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Coyote_Bandit

(6,783 posts)
Sun Feb 10, 2013, 04:48 PM Feb 2013

DU, I miss being here

I should probably begin by saying that my two siblings have predeceased me and that I am an only surviving child - and I have neither a spouse or children. Since June of last year I have been the primary and sole caregiver for both my parents and have filled that role without the ability to take much of any time for myself. Filling this role was something that came about suddenly and unexpectedly when my mother was diagnosed with lymphoma. I had taken a couple of trips with Mom and Dad about a month before she developed symptoms. The first and only symptoms she had were those of advanced systemic disease. Her lymphoma was described as being both aggressive and persistent.

Mom went through chemo treatments and obtained full remission. But shortly thereafter she began to display some neurological symptoms and we learned the disease had spread into her cerebral spinal fluid and brain. Mercifully, she was gone within a month after having an ommaya port put into her brain, doing intrathecal chemo and whole brain radiation. While she experienced some personality changes she did in fact remain remarkably lucid and active until her very last days.

Now I am left to care for my father who has lost the love of his life and become a pitiful little man. He does not eat or sleep well. His slacks are about 6 inches smaller around the waist than they were a year ago. Some days I think my elderly 11 year old renal failure dog eats more than my father. Dad refuses to see his doctor or participate in any kind of grief counseling or support groups. He comes from a medical background and insists that he will not take any kind of medication or anti-depressants during this time. More than once he has stated that he just doesn't find any reason to continue living and wishes that he too would get cancer and die. He's a little hard of hearing, has trouble focusing his attention, is forgetful and has some dementia issues. Even though he mostly lives somewhere off in his own little world, he insists that he is fully capable of living alone and refuses to consider any other alternative including part-time assistance in his own home. He is considered impaired but not legally incompetent therefore my ability to take action to protect him from himself are very limited. At least that is the advice I have received from several sources that work with the elderly in this area. He is quite vulnerable now and could easily be exploited and victimized even though I have taken what measures I can to prevent such a thing from happening to him.

For now my pathetic little life remains in indefinite limbo. I have a home and friends and a wide variety of interests and activities that I enjoy in another state. Or at least I used to. While I do make every effort to spend as much time as possible in my own home, the time away has encouraged me to think that I would like to invest more in the pursuit of some of those activities and interests and less in others. And perhaps pursue some new interests. Maybe even relocate. Not that any of that will happen in the foreseeable future. But I can dream and I can use my imagination to go all kinds of places. It is one of my few pleasures these days. And when this phase of my life passes I will reward myself with some travel.

I say all that to say that I miss being here at DU. I miss having access to so much information posted here. I miss the discussion and interactions here. I miss the attitude and the compassion and care that progressives have for others. I don't see that in the media or in the red state area where I am currently spending most of my time. I do stop by and read as much as I can but find my limitations such that participating in discussion here is very limited.

Just wanted to say that I have missed being here at DU.

73 replies = new reply since forum marked as read
Highlight: NoneDon't highlight anything 5 newestHighlight 5 most recent replies
DU, I miss being here (Original Post) Coyote_Bandit Feb 2013 OP
My dear CB, thank you for being a good child. CurtEastPoint Feb 2013 #1
You're right Coyote_Bandit Feb 2013 #7
Welcome back. In_The_Wind Feb 2013 #2
Thanks! Coyote_Bandit Feb 2013 #8
.......... Angry Dragon Feb 2013 #3
. Coyote_Bandit Feb 2013 #10
ah CB annabanana Feb 2013 #4
Thanks! Coyote_Bandit Feb 2013 #13
. littlemissmartypants Feb 2013 #5
Oh, yes Coyote_Bandit Feb 2013 #14
that's nice, but I'd probably set my hair on fire. RILib Feb 2013 #49
DU has kept me sane, staying home to take care of Gram Viva_La_Revolution Feb 2013 #6
. Coyote_Bandit Feb 2013 #16
! graywarrior Feb 2013 #9
. Coyote_Bandit Feb 2013 #17
It sounds as if things have been tough and stressful. You are always welcome here Flaxbee Feb 2013 #11
Thanks Coyote_Bandit Feb 2013 #18
. libodem Feb 2013 #12
. Coyote_Bandit Feb 2013 #20
Been there and done that. texanwitch Feb 2013 #15
There is a senior center within a reasonable distance Coyote_Bandit Feb 2013 #25
See if the Senior Center doesn't provide free taxi ride. texanwitch Feb 2013 #32
I will check into that Coyote_Bandit Feb 2013 #38
Coyote_Bandit... My own Dad, similarity, did not want to consider stopping driving... nenagh Feb 2013 #33
Daughter and that call has been made to his eye doctor Coyote_Bandit Feb 2013 #42
Good luck of course...oh I forgot to tell you that for years.. nenagh Feb 2013 #45
i know somebody who did that here Coyote_Bandit Feb 2013 #46
van RILib Feb 2013 #50
Good Idea Coyote_Bandit Feb 2013 #56
take good care of yourself. treat yourself to the little things. Tuesday Afternoon Feb 2013 #19
. Coyote_Bandit Feb 2013 #26
And we miss seeing you, my dear Coyote_Bandit... CaliforniaPeggy Feb 2013 #21
. Coyote_Bandit Feb 2013 #27
We've missed you too. I'm so sorry that you are going through such a sad time. Cleita Feb 2013 #22
My youngest sibling Coyote_Bandit Feb 2013 #28
(((((((Coyote_Bandit))))))) WillyT Feb 2013 #23
Thank you Coyote_Bandit Feb 2013 #29
We've missed you too. Curmudgeoness Feb 2013 #24
Thank you Coyote_Bandit Feb 2013 #30
DU kept me sane all the years I had to take care of my mother lunatica Feb 2013 #31
My folks took care of their folks Coyote_Bandit Feb 2013 #39
just this BlancheSplanchnik Feb 2013 #34
Thank you Coyote_Bandit Feb 2013 #40
Good to see you. 840high Feb 2013 #35
I hope Coyote_Bandit Feb 2013 #41
Taking care of an ill parent that has lost the will to live is a huge stress. Try to take care of Mnemosyne Feb 2013 #36
. Coyote_Bandit Feb 2013 #43
If you are usually the one taking care of others, it can be so hard to learn to take care of you. Mnemosyne Feb 2013 #48
. Coyote_Bandit Feb 2013 #57
Here whenever you need another... Mnemosyne Feb 2013 #61
. Coyote_Bandit Feb 2013 #66
Because ... Mnemosyne Feb 2013 #73
Please come back to C and B too! Phentex Feb 2013 #37
C&B Coyote_Bandit Feb 2013 #44
Hugs to you! Sissyk Feb 2013 #47
Thank you! Coyote_Bandit Feb 2013 #58
Hello, Coyote_Bandit! MrMickeysMom Feb 2013 #51
I'm looking for travel suggestions :) Coyote_Bandit Feb 2013 #59
Grand Canyon... MrMickeysMom Feb 2013 #70
YOUR LIFE IS NOT PATHETIC! Skittles Feb 2013 #52
Thank you, Skittles Coyote_Bandit Feb 2013 #60
Hope your trip with your Dad to the Eye specialist... nenagh Feb 2013 #53
Well, yes, we did go see that eye doctor Coyote_Bandit Feb 2013 #62
Wow, that's really amazing...close one eye when driving... nenagh Feb 2013 #69
Coyote equals 'little brother' in the eyes of the Great Spirit RedCloud Feb 2013 #54
. Coyote_Bandit Feb 2013 #63
any grandkids in the area that could help you out? orleans Feb 2013 #55
There are grandkids in the area Coyote_Bandit Feb 2013 #65
If you can get some of the "Ensure" products into your dad, those provide some caloric/nutrient MADem Feb 2013 #64
I can't get him to drink a milkshake or a smoothie or Carnation Instant Breakfast Coyote_Bandit Feb 2013 #67
They make something called Ensure Clear that he might be able to stomach. MADem Feb 2013 #68
passionflower RILib Feb 2013 #71
Ah, a testimony! Good stuff, isn't it? MADem Feb 2013 #72

CurtEastPoint

(18,650 posts)
1. My dear CB, thank you for being a good child.
Sun Feb 10, 2013, 04:51 PM
Feb 2013

I wish we all would remember that behind that screen name, behind the post, behind the comment, there is a real, live, human being, and we have no idea what that person has going on. Best wishes to you, my friend.

Coyote_Bandit

(6,783 posts)
7. You're right
Sun Feb 10, 2013, 06:32 PM
Feb 2013

We all get busy. It's easy to respond in haste to a post without fully knowing or understanding its context. I am reminded of the old saying that pain depends on point of view.

Thank you for the good wishes.

Viva_La_Revolution

(28,791 posts)
6. DU has kept me sane, staying home to take care of Gram
Sun Feb 10, 2013, 05:47 PM
Feb 2013

Even if you just stop by and read the headlines, it's a bit of a break from RL.

Gram is in her last days/hours right now. DU is keeping me sane and connected.

Coyote_Bandit

(6,783 posts)
16. .
Sun Feb 10, 2013, 06:45 PM
Feb 2013

Sending warm thoughts to you and your Gram.

RL can be so painful and so stressful sometimes. And at other times, unspeakably beautiful


Flaxbee

(13,661 posts)
11. It sounds as if things have been tough and stressful. You are always welcome here
Sun Feb 10, 2013, 06:36 PM
Feb 2013

and it's nice to see you, Coyote_Bandit.

My best to you and your dad. Stop in when you can.

texanwitch

(18,705 posts)
15. Been there and done that.
Sun Feb 10, 2013, 06:41 PM
Feb 2013

All I can tell you is that is does get better at some point.

Try to find even a hour for yourself, that is important.

Is there a senior center nearby for you and your Dad.

I would say the senior center is almost for you, you need some time for yourself.

It is easy to get burnt out taking care of a parent.

You may have force your Dad to go, it would be good for him.

Bless you for what you are doing.

Coyote_Bandit

(6,783 posts)
25. There is a senior center within a reasonable distance
Sun Feb 10, 2013, 07:27 PM
Feb 2013

but we have not been there just yet. Getting there requires travelling through some fairly heavy traffic and there is nothing resembling meaningful public transportation here. Dad thinks he is perfectly capable of continuing to drive safely and does not want me to take him there. He really shouldn't be driving at all and especially not in heavy traffic. He has issues with (1) double vision, (2) limited mobility in his neck and shoulders which inhibit his ability to turn to see traffic, (3) some hearing impairment, (4) generally slow physical responses, and (5) some cognitive impairment. He has an upcoming appoointment with his eye doctor and I am hopeful that issue will be addressed at that time. I understand that a long-time family friend who is considerably older than dad has contacted the doctors office to express concern about his ability to drive. That said, he will be devastated by this additional loss of independence. For the most part he has been willing to let me assume driving responsibilities but I have also found myself having to hide car keys on several occassions.

Getting dad to go to a senior center is on my list of priorities because he is really very social and would do much better around other people his age. I am hopeful that once he re-engages with other seniors that he will consider some alternaqtive forms of senior housing.

On most days dad is in bed from about 9 pm to 9 am which gives me some time to myself here at the house. I try to make good use of that time. Mornings are usually devoted to trying to keep up with what is going on in the world and planning and scheduling various things. I spend time in the evenings with my dogs or watching tv or talking to friends on the phone.

I have a friend who travels to visit and stay with dad several days at a time which enables me to occassionally have a few days out of the house.

Thank you for your encouraging words.

texanwitch

(18,705 posts)
32. See if the Senior Center doesn't provide free taxi ride.
Sun Feb 10, 2013, 08:24 PM
Feb 2013

The Senior Center my parents went had a taxi pick them up and bring them back.

My Father couldn't drive anymore so the taxi ride was good for them.

Your Father needs to get out of the house and you need some space.

Coyote_Bandit

(6,783 posts)
38. I will check into that
Mon Feb 11, 2013, 09:48 PM
Feb 2013

But generally speaking taxi service here is inadequate for the demand.

Thanks for the suggestion.

nenagh

(1,925 posts)
33. Coyote_Bandit... My own Dad, similarity, did not want to consider stopping driving...
Sun Feb 10, 2013, 08:52 PM
Feb 2013

In Alberta, the situation may be very different..but I spoke to Dad's physician, when he was in hospital, about my concern re my Dad's continuing driving..he was in his 80's at the time..

The Dr. was surprised..'Your Dad told me he sold his car'.

'Well' I said, 'he bought another one'.

So the Dr said, no driving..until my Dad completed a driving test part of which tested reflexes etc on a computer simulation.
But the test avoided the Dr himself saying .'No driving ever'. The decision depended on non arbitrary test results.

I just wondered whether you could contact your Dad's Eye doctor before the appointment..so you could voice your worry about his driving...when your Dad is not there to hear..

It makes you feel like a complete skunk, unfortunately... It is such a delicate situation..

What a wonderful son you have been...






Coyote_Bandit

(6,783 posts)
42. Daughter and that call has been made to his eye doctor
Mon Feb 11, 2013, 10:35 PM
Feb 2013

I understand that one of dad's 92 year old friends who is a patient of the same eye doctor has made a similar call. His eye appointment is tomorrow. It's likely to be a difficult day and, yes, I feel responsible. I also feel responsible to protect him from hurting himself and those who share the road with him.

nenagh

(1,925 posts)
45. Good luck of course...oh I forgot to tell you that for years..
Mon Feb 11, 2013, 11:01 PM
Feb 2013

My Dad sailed through eye exams... He had memorized the chart! Perhaps it was that he had memorized the eye chart at the motor vehicle bureau ... because they would do an eye test before renewing his licence (Alberta)

for your Dad.



Coyote_Bandit

(6,783 posts)
46. i know somebody who did that here
Mon Feb 11, 2013, 11:19 PM
Feb 2013

Dad has enough dementia and cognitive issues that I don't think he could pull that off. I could be wrong about that however.

 

RILib

(862 posts)
50. van
Tue Feb 12, 2013, 12:00 AM
Feb 2013

Our senior center has a small van that they pick people up in. Also there are glasses that correct double vision - take a look at the ones Hillary is wearing. He needs an ophthalmologist for the special glasses.

Coyote_Bandit

(6,783 posts)
56. Good Idea
Wed Feb 13, 2013, 06:15 PM
Feb 2013

I will chgeck and see if there is a van available to pick him up.

The special glasses that correct double vision were discussed at his eye appointment. Unfortunately, they will not work for him. But they might be of some help if his double vision gets worse especially his central vision.

Thanks for the suggestion.

Tuesday Afternoon

(56,912 posts)
19. take good care of yourself. treat yourself to the little things.
Sun Feb 10, 2013, 06:47 PM
Feb 2013

cat naps. movies. books. glass of wine. savor the moments.

Coyote_Bandit

(6,783 posts)
26. .
Sun Feb 10, 2013, 07:32 PM
Feb 2013

Cat naps? Yes, definitely.

Movies? Yes, but limited mostly to broadcast movies and the occasional Redbox rental.

Books? Yes, definitely.

Glass of wine? Don't I wish. This is a dry county and dad is a teetotaler. But I do confess to keeping a small stash of alcohol in the closet for the occasional drink before bed.

Savor the moments? Yes, yes, yes. Priceless.

Cleita

(75,480 posts)
22. We've missed you too. I'm so sorry that you are going through such a sad time.
Sun Feb 10, 2013, 07:05 PM
Feb 2013

I understand what your dad is going through as I went through it myself when my DH died. It took me five years to pull out of it. During that time I went through various illnesses and thought maybe I would be joining him soon, but I got better. Time does heal. Keep some hope that he will finally find something that makes him enjoy life again. Try to get him to eat better if you can but actually grief has to play out in its own way and its own time. I'm sending you and your dad positive thoughts.

Coyote_Bandit

(6,783 posts)
28. My youngest sibling
Sun Feb 10, 2013, 07:42 PM
Feb 2013

died less than three years ago. He committed suicide while going through some domestic turmoil. I don't think either of my parents ever recovered from that. After he died they realized that he was likely bipolar and they faulted themselves for not pushing him to get the help he had in fact already refused. He and dad worked together for many years.

Mom's death is a grief compounding another grief. I do realize that it takes time to heal. My concern is that dad viewsw his losses as so significant and monumental that he simply doesn't want to re-engage in life and find a reason to live.

Thank you for your warm and positive thoughts.

Curmudgeoness

(18,219 posts)
24. We've missed you too.
Sun Feb 10, 2013, 07:26 PM
Feb 2013

I know that there are times in life when we don't have the time we would like to have for things we enjoy. You have been through a lot, and it sounds like you have more to come. It won't be easy, and you know that if you have to blow off steam, or need some loving, we are here.

Some times, there is nothing that we can do for people we love. You are doing what you can, but you cannot force your father to do anything. Don't beat yourself up over that.

And remember to take care of yourself too.....caregivers often forget this in the hectic schedules that they keep.

Coyote_Bandit

(6,783 posts)
30. Thank you
Sun Feb 10, 2013, 07:48 PM
Feb 2013

There are a lot of good caring compassionate people here at DU.

I'll be back. I'll try not to whine too much and I'll probably need some advice from time to time.

Coyote_Bandit

(6,783 posts)
39. My folks took care of their folks
Mon Feb 11, 2013, 10:14 PM
Feb 2013

I knew it was a tough job.

I think only the people who have done it really understand many of the challenges.

Mnemosyne

(21,363 posts)
36. Taking care of an ill parent that has lost the will to live is a huge stress. Try to take care of
Mon Feb 11, 2013, 10:44 AM
Feb 2013

you too!

Mnemosyne

(21,363 posts)
48. If you are usually the one taking care of others, it can be so hard to learn to take care of you.
Mon Feb 11, 2013, 11:32 PM
Feb 2013

Keep trying, it will get easier. Kinda'

Coyote_Bandit

(6,783 posts)
44. C&B
Mon Feb 11, 2013, 10:50 PM
Feb 2013

I've really missed and I think I lurked there every time I had the briefest opportunity to visit DU.

I especially miss C&B and owe you a great deal of gratitude. I got lots of good tips that helped me prepare foods for mom while she was going through chemo. And I had a mental file of ideas and inspiration that have made food prep fun.

I'm playing with schedules and such and hoping I really can be here and in C&B more often.

MrMickeysMom

(20,453 posts)
51. Hello, Coyote_Bandit!
Tue Feb 12, 2013, 12:11 AM
Feb 2013

You really described a part of your life I'll bet we could all relate to. Surely yours is the role to carry now, and later... we'll, later we'll probably all be waiting to hear of your travels.

Always best shared in a place like this, I look forward to future for you and me and all at DU!

Coyote_Bandit

(6,783 posts)
59. I'm looking for travel suggestions :)
Wed Feb 13, 2013, 06:19 PM
Feb 2013

and I'm looking forward to being able to spend more time here.

Thanks for your support - and for looking forward to that future.

MrMickeysMom

(20,453 posts)
70. Grand Canyon...
Wed Feb 13, 2013, 09:32 PM
Feb 2013

See it from the South Rim...

Inside Passage of Alaska (Glacier Bay)

Train through the Rocky Mt...

???

Coyote_Bandit

(6,783 posts)
62. Well, yes, we did go see that eye doctor
Wed Feb 13, 2013, 06:34 PM
Feb 2013

That double vision was discussed and documented. Again. Dad had double vision a year or so ago when he was in to see this same eye doctor. During the last year Dad consulted his family doctor. The cause of his vision problem seems to be neurological rather than optical - likely related to some pinched nerves in his neck and shoulders resulting from arthritis caused by an old injury. Neither doctor really wants him to drive - but neither seems particularly willing to intervene. At this most recent appointment his eye doctor told him he really didn't want him to drive - but he could drive short distances if he promised to close one eye or wear an eye patch to address the issue of double vision. He did point out that doing so would mean that Dad would have no depth perception. And he tried to tell Dad that his response time had slowed.

Thanks for thinking of us. Looks like I will be misplacing keys a while longer.

nenagh

(1,925 posts)
69. Wow, that's really amazing...close one eye when driving...
Wed Feb 13, 2013, 08:15 PM
Feb 2013

A nurse who was a neighbour did say to my Dad, years before he stopped driving..never to drive after dusk, and only during times of low traffic..

I remember a doctor saying when he visited the local Home for the Aged( how great you are to spare your Dad that..for awhile at least). No sooner would he enter the common room than an elder resident who was fairly scrambled, thinking wise, would yell out 'there's the man that took my Drivers Licence away...it was a bit unnerving for the physician.. And the gentleman never forgot..

I'm sorry your Dad has double vision...because that may make reading harder for him...

Though they do make books with big print. On an iPad one can enlarge text size and brightness...but one needs dexterity to open/close tabs...

Best of Luck...with your Dad...the missing keys sounds like a great idea... My neighbour has a little therapy dog...well that is what she calls 'Angel' who is little bundle of happiness..and loves to sit close to or on a person...she is very light/ weight wise..
And her personality seems to be constantly one of utter joy. She brightens everything around her...but a commitment..

Take care... your Dad. :

Coyote_Bandit

(6,783 posts)
63. .
Wed Feb 13, 2013, 06:41 PM
Feb 2013

It was my younger brother who committed suicide a few years ago. He was the young prince and his death devastated my parents. During the last few months I have often wondered whether they would have preferred him to be their caregiver rather than me. Given that context, your comment has special meaning to me. Thank you.

Coyote_Bandit

(6,783 posts)
65. There are grandkids in the area
Wed Feb 13, 2013, 06:52 PM
Feb 2013

but they are minors and not yet able to drive much less care for Dad.

That said, they have been coming at least twice a week and their mother has been trying to find excuses for Dad to have reason to help them with various things. We are hoping that an on going relationship with his grandkids will help him find a reason to want to live. Hasn't happened yet but it is not because those kids and their mother are not making an on-going sincere effort. The mother has her own parents to care for - as well as a teenage step-daughter with a newborn.

MADem

(135,425 posts)
64. If you can get some of the "Ensure" products into your dad, those provide some caloric/nutrient
Wed Feb 13, 2013, 06:49 PM
Feb 2013

support. If he's a tea drinker, see if you can get him to take some tea with passionflower as an ingredient -- that stuff is nature's "Fuckitall" pill. Definitely a mood improver.

I feel for you--I can't tell you how thrilled I have been over the last few years to learn that hospitals have good internet access these days--I have accessed the net (and DU) from a seat by a hospital bed more times than I can shake a stick at.

It's one of the downsides of aging...all your friends and relatives are getting older, too.

Coyote_Bandit

(6,783 posts)
67. I can't get him to drink a milkshake or a smoothie or Carnation Instant Breakfast
Wed Feb 13, 2013, 07:51 PM
Feb 2013

Mom refused all the Ensure products and various nutritional and dietary supplements as well. She would not ever take a multi-vitamin.

The tea? That could work. Dad's a tea drinker and he is adventourous enough to try out different kinds and flavors of tea. Adding that tea to my shopping list.

Thanks.

MADem

(135,425 posts)
68. They make something called Ensure Clear that he might be able to stomach.
Wed Feb 13, 2013, 08:13 PM
Feb 2013

I have no idea how it tastes, though, but it might be worth a try. It looks like it could substitute for breakfast juice or a beverage w/lunch or supper:

http://ensure.com/products/ensure-clear

I swear by passionflower on a lousy day--you can buy it in pill form in Brazil; I haven't seen it here done up that way... but if you're on a flight with a noxious seatmate and a screaming baby, take one or two of those and it's as good as "Calgon, Take Me Away!"

Hang in there--it ain't easy.

 

RILib

(862 posts)
71. passionflower
Thu Feb 14, 2013, 08:17 AM
Feb 2013

I have some that is the dried herb packed in gelcaps brand Eclectic Institute. I dump out 90% and take the remaining 10% (in the gelcap, loose it sticks to the throat etc.) and get an effect. YMMD.

MADem

(135,425 posts)
72. Ah, a testimony! Good stuff, isn't it?
Thu Feb 14, 2013, 10:31 AM
Feb 2013

I like the ability to deploy the stuff "situationally!"

Feeling a bit stressed, annoyed, irritated, bummed out, or on edge? Take one Fukitol and call me in the morning!

I like my relatives, but (like in most families) there are one or two who can thin my patience rather quickly. When I know I'll be seeing them, I medicate appropriately with the proper herb, and my mood is substantially improved!

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