mommas up and rocking them back and forth at the end of the story. It's truly beautiful and takes a very special sort of person- male or female-- to do that.
Ninna I know there are many men caregivers also I was really just pointing out some major differences in how they tackle the issue.
It can also depend how old they are. Some men from certain eras were brought up that way. Thye never had to lift a finger for anyone but themselves. My dad is 86 and he is of that generation. Spoiled all his life and then faced with this diliemma.
my dad has alzheimer's, and fortunatley, has a gf,
who watches almost every step he takes.
i do remember when dad had another gf, who
had alzheimer's and left the condo where they were
in the middle of the night - and he didn't get up -
can't imagine why he told me. she was okay - but still?
he phoned me the other night 2:30 am, worried about
money,,,got me worried as the present gf has
power of attorney.
so sorry, anyone has a relative or friend with this disease,
is mind boggling/ and so hard on the heart
- as one tries to figure out 'what they meant'
and so much more, sighing
Is there a thread in the Health section about caregivrs? Maybe we should set one up so everyone dealing with this can share their thoughts perhaps on a daily basis if they wish to. Any thoughts? Or we can use this one if Skippy doesn't mind?
Before I posted I searched for caregivers and there was nothing.Quote:
Originally Posted by Patty Smyth
I debated about posting in Health, but I believe this section is read
more often.
Hey Patty, you might be interested to know that DH and I (we're from generation X if that matters) were talking about this thread this morning on the way to breakfast out and he completely agrees with you re: that men try to "fix" the problem and can't accept it when there is no "fix" for it.
Quote:
Originally Posted by Patty Smyth
Hi folks! After reading all your stories, I feel guilty about how overwhelmed I get at times dealing with mother, brother and mother-in-law who are much higher functioning and not living with us. We (dh and I) moved back to my hometown to be close to our relatives and stop spending so much time in transit when it seemed there was a crisis happening.
I'm going to talk about a fear that Skippy has mentioned that, it seems, people haven't addressed. That fear is of being alone in the house should his father pass away. I know you are a faith-based person, Skippy, as you offer prayers so many times for us. In my faith we say that ,"You are not alone." We believe that God is always there to help you - think of the Footsteps in the Sand poem - and perhaps that will help you here. But practically, in our physical world here on earth - are you afraid that you will have to do something that you can't physically achieve - are you uncomfortable with witnessing the actual passing?
I will tell you that 12 years ago this month, my dear father succombed to lung cancer and passed away at home. He had been home only 24 hours from the hospital when he left us. I can remember almost every minute of that day and feel that it gave me the strength to carry on to deal with the details of the following weeks, as well as the emotional strain that it was. Although all my family was home, for 2 hours before he passed, I was "on call" at his side - everyone had been up most of the night and my mum and brother were finally sleeping as my other brother ran out to the store for a little while. I put on some very soothing music as I wanted his last time to be comforting - I held and stroked his hand - and had the time to talk to him tell him how much I and we all loved him. It was something that I never would have thought that I would have been able to bear. But he was so ill and so tortured in trying to breath that I wanted to help him to feel that it was ok to let go. Fortunately we were all able to be there with him for his last little while. As I saw that things were coming to an end, I asked him to hold on for a little while as my brother wasn't home yet. I'm sure he heard, as he finally passed a few minutes after my brother and his wife arrived.
It wasn't frightening. We called the hospice nurse who came over to start the process of his leaving us and then others took over with the details of taking him to the funeral home.
If you feel you can't face the actual death, don't feel badly - you can wait until there is someone there to help you with the details - there's no real "rules" about the timing.
I hope that I have been of some help. I'm sorry if the details are disturbing to anyone.
Take care and best of my thoughts.
Skippy...there's a wonderful section on the "Gardenweb" site here:Quote:
Originally Posted by Skippy
http://ths.gardenweb.com/forums/care/
It's one of the kindest sites out there, and where I met my new and very dear Friend in BC....There's a ton of information there and always an shoulder to lean on....I hope it helps....
Quote:
Originally Posted by ninna
I'm glad he didn't take offence but we truly do handle things differently. It's certainly not a flaw on their part.
Although not picking up socks is. :P
I'll try to remember that when I pick up Kiera's socks all over the place. :biggrin:Quote:
Originally Posted by Patty Smyth