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Reply by Jimmie
24 Nov 2014, 9:56 PM

It's only five in the evening here, but it feels like midnight.  Seems like it's been dark all day. Early mornings and long days of being more or less housebound.

Sarah is snuggled up in bed watching a John Denver concert her spastic movements somewhat subdued with the approach of sleep.  She has always been shy to sing, but every now and then when I am in the kitchen I hear her quietly singing a line or two much to my secret pleasure.  In an hour or two she will be sleeping, and my time will be my own.  Sounds indulgent, but I look forward to that time of the day when the house is quiet and I have myself to myself.  I often think of all of you at such times and wonder how you are doing.

My dad died relatively young and Mom being a good Irish Catholic from the old school never contemplated remarrying.  She spent the last twenty years of her life alone in her city flat thinking her thoughts while we went on with our lives often too busy to ask what those thoughts might be.  Each evening when she went to bed, a row of pillows replacing dad's presence, Mom would take her container of holy water and sprinkle it about her darkened bedroom in the directions of the country where her five children were living.  When we were cleaning out her flat following her death, we noticed that the hardwood floor on three sides of her bed was bleached white from this nightly ritual.  The landlord was not impressed and gruffly asked for an explanation.  None was given.  In any event, he wouldn't have understood had we tried to explain.  For us, her children, the stains were a testament to her lifetime of love for the lot of us - and her efforts, though perhaps considered foolish by some, to keep us safe wherever we might be.

I have no holy water to cast in your directions;  nevertheless, I want/ need to assure all of you of my affection and concern for your "safety".  IT sometimes feels to me as if we all  find ourselves on a dark and stormy sea. Every now and then a wave precariously lifts your craft above the horizon and I catch a momentary glimpse of you before you disappear again in to the depths of a roiling trough.  Had I my mom's faith, at such times, I would try and bless your crafts in some fashion and wish you safe passage.  Lacking that, the best I can do is wish you all well and keep the candle in my own curragh lit so that, at the very least, you might catch sight of it from time to time and know that you are not alone.  I hope that is of some comfort to you; I know that your presence on these troubled waters is of constant comfort  to me.

Jim

Take care everyone.

Jim       
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Reply by Nouce
24 Nov 2014, 10:14 PM

Dear Jimmie and all of you,
     Thank you for the sea metaphors. They keep coming. Strong words for a girl who grew up in the high desert! I am thankful for you all and hold you in the starlight on my early morning walk. Jimmie, it's like your time when Sarah is sleeping. I make sure Pablo has safely gotten up and used the portable, then back to sleep. Then I go out and look at Orion setting and the Big Dipper swirling and give thanks for you all and hold you for the day ahead.
     American Thanksgiving is week which gives me lots of worries because family aren't always the most sensitive. But I hope it will cheer up P.

Best to all,
Nouce

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Reply by frustrated
25 Nov 2014, 10:47 AM

Here it is the middle of the night and I can't sleep. The last three weeks have been ver hard. Gary has become increasingly confused. All the toxins in his brain. He has been very  restless and anxiouls especially at night. So I have been up every couple of hours all night to get hime back in bed as he gets up and wanders.

He has fallen a couple of times but has been able with my help to get up and back to bed. I have had a private nurse come in a couple of nights so I can get a few hours of sleep. But that hasn't worked out to well. Home Health evaluated him this last summer and at that point we didn't need any assistants. Since he got out of the hospital the end of October I have been trying to get him re-evaluated. The ealiest they can do that is Dec. 22. I called and talked to his case manager and explained that I couldn't make it until then. Her  reply was that if it got to much for me to take him to ER.

Sunday night, I thought i had him settled and sleeping. He got up and I heard him fall. He had fallen and almost pulled a large older TV down as he was using it to try and get up. It didn't fall as I got there in time. But it made me realize that I can no longer keep him safe. 

How do I survive putting him in a Care center? Logically I know it is time for that, but it is breaking my heart to come to terms with the reality. I feel like I have failed him and failed myself. I am a caregiver and have been a caregiver for most of my life for family. I know I can be as invovled as I want when he is in a care center. But it isn't the same. 

Also, I am a tranplanted American and I have always over the years hosted at least some of my extened family for Thanksgiving. I cancelled it this year. Our children have always enjoyed that they have had two Thanksgivings. But not this year, it will be the first year I won't have a Thanksgiving dinner. I know that seems trite with all that is going on, but it has always been a tradition. 

Sorry I am feeling so sorry for myself, and have rambled on. I know that all of you have so much to deal with also, and reading your postings have helped a lot.

Thank you for being there.
vj  
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Reply by Jimmie
25 Nov 2014, 12:46 PM

Dear Frustrated:

You sound exhausted and heartbroken.  And no wonder.  You are dealing with a very difficult situation and decision.  The options you have,  keeping Gary at home or placing him in a facility, are both difficult ones.  It seems like no matter what you choose to do there will be significant problems for the both of you, significant suffering and concerns including perhaps a sense of betraying Gary, of failing him should you choose to place him in a facility rather than keep him home with you where you feel he will receive better care.  Added to all this is your lack of sleep and the fact that the normal time for sleep has now become a time of increased anxiety and vigilance for you rather than rest. Your mind and body are never off duty - day or night - always on high alert.  I suspect that even when you do rest it is not long enough or deep enough to be of much help.  And when you wake from a fretful sleep, it is to face yet another day of physically and emotionally exhausting care giving - a care giving which is depleting what little reserves of energy you might still have.  Sounds like you are on the edge of burning out which would be yet another heart breaking circumstance for you to bear given your concerns for Gary's well being.

I was exasperated to hear your case worker's response to your call for help.  I find it hard to believe that a reassesment could not be conducted at an earlier date given Gary's significant deterioration, the toll it is taking on you, and the fact that you said you simply could not wait that long.  Unfortunately, the suggestion she did give to you - the trip to the ER - has in fact been the only option some of my friends have had left to them.  Some of them, at the point of exhaustion, have taken their loved ones to the ER and in some cases have had them admitted.  At least the admission gave them some sense of security and an opportunity - temporary though it might be - to rest and recover themselves. In this province we also have facilities which provide temporary respite beds.  I suspect you have the same in your area.  These beds can be booked for periods of time long enough for you to have a break and yet still be able to care for Gary.  The fact that such periods in a facility are temporary might remove some of the sense of failure you mentioned you would feel from a permanent placement.  Should you consider a temporary placement, see if you can book it at a facility close to you if possible so visiting Gary would be reasonably convenient.

I am also wondering if you have access to a counsellor, social worker, palliative care nurse/team who could provide some support for you as you move through these difficult days.  If you don't, perhaps your case worker or family doctor might be able to recommend some one to you.  My head just goes in chaotic merry-go-round circles when I find myself in circumstances similar to yours.  The support of an experienced (and compassionate!) counsellor and/or social worker can be of considerable benefit.  I have found their companionship alone is of comfort to me let alone their professional knowledge, skills, and advocacy.

AS for family and rituals,  they too often fall by the wayside in the face of your exhaustion and become yet one more disappointment/ loss in your life.  I have pretty much let go of everything.  I just don't have the motivation or energy.  However, some of my friends and family members have stepped in and salvaged some of the rituals which used to be part of our family calendar.  I wonder if that might be possible for you.  Family and friends often want to hep and sometimes don't know how.  Some of my family - sisters - bring Christmas to our house for example knowing I have lost interest in doing so myself.  WE appreciate the food and the company, and I appreciate being relieved of the responsibility of having to host a celebration in keeping with the way we used to when my wife wasn't ill.  Sometimes, it is so good to have someone else carry YOU  for a while.  Such times are gratifying for my family and friends too as we are together, and they know they are doing something which is of genuine help.  Might not be possible for you in your circumstances, but maybe it is.  It might be worth a try.

I'll leave it at that for the moment, dear.  I am not immune to the issues that plague you.  I vacillate daily on whether or not I should have Sarah placed in a nursing home of some sort.  On my bad days, the decision seems easy; on the good days - much less so.  I wish I could win the lottery and then keep Sarah home with all the luxuries of care money can buy.  I wish there were better nursing homes, and better home care available.  In this province there are long waiting lists for both.  I wish our government would stop talking out of both sides of its mouth when it comes to health care for people in our circumstaces.  My wish list goes on and on some days....  The best I can do is to offer you my long-distance support  and affection.  These are difficult, dificult times for the both of you.  Please keep writing.  Better to be in the company of friends, than be alone.

JIm
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Reply by oldbat
25 Nov 2014, 5:36 PM

Dear Frustrated,

Here's a tender thought wrapped up in a little tough love:  take that next step.  Seeing Gary into a long-term care home would NOT mean that you have failed as a care-giver. Quite the contrary.  It would mean that you could both live a little more comfortably:  he would get the extended care he so badly needs and you would be able to concentrate on BEING with him, as opposed to worrying about falls-in-the-night and all the other horrors you have been so bravely facing.  You can't be truly THERE for him when you are totally exhausted and filled constantly with fear of the "what ifs".

How do I know this?  Experience.  My husband, Karl, has been in LTC for 2-1/2 years.  We had no choice in the matter.  After a catastrophic stroke, he was totally paralyzed down one side and very aphasic.  I was told I was too handicapped to care for him myself - and there was no-one to help.  The day we were told this was truly the worst day of our life.  But now we both actually have a life.  To be honest, he has more of one than I do.  He comes home for several hours two days a week, takes himself (by Wheel trans) to and from the Aphasia Institute twice a week and we chat by 'phone several times a day.  Since being in the home he has regained a lot of his speech and, through physio, is actually starting to walk again - something we were told he would never do.  Of course, we were also told he'd never speak again - so he's made liars of all those "specialists"!   He reads up to 20 books a month, delivered by the local library, watches every socccer game he can find on T.V., along with a buddy he's made there, goes on most of the outings they offer and is generally content with his lot.

Yes, we would both LOVE him to be living at home.  My loneliness is sometimes overwhelming.  But we have learned to enjoy the small pleasures that life offers us both these days, and carve out a path that works for the most part.

Please understand, VT, I am not  trying to sugar-coat the pill here.  I know, only too well, the sorrow, despair and confusion that you are facing now.  Things can get better for you and Gary, but your decision - and it is one that only you can make - may well be the hardest one of your life.  

Whatever you decide, please know that all your friends and fellow-travellers here are rooting for you.  We share your pain and confusion.  Lean on us.  Keep coming back here.  Let us offer sympathy, empathy and even, sometimes, a little hard-won advice.


oldbat
 
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Reply by frustrated
27 Nov 2014, 12:27 AM

Dear oldbat and Jim,

Thank you so much for your kind words and advice. Yesterday the care center were I had him on a waiting list called and said they had a room available. It is very close to where we live and is small and family like. I guess that was the door opening that I needed to push my self through.

After two sleepless night worrying about it. I have made the decision to place him there. As we are a blended (what a miss use of a word) I was concerned about his sons thinikng I was "dumping" their dad. I have kept them involved with his illness and had them stay with him when I need to get groceries,etc. So they are very familiar with his present state of health. All the kids agreed it was time and told me not to feel guilty. But of course I feel guilty. I talked with Gary about it and he realizes that I can't take care of him at home anymore. He is discouraged. 

So he will probable be released Monday from the hospital. WE will then start a new chapter in our lives. 

vj 
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Reply by Nouce
27 Nov 2014, 12:48 AM

Dear VJ,
     My heart goes out to you! I understand so deeply what you describe. Just enrolling my partner in a day care caused me cry all the way home after taking him there for the first day. I hold you in my heart, and as another "blended" second wife, I also get the deep stress of contsant worrying about our partners' childrenand how they view what we do. I wish you peace, and a sense of rightness, as you and Gary make take this step.

Nouce
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Reply by oldbat
27 Nov 2014, 1:40 AM

Dear VJ,

I sometimes think that guilt is a prerequisite for what we do.  It is NOT a result.  Because you are a deeply caring and responsive person, it's inevitable that you will suffer those pangs, specially now.  However, without that capacity (to feel guilt), you would not have been so effecxtive in doing what you have done to this point.  So,in that sense, maybe it would help to regard guilt as a gift instead of a punishment.  I, of course, haven't reached that particular peak of Zen yet!  But it's not for lack of tryingFoot in Mouth

I really believe that, when these terrible days of transition are past, when Gary is comfortably ensconced in a place with people you both know you can rely on and trust, your primary feeling will be one of relief, for you both.  Gary because he will, to a great extent, get his wife back, and you because the burden of being the primary care-giver has been greatly lifted.   Now you can relax together and enjoy the quality time I'm sure you've both been missing and longing for.  

Speaking as yet another blended second wife, cherish your stepsons.  From where I stand, no longer with the two Ugly Sisters (Karls daughters!), you are very, very fortunate.  I'm sure you've worked hard to achieve and retain that "fortune", and you've succeeded.  I am so envious!

Be strong for the next stage, and enjoy the blessings that will surely ensue. 

oldbat 
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Reply by Jimmie
27 Nov 2014, 12:15 PM

Dear Frustrated:

I am encouraged and pleased to hear you latest news - that a "door has opened for you".  As you say, it is a door leading to a new chapter in your life and the life of your family.  There will no doubt be adjustments for all of you, but there is also the promise of a revival of energies particularly for you.

I am delighted to hear about the facility being "very close...small and family like".  That is wonderful news - comforting for all of you.  The other good news is the fact that  Gary's kids are so supportive of your decision.  That must be significantly consoling for you as well as being of practical import.  It is a relief to  hear that you are receiving  such support from the other indiciduals most affected by Gar's illness.  I'm sure you will find that support critical and reassuringl as you move through the various transitions which lie ahead.  You were very wise to keep Gary's kids involved over the last while.  AS you say, that provided them with an opportunity to clearly experience the complications associated with his illness.  Their uniform support for your decision was based on the experiences you encouraged.  Such family harmony is not always present when similar decisions need to be made.  It is a blessing when it is.

You will all need time to adjust to this change, Frustrated.  Be kind to yourself.  It can sometimes take the body and mind a while to recover from the kind of stress you have been living with.  The sun also rises.

Take care

Jim
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Reply by Xenia
30 Nov 2014, 7:41 PM

Hello to All on this page:

Been reading all the posts and wondering when I had to admit John has reached the early stage of dementia .  It has become more apparent and not just forgetfullness.

To-day he woke up asking for lunch when it was only 10:00 a.m. He had had a sleep after breakfast and lost time again.  He keeps asking why he can;t remember words.  Like wanting his razor to shave.  He still wants to keep tidy, asking if he should have his hair cut shorter as he can;t see any more.  We have Hair on Wheels lady come monthly do cut his hair.  

He asks repeadidly about the girls, when is Carole coming, maybe you should call her as it is too hard for you to watch over me.  We had his 86th birthday on the 20th of Nov. and he was quite good, tired and worn out at the end of the evening but wanting to see his 4 children, the inlaws, etc.

Dr. comes to the house and has upped his meds, so don't know if it is his Hydromorphone causing the dimentia, or what. he feels John's lung cancer is getting larger and is causing him more pain so with palliative care he wants to keep him free of pain or nearly free of pain and comfortable.  My mind is swirling as I wonder is it starting to be days of him not knowing what is going on. 

I am not afraid of his dying from cancer, his copd, his congestive heart failure and diabetes but I am afraid of dementia.  I saw him like this in the hospital but he rallied and is now showing more and more signs of not knowing what is happening and asking me to fill in his blanks.

Have to get off the computer, I hear him moving his walker and he is falling so off I go.

Take care.

Xenia 
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