RSS Feed Print
Posted: Saturday, July 2, 2016 12:21 AM
Joined: 7/6/2014
Posts: 1351

Sometimes I have to wonder how the human body has the "UMPH" to survive.  We have gone beyond  1 year  with HOME Hospice.  I have to be honest and say, I did not expect my LO to last this long, and I doubt that Hospice did either. A year ago, last June. it did not look promising.  

On some days, I see/sense a faint glimmer of the man that was a part of my life for 50 years.It is like a small and quick window opening  and closing ;  I see that glimmer in his face and eyes --- the essence of the person he was, one that I knew.  On MOST days he is the patient that I have become a nurse for, and I take care of his basic needs on a daily basis.  It is so much easier to distance ourselves from the reality of the husband/wife relationship, when we become a caregiver. 

 I don't know if it is EASIER OR HARDER.   It is just my way of coping with the reality of what my life is at present. 


Posted: Saturday, July 2, 2016 3:20 AM
Joined: 10/31/2013
Posts: 1768

I see you.......I have changed from wife to caregiver...I hate it, because Ron is still quite "with it"   Except he is now wiping his knife with his handkerchief ..Ahhhh.   We have to do what we can to cope.  

Blessings.  Sandra

Posted: Saturday, July 2, 2016 3:37 AM
Joined: 12/6/2014
Posts: 299

In the beginning it's just the little things that seem "off".  Then those little things gradually get bigger.  We know what the ultimate will be, but there's that time - sometimes short and sometimes seeming unending, when life is so unpredictable.  The essence of who they are just dwindles away and it becomes harder to think of them as a spouse and partner.  There's nothing left of the wonderful man I married.  He even looks different, partly because there is no expression left on his face.  I still love him so very much, but it's not the same kind of love.

I sometimes think that his actual death will be easier to bear because he has already left me, just not physically.  There is a reason why they call it "the long goodbye". 


Posted: Saturday, July 2, 2016 4:14 AM
Joined: 5/9/2016
Posts: 355

We start hospice for Brenda tomorrow.  I agree that things have changed, that I feel somewhat numb most of the time. 

Most of the time she is in a world of her own, not far enough away that I can't ask her a question and pop her out of her dream, but too far away to have a conversation.  Then that window opens and she's really here. 

They say playing slot machines hooks people because they pay off just enough to give them hope.  I don't have hope, but I'm always looking forward to that next open window.

Posted: Saturday, July 2, 2016 7:02 AM
Joined: 2/2/2014
Posts: 5538

Dahlke wrote:
  It is so much easier to distance ourselves from the reality of the husband/wife relationship, when we become a caregiver. 

 I don't know if it is EASIER OR HARDER.   It is just my way of coping with the reality of what my life is at present. 


It's interesting. I'm a 24/7 caregiver but I maintain a kind of fiction that DW and I are still real marital partners, even though I ultimately have to make all the decisions.  I go over finances with her, mostly to assure her that we can afford what we want to do (e.g. house renovation).   She does remember the names of direct family members but is a little weak on my siblings.

Sex is fun and friendly if a little different......  Hmmm what to say...."that's a pretty nightgown but don't you want to take off your shoes and socks?

 You get by. 

 Yes she is fading but she can be as adorable as ever.  As far as she is concerned I am still her bear, scaring or crunching the bad guys and serving up salmon.




Posted: Saturday, July 2, 2016 7:27 AM
Joined: 10/4/2015
Posts: 440

We have been on hospice for 2 months, they told me it would be a 3 month trial because he could still walk.... in the last 2 weeks down hill....still knows he has to go to the bathroom, but usually to late.... on Haldol for agitation....up every hour at night hollering.... I thought ok, this will stay like this for a while.....then 4 days ago....not eating , only 1/2 glass of water....a pudding cup....slept all day and night....I thought ok, now we are at the end....then yesterday he wanted mac and cheese...although it took a while to find out what he wanted....then he ate 5 CHICKEN NUGGETS???? then gets up and paces!!! he thinks I run a hotel...has no clue who I am.... when they say things change day to day .....not kidding.....lastly keep myself busy...I started cleaning things out in the home we are renting...knowing I will have to move when he is gone.... he had an old orange raincoat and pants from 2o yrs ago when he was 240lbs...(now 146) I thought its all torn...I will throw it out...that was day before yesterday....this was a day he never really left the bedroom. Last night on the news they were talking about hurricanes....he asks me "miss I had an orange raincoat , do you know where it is?"...the hairs on my neck stood up...!!! I dug it out of the garbage and put it back in the garage.....geeze.....


Posted: Saturday, July 2, 2016 7:47 AM
Joined: 12/17/2014
Posts: 1113

How right you are. It is surprising how hardy most human bodies are, and how stubbornly they hang onto life on Earth. It's phenomenal. (And it's equally astonishing to me how courageous humans are, considering what they face, to keep showing up every day.)

Maybe when push comes to shove it's an instinct that takes over, the drive to fight to stay here as long as possible. A portion of ourselves remains, somehow and no matter what in most cases, adamantly committed to this life. When a person's body is given time to leave the earth, it seems to take its time letting go.

Sending gratitude for your effort and wishing you strength to endure the grueling, lengthy race set before you.

Sea Field
Posted: Saturday, July 2, 2016 9:45 AM
Joined: 8/5/2012
Posts: 1869

Cynthia,    apparently your DH has an extra dose of UMPH.

gentle hugs to you, the other Cynthia  

Posted: Saturday, July 2, 2016 11:38 PM
Joined: 3/9/2012
Posts: 579

Irisized, I can totally relate.  My husband is a hoarder. We are keeping a lot of "stuff" just because it is too upsetting to him to get rid of anything.
Posted: Sunday, July 3, 2016 7:48 AM
Joined: 10/4/2015
Posts: 440

Bevy, it just freaked me out that he would bring it up.....when I literally just threw it out....freaky, freaky..... I know we are at the end....but I think the rest of the stuff can wait.....


hugs, kathy

Posted: Sunday, July 3, 2016 3:54 PM
Joined: 12/20/2015
Posts: 25

I find myself treating my husband as though he is one of my patients. I am a retired nurse. This approach to him just automatically happened. I try to ignore the fact that he is the love of my life and he is slipping down the rabbit hole. If I look down the hole I know I will not be able to go there. If I look at him too long I just want to cry. So, I just put on my nurse face and mind set and take good care of him. I hate AD.