Mixed Emotions

MVChappy

Its been a while since I posted...DW has been somewhat rapidly declining...We have had Hospice home care for about 6 weeks now...DW condition is basically stopped eating..1/4 of a bowl of cereal in the morning & a yogurt for supper..1-2 bottles of Ensure during the course of the day...all coached & hand fed by me...I can barely get her out of bed, into the companion wheelchair, I can barely hold her up to change & clean her as best I can. She spends the day silent looking at the TV not absorbing anything, & often falls asleep....This has been the routine for about a month now...The only time I get a reaction from her is, when I pick her up to get her out of bed, or put her in bed...she screams like I'm going to hurt her....My mental status is fragile to say the least, as with my patience. I am the only caregiver 24/7 for the past 5 years or so. Hospice counselors offer suggestions like hiring an hourly caregiver @ $25.-$40. an hour to give myself a break...Yup that will go far on our S/S income...and then what, I get 4-5 hours of freedom to do what? - Its like a light switch, turning my emotions on & off as in that free time, all the problems will disappear...as I'm fretting the meter running on the hired home health aid. I have read posts that caregivers are at the end of their rope, & said things that were selfish & cruel, I was appalled, but now I'm there & understand....I look at DW & wonder why God doesn't take her...I know she would not want to be in the state she's in...I certainly would not want it either...She's alive, & yet dead....I have gone through the stages of crying & despair which were very difficult times, I fought tirelessly to get her to eat this, get her to eat that...get something on TV that she liked so we could talk about it...The false hope of quality days...like recovering from a common cold...at the end it was a fantasy, there is no hope, only tricking your mind to give you the encouragement of the result you want.....Now I look at her and wonder how long she will suffer in peace before the day comes...That is the truth, there is no reward at the end of the rainbow....Just had to get this off my chest....

Crushed

I was sad because I had no shoes, till I met the man who had no feet.

I have said this before.  the  only way you get Medicaid help for in home services in most states is by demanding that they place her in a nursing home NOW.  As long as they think you are willing to die the Caretaker Death they will do NOTHING 

They will lie to you continuously. You need advice from an elder care lawyer.   
 

Cynbar

Chappy, I am so sorry. I hope that hospice is sending in the maximum help you are entitled to  from them ---- aides at least once a day and probably twice, a homemaker once or twice a week, a volunteer to sit with her so you can get out for a short time. Those services can be a big help to you and also cut down on the sense of isolation. There is also a 5 day respite benefit, although I understand you want your wife near you. Please take advantage of this before you start thinking about private help at $25/hr.

MVChappy

I can't complain about Hospice, they are funded by Medicare, not me.....Its palliative care, so there are no treatments...With regards to bathing, they do sponge baths in bed or on the toilet...a task I've been doing before they came into the picture...Their care & compassion does not translate into actions....Just last week I had a consolation with the Hospice Social Worker, & explained I was at the end of my rope....She did not once hint at taking advantage of the 5 day 'Respite' benefit...5 days of the patient in a facility, is a real break for the caregiver, not a couple hours out of the house wondering what's happening back home... I'm just not getting how this hiccup can take away stress, it would just add to it in my case....I truly appreciate the constructive suggestions...This is a long path down the road that no one chose...You just have to play the cards that are dealt to you......

Ed1937

You have some excellent feedback above. Cynbar is spot on, and Crushed is an attorney.

nancelot

With so many having lost jobs, homes related to COVID restrictions, you may be surprised in being able to find help for less.  I always assumed that I would have to pay upwards of $25/hr for help, but was able to find someone who had lost her job and was very happy and willing to help me for $15/ hr part time after she lost her job as a chef. When her housing situation fell through, I was able to offer to let her live with me and my family and work 40 hrs per week as we had an extra bedroom.  She was very happy as she no longer has to pay rent and I also provide most meals.  This has been such a relief to me, as she is on duty for 8 hours per day 5 days a week.  I am home most of the time anyway, but as you know it is more than a full time job for 1 person.  This allows me to get out of the house when I need to go to the grocery store or doctors appointments or my daughter's school functions.  Just having someone else here to help relieves a great part of the burden. It has greatly helped my mental well being.  All this just to say, ask around to people you know, people who have had care givers in the past who can provide references.  I really hope that you are able to find some help.

Cynbar

Nancelot is right, there are people around who "free lance", who work on their own and charge less than the $25/hr charged by agencies. However, most hospices and home care companies will only recommend agencies where the employees are bonded, insured, CORI checked, and supervised. It's a liability issue, but also a safety issue ---- when you hire on your own, you will get some excellent employees but also some who are poorly trained or possibly dishonest. I have actually known a couple people who had issues with free lancers. It all depends on your comfort level. You know the old saying, "When it is good it is very very good, but when it's bad it is awful."

MVChappy

Speaking from experience...I went down this road with my Mother...all the aid did was, raid the fridge & clenched the remote...You learn a lot when you show up unexpectedly...The last thing I need is more stress...I know the argument about trial & error... A caregiver on edge, is no one to be provoked...The big picture the health system has no provisions for Alz/dem patients.....period...they are left to tend for themselves....As I stated previously when the caregiver is on the verge of suicide, the only option is to drop the patient at the hospital , & when it comes time to release, usually in 24/48 hrs, you refuse to pick up the patient stating you are unable to give proper care.....I'm not at that point & hope never to be, but the caregiver is put into that position by the system.....This can all be accomplished without the expense of an attorney, pleading for Medicaid coverage...

Nowhere

MV- Hear snd trust yourself. You’ve admitted you’re fragile and losing patience. This is literally heart breaking. Maybe your wife is screaming as she has fracture? Take her to the ER and surrender. It’s too much for a spouse to bear. I feel for what you’re going through!  Wishing you both peace.

MVChappy

No she has no fracture...& as I said I'm not there yet...I have never hurt her in 48 years of marriage and won't do it now....nor will I abandoned her either...My frustration is not with her...its the system...and won't go any further on this topic....Its a darn* shame that people with Alz/Dem. can't get services they deserve....

Lynne D

I understand your “ light switch” issue. You have been a caregiver for so long that there is nothing else. Wishing you both peace.

Nowhere

MVChappy wrote:

I have never hurt her in 48 years of marriage and won't do it now....nor will I abandoned her either...My frustration is not with her...

Please understand I was not thinking that you’d ever hurt her! Also with frail individuals sometimes just by sneezing can break a bone. I’m learning that placing someone in another’s care is not abandonment. Taking her to the ER for end of life screaming pain is the way into “the system” of managed care outside of the home. You do not have to be suicidal. It can be about her. Whatever you need to do you have my admiration and support. You’re her hero either route.