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Reply by Jimmie
13 Nov 2014, 10:43 AM

Dear Frustrated:

I've been awake far too long this morning, Ny wife has decided that the day should start at three thirty.  My body disagrees.

I read your post this morning and wodered how you were.  Your write about the "real hard time" you are in at the moment.  You also write that you are not sure if you could find the words to explain those difficulties.

I am wondering if you would try. It is important for me to hear about the difficulties you are facing now, and to hear how your head and heart are responding to those challenges.  This careing for another can be such an exhausting and lonely world to live in day after day after day.  It can leave you numb - mute with weariness.

If it is not an intrusion, and if you find a moment, it would be good to hear from you.  I would like to be of some help, to offer you some "company", to listen as best I can to a person I have come to care about. I know the others feel the same.

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Reply by frustrated
13 Nov 2014, 3:18 PM

Thank you Jim,
I am writing this with tears streaming down my face. Here is my story, I will try to give you the short version. My husband has cirhosis of the liver, never drank in his life, was caused by over wieght diabetic fatty liver that turned into cirhosis. He is also now in the last stages of kdiney desiese. I retired early 2 1/2 years ago to take care of him.

In the last six months he has been in the hospital 6 times. The last time ws the month of Oct. fro nearly the entire month. They sent himhome shen he was "stable". In other words they ddn't know what else to do with him.

He has gone through stages of mind confussion off and on when the toxcins build up. IN the last two weeks he has gone streadily down hill. HIs mind is confused. Nights are the worst. He tries to get up and go to the bathroom, even when he doesn't need to about every two hours. He can't find the bathroom and I use the urinal as much as possilbe.

Home Health is supossed to be calling me so I can get some help. I have to be with him 24/7. We do have children who come in and help as they can. He doesn't want to eat and when he does, I have to feed him. Needless to say I am exhausted.

Here is this once very intelligent man( was a history teacher) who can't even find the bathroom or figure out how to turn on the faucet.

We went to the Dr. yesterday and they basically said this was the way it will be and they will try to keep his kidney's stable. But to take homhome and try to best I can.

This morning I found him on the floor and called our son to help me get him back to bed. It took us over 1/2 hour to get him up. He doesn't cooperate.

So do I put home in a care center(centre) or do I have Hospice come in.HOw do you make those decisions? My heart, soul and body are breaking.

Thank you agian Jim for listening.
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Reply by JennJilks
13 Nov 2014, 3:28 PM

VJ, This is a difficult situation. If he is palliative, it will get worse. This is the awful truth.
And you are unable to lift him, you must look after yourself, too.
There are long waiting lists for many long-term care centres. There are many good hospices, as well.
If you are at the breaking point, act now.
This would be my unsolicited advice. I've seen a goodly number of caregivers ended up ill, themselves.
You need to put on the oxygen mask for you, if you are going to be able to advocate her him and keep your health.
Take care,
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Reply by Xenia
13 Nov 2014, 4:37 PM

Good Morning to All:

VJ I understand and support any of your decisions to put your husband into care or hospice.  Reality comes and as caregivers the hard decision must be made, do we keep on caring for husband/or other and get ill ourselves but go through the turmoil of placing a loved one in care.  It is always guilt or thinking I have not done enough caring for my loved one and so we carry on even though we are ill and weakened more each day.

It is interesting that this came up as I was going through much of the same dilema as you, yesterday and the day before, I noted that John, my husband, seemed very disoriented. Asked him what he wanted and he replied I don;t know, then asked for pills for his stomach, etc.  The few days befre he couldn;t remember what day it was and insisted on various other dates, etc. even though I reassured him.

Getting good care in an care centre bothers me also, there are so few and far between and often have to travel miles from where we live so I depend on palliative care and still am able to look after John.  We are fortunate to have children who come and visit and help me with daily chores etc.  We get care for bathing, etc. and I have learned to use 911 in case he falls or other.  

I share you despair and understand the feelings one has when you have to make difficult decisions so please keep in touch with our group as we all have or are going through much of what you are at this time.  We understand and although we are not profesisonals we experienced the anxiety, anger, sorrow and all the feelings that go on when caring for a loved one who has many different problems with their health.  

Take care

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Reply by Xenia
13 Nov 2014, 6:26 PM

Good Morning All:

Dear Old Bat:  Your cadence in writing is like a song or a march whatever mood you are in.  How great we can share, laugh and cry about all the things going on in our lives from day to day or should I say hour to hour.

To-day in B.C. it is a bright and sunny day but cold to our standards.  4C and that is cold here.  Yesterday and the day before was worse as we had high winds and even though I am no lightweight I felt like Mary Poppins at times.

John has been having bad days so I carry on.  Decided to go to my dr. yesterday, am in great health so I can carry on as I have my prescriptions filled for my chronic ailment.  Wish they had another name for it...chronic is so common.  lol.

Decided to do some dusting to-day as the sun is showing the dust.  I decided I would have liked to be a Quaker or someone related to Scandanivians.  Why, they had the right idea, straight boards for dressers and such.  No fancy do dads that are carved and the dust lands on these cutouts and into the corners and show that I am not a great furniture polisher.  Ikea has the right idea..no frew fraw.  Just straight and one just wipes down the fronts and don;t have to dig in corners.  But some one will say they have no character.  At my age, I don;t need character..I need ease. 

Waiting for the nurse to call and let me know she is coming to-day.  Have supper simmering on the stove.  John needs mostly soft food now so I cook sauces and such at great lengths then use the hand blender to mush up the hamburger or such to make it easier to swallow.  He needs his protien as he is diabetic as well as other problems.

Awaiting our son to come and deliver my meds I left in his car after going shopping yesterday.  Seems I forget something every time, is that wishful so he can come back again for a visit.

Off and running the sun is shining through the sliding doors and that ray of sunshine has all the dust dancing and floating around in it, have to close the venetians so I don't see them then I will put the dust cloth away and pretend I am finished.

Take care.

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Reply by oldbat
14 Nov 2014, 12:00 AM

Me again, with some good, grand, wonderful news:  Karl is WALKING!!!!!!  Something they said he would never do again.  Yes!  Yes!  Yes! Laughing  His fantastic private physio (paid for by me - out of my wine/whine budget!) told me today.  I cried.  And I'm so proud of him.  

Sprung today, and was given some great lists of care-givers groups here in the Toronto (the centre of the universe - doncha know!!!).  Hope to have time to go through the list and determine which groups might be useful for anyone living here, and also make notes on the sources, which hopefully will help some of you who don't have the incredible luck to live in cowtown - a.k.a. Ford Nation. This may take a little while as I've been given sundry and diverse appointments for myself and there are also several I have to take Karl to.

VJ I am so sad to read your news.  But please, please, please take care of yourself NOW.  That is your first duty towards your husband.  You've been taking wonderful care of him for 2-1/2 years, now you owe it to yourself, and him, to look after you.  And, if you're thinking hospice, I understand that they are miraculous places, filled with people who would be as concerned for you as they are for him.  

From what I've read, and seen on-line, they are places of hope, beauty and tranquility.  All the things that are in such short supply for you both right now.  All designed to make your time with him a a loving, peaceful period.  Please do consider this very seriously.

Xenia, You always make me feel so much better about myself.  And yet you soldier on with incredible courage and even more incredible stamina.  You're my hero.

And Jimmie, ah Jimmie, what a tough, tragic situation you're in.  And yet, you find time to console us all with truly rhapsodic words, and briny Maritimes humour.  You are a true treasure.

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Reply by Nouce
14 Nov 2014, 1:30 AM

Such good news, Oldbat!

Your cold weather got here today--in the form of bits of sleet. But made Pablo unhappy, because he couldn't do his round the block in the wheelchair. Hoping for this weekend to be outdoors-worthy, even if cold. The social worker comes for our next consult on Tuesday. I often wonder whether in her short visits, with Pablo's great social skills, she can see the steady cognitive losses I live with day by day.

I listen with such great humility and love; I too am wondering what it will take before Pablo needs to go into care. He says definitely not. I fear the broken hip that will force us in that direction. VJ, you are strong and brave, and it is the right time.

We all need sleep, wine, laughter and each other. I'm so grateful to you all.

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Reply by frustrated
14 Nov 2014, 2:24 PM

Thank you all for your encouragement. Yesterday I put Gary on a waiting list for long term care. I also talked tohis Dr. and he is putting in a pallative care referal. He was surprised that it wasn't done on one of his perviouls hopsital visits. 

I also contacted a nursing service about some coverage at night. My daughter came in for a couple of hours and I went out for a massage. I just wanted to stay there on her warm table and sleep, but unfortualtely that isn't included. She gave me some lavender oil of essance and I used it last night. 

We did have a better night. Will see what today brings.

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Reply by jorola
15 Nov 2014, 2:14 AM

Wanted to let you all know I am thinking of you all and the struggles you face.

Frustrated - I am glad you got a massage - aren't they the best? You have made a hard decision but I really think it is for the best for the both of you.

Xenia - I am sorry John is having more bad days. I know how hard that is for you. Try to rest when you can and ask for help when you need it.

Nouce - I am sorry the weather is preventing Pablo from getting out. I hope warmer weather finds you soon to lift and warm your hearts.

Oldbat - such amazing news about Karl. I hope you both get a well deserved break from hard times.

Dear sweet Jimmie - my heart goes out to you and your wife. You are such a deeply caring soul. You care your your love and you always take the time to try to help others here.

To all of you Adpotedson, natR, Jenn and our wonderful mods who are alway checking in to make sure eveyone is ok - have a warm and pleasant sleep and strength and peace to face a new day.

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Reply by oldbat
15 Nov 2014, 3:25 AM

More great news!  The man with whom Karl and I worked on the book and video about our journey through Karl's stroke, is going to Germany on business next week.  He wants to set up a Skype session from there with Karl and me this week to talk about how the stroke and Karl's ensuing spasticity have affected our lives.  He works for the company that suplies Karl's botox - FREE - and they are using this campaign we're creating to help their staff understand what happens when someone is hit by a stroke or some other form of brain damage.  I guess you could call Karl and me the poster children for the stroke community! Geriatric children!

Amir (our contact and friend) travels to Frankfurt, where Karl was born, several times a year.  He told me that he's going to try to get me included on one of his trips!  What a wonderful thought!  The only sad note is that it would be impossible for Karl to join us - so I haven't mentioned that possibility to him.  Now if the company would spring for a 24-hour care-giver for him - can you imagine!  Oh well, if it does happen, I'll have to learn how to use the camera on my cell phone.  And I am totally photo-phobic, not to mention inept.

I do hope I'm not being too "Pollyanna" for you all here.  We share so much heartbreak that I guess I wanted to use my news to say that good things can happen during this terrible time, too.  When the clouds are lowering in the sky it is really hard to imagine the sun peeking through.  But it can.  And will. For us all.

I am holding you in my thoughts and my heart.  Each and every one of you.  


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