Finally approved by VA for in home help.

Joydean

We got approved for help. I was excited but also apprehensive. Guess it was loosing control and trust issues. The lady came last week and she is very nice, DH seemed to like her. I stayed for the first hour to just see how he would react. I then went to the bank to take care of some business that I have not been able to do with him with me. She was back on Thursday and I went to take care of more business. Tuesday this week I had dentist appointment. So I was hoping today I could just do something for me. DH told me this morning, I guess you’re going to desert me again! I didn’t know how to answer him. So of course I felt guilty for wanting to just wanting to do something for myself. I stayed home and he followed me around all day. He kept asking me why do you keep leaving me? I was changing his bed and trying to get some house work done. I don’t know if I’m just feeling sorry for myself, or if I’m frustrated. Maybe I’m asking if others have gone through the same thing and how did/do you handle it? Every day I still take him somewhere. It’s not like he doesn’t have my full attention all day.

Dio

Joy, OMG you're telling my story! My DH also says the same whenever I want/need to leave him alone. He's petrified that I plan to divorce and leave him, unfounded fears all around. So there are days when he acts it out, like packing his luggage all the while muttering, "I'm homeless." I don't know how to convince him otherwise.

Joydean

Dio, sorry you are going through this. Some days are truly harder than others. I truly wish there was a way we could reassure our loved ones that we will be there for them. Wishing the best for you and your love one.

ButterflyWings

Joydean - I'm so happy you are getting this started though! It is a process, we know, and if the aide seems like a good fit so far, I feel like that is a win.  And you will have to get accustomed to giving yourself those short getaway breaks. He will get used to it, and get used to you coming back with a treat or something maybe?

My DH has no short term memory anymore, so even the hospice CNA that has come for 1 hr weekly for the last several months is "new" and suspect every time he "meets her for the first time", (over and over again).

So, I have always prepped his lunch or snack to distract him a few minutes after she arrives. Then I bustle around in and out of the room a few times, staying longer each time. I may tell them I'm just going to take the garbage out, and then I sneak away for my quick errand to post office, bank drive through, or quick grocery run for a very few items.

When it was cold outside I forgot to remove my coat before rejoining them once and he scolded me with "You left me" in a very accusing tone. I told him I'd never leave him...might run a short errand to pick him up a treat, but that I would ALWAYS come back to him. Lots of schmoozing and did indeed have a drive-thru meal for him fortunately. 

BUT, we also got VA help started recently and in the last week and a half with a new person for longer time periods, I didn't even try to leave. I shared in another thread that her start date was a surprise so I actually didn't get the chance to make any appointments or plans.  Rolling with it, I figured that was OK and we'd just start getting to get to know each other, and get DH used to her being around. But it became clear quickly that she was uncomfortable with how mobile and independent-minded he is. My DH is late stage but not as helpless and compliant as she was used to. She didn't encourage me to "go on, we will be fine", as the other person always has. 

Interestingly, she spent a bit of time on the phone a couple of days, unashamedly trying to coordinate a more appropriate schedule and assignment for herself. Nice lady. Just not a good fit and she had no qualms about being a no-show on day 6.  

shardy

Can I be nosy and ask how much and what type of care the VA provided?

I received a few days from them.  30 I think, but for the rest I'm on my own so was curious if they offer something I'm not aware of. It seems here they are quick to offer anything you ask for, but, you have to know what to ask for.

Jim has no problem with my leaving him and never asks where I have gone or what I have done or anything. he couldnt care less ..I guess I should count that as a blessing.

Joydean

Butterfly wings, thank you. When the supervisor’s for the agency the VA set us up with, came to do their assessment they were very nice. Did not ask any questions that would upset DH. David can’t say a whole sentence because he can’t get his words out. They asked him what branch of service he was in, when he talks about his time in Vietnam he has very little trouble with his words. (Sadly that’s where he is most of the time). They told me the lady they thought would be best fit for David was a lady that most of her “people “ were veterans. David did/does like her. I don’t know if something was going on in his head Thursday or what. I had promised him I would take him to his favorite little place for lunch. My head try’s to understand his insecurity but my heart is having a hard time with it. I know I need time away from him (5 straight years 24/7 is wearing). Know so many have been doing it longer! Thank you for listening and for being here for me. 

Prayers for you and your dear husband! 

Joydean

Shardy, we got approved for 11 hours a week. Honestly I had only asked for 4 hours (I didn’t think we would get anything) but dh’s PCP said she was putting in for 3 days a week!  So I’m very grateful for this blessing. I was told by the supervisor of the agency if they observed that more time was needed they would request the VA for more time. I don’t know if that’s really the way it works or not. DH is in late 5, middle 6. His psychiatrist has him listed as moderate  to severe. 

He can’t do ADL’s or IADLs. Has trouble trying to get words to speak. 

Hope this helps and good luck to you. 

jmlarue

Thanks for that info. My appointment with Caregiver Support was pushed out to next week. Your info gives me a better idea of how much help to ask for. I don't know if it's possible to find an aide that can be both chore worker and caregiver while I leave the house. If not, I think I will ask for a chore worker to take some of housekeeping and meal prep burden from me. DH is insensible and can't be left alone, but he's not incontinent or incapable of doing very basic self-care. Any care aide would be simply in a babysitting role - keeping him safe and occupied while I get away from the house. I'm looking into the possibility of finding some volunteer help with that through our church and the local senior center.

Joydean

Jm, the documents that I got shows the caregiver will do light house keeping and will prepare lunch for DH. So far I haven’t asked her to do that yet. But I’m sure I will as I feel more comfortable with all of this. I’ve never had anyone to help me before and this is kinda strange feeling. Truth is I’ve been taking care of DH since 2001. He was in a very bad accident on his job, beside all the broken bones he also had a head injury. He spent 3 years in physical rehab and 3 years in cognitive therapy. He has never been the same person since then. 

Do get all that you’re asking for in writing! I’m sure you know that. 

ButterflyWings

Shardy - Sorry I missed your question. Yes, VA and the HHA agency said 11 hrs/week is typical but the VA social worker requested 16 hours for us once the Dr. put his diagnosis in his file. SW said since he is on hospice the support provided is higher, understanding the 24/7 care a family member is providing. You got the Cat D- P4 status approved, right? (Still waiting here. 90 days and counting). I would highlight that status though and seems like you should be approved for the highest amount of weekly hours based on that alone. 

Approved tasks: Yes our paperwork also says errands, prep meals and clean-up of patient's immediate spaces is expected. It says light housekeeping is OK once all physical and immediate care of patient is handled (assistance with ADLs is first). So, changing his linens, laundry, light cleaning of bathroom after his use, clearing & cleaning his dishes, dusting bedroom, making bed, sweeping floor where he eats and sleeps - that all seems like fair game though we did not get to that yet. The intake person said I could ask the aide for other help once everything else was done...within reason, to help the spouse caregiver. I assume things like loading the dishwasher, helping with meal prep, she offered to take out the garbage 2x on her way out. Probably makes sense to make a list. Dusting would help us, and dust-mopping which is not heavy lifting and benefits the PWD too, but not only him.

Weekly allotment: We were approved for 15 hours/week. But 2+ months later the agency had not sent anyone. In my spare time (rolls eyes) I finally got on top of this and was told they never got the authorization. VA says they sent it. Back & forth. Yada yada. So I really need a HHA and a few peaceful hours after all this, right? 

Fast response after I commit to calling and emailing daily But, success! A whirlwind intake and knock on the door next morning (8 a.m. surprise - "I'm your new aide!"). We adapt.  Note: Three, 5 hour days weekly with a new person is a lot when you didn't expect it to start yet and have nothing planned out (so I hadn't scheduled the appointments I've been putting off awaiting HHA ). Week #1: getting acclimated. Week #2: underway, not perfect but what is? However, after 2nd day (Day 6 of assignment) the aide is a no-show. Face palm. Agency's response was less than professional. Now I'm mad. VA says maybe we need a different agency. I think I agree.

jmlarue

Thanks for the insight on the VA benefit Ladies. Just when we think we're finally getting somewhere with our pleas for help, why is it something always seems to go sideways? I don't really expect my DH to exhibit separation anxiety or paranoid thoughts that I'm sneaking away to meet another man. His emotional and irrational periods are after about 3:00 pm. It's probably unlikely that I'd be seeing the services of a home health aide in the late afternoon, so it shouldn't be a concern.

Butterflywings - your post sounded so encouraging - right up to the end where the VA let you fall through the cracks and never bothered to follow up with you. Excuse me if I sound naive, but I would think that follow up would be an essential part of the social worker's responsibility. Some of these folks are just a joke. "Maybe we need a different agency?" Gee - ya think?

ButterflyWings

jmlarue - happy to share any information and it is possible your experience will go a lot more smoothly. I'm laughing with you, at my interesting saga. Wasn't laughing the other day, but mainly because this is really exhausting trying to just get people on the same page to do what they've promised. 

I don't blame the VA at the end of the day for this, nor the awol caregiver actually. It is the agency's responsibility to at least try to identify a good match and I don't think they did that at all. Maybe the shortage of aides is at fault...which really is a thing...but also it was their office's offensive reaction to my calling to ask her whereabouts that makes me agree with the VA, that if this is how they are starting off it is best to move on now. There's a new SW btw, but a whole different department that works with Community Care or HHAs or coordinates that. So...

It makes sense to me to cut our losses rather than consenting to their lax attitude and maybe setting up a revolving door of aides that aren't even really vetted, nor held accountable for some basics. I'm not able to deal with that really. If I were desperate, maybe.  Probably not. My patience is running thin these days. This agency was 2+ months late responding and I see your point that is seems the VA could have followed up after sending the authorization out, to monitor the status (still unclear if the agency or VA dropped the ball on the paperwork- but the rest is 100% on the HHA agency): 

• no advance notice before sending someone out eventually, 
• messed up the schedule so she had to do a 6 hour day once, to make it up. Didn't ask me
• apparently just slotting her in to keep her on their roster until a better client/schedule match came up, 
• then "the straw": accusing me of not being home or not answering their call for an hour as an excuse why she did not work on Day 6 as planned... (what?)...
• their coordinator apologized to me after they realized they had written my phone # down incorrectly during the intake appointment, and that I called them on the day in question.

All in all, I feel for all the essential workers in these roles. I know it seems they are getting asked to do more shifts for less money, and the families are losing out in the end. But I also believe it can work out. The agency sets the tone and this one at least, is tone deaf.

Joydean

Butterfly, you are so very right! It is the agency’s responsibility to have the right people. They are getting paid good money from the VA! The agency that we have gave me a link so I can see what our caregiver reports back to them, the time they clock is and out from our house. It also shows what they are billing VA. That part surprised me. 

I sure hope both you ladies start getting better help soon! Hoping mine stays okay! Keep us updated please.