Preparing for in home care

Belle

Yesterday I had a semi-productive meeting with a VA social worker. We have been offered up to 30 days of care in our home, the care will only be for 6 hours a day. In addition, they have one single respite bed (for hundreds or more vets) at their facility that is available for up to 14 days but those hours will be deducted from the 30 day home aid limit.

So my question is what did you do to prepare your home to have someone in while you were out? Also, what tasks did the aid perform? My DH can perform his ADL's but only if you queue him to do so (except toileting he can handle that on his own). I appreciate any tips you can give me.

M1

Belle does it have to be consecutive, or can you ask for once a week for 30 weeks? That would give you a little respite over the next six months....and I would also ask if they are having any staffing difficulties. A lot of people aren't able to get reliable staffing even when the hours are approved.

I know that doesn't answer your question. We never were able to find anyone, nor do I think my partner would have accepted it. I've read here that you probably should be there for the first time or two. With only six hours, it may be mostly companionship and fixing a meal. You probably want to ask if any specific tasks are prohibited (Giving meds, housework and pet care, for example).

marier

Belle : my husband is a vet and I have taken advantage of the benefits the VA has provided. My initial visit with social worker regarding the services provided didn't give me a clear understanding. I spoke to another social worker and asked allot more questions. I do know the VA services do vary from state to state. Initially i thought the 180 hours of respite care was all basically I would receive. So I had to choose between having 14 day inpatient or in home help or the day program. After discussion I found out my understanding was not correct.

The VA in Phoenix provides the following to my husband: 180 hours per year of respite care. I just need to use 4 hours min. up to six hours per visit. Adult day program up to 5 days a week. They provide assistance up to 13 hours a week with helping me shower and getting him up in the morning . This 13 hours week also includes if needed light housekeeping) They also provide respite inpatient stay at a nursing home up to 14 days a year( it might be 30 days). In addition to this they provided me with durable medical equipment. All of this free of charge. My husband is not service connected. The day program, the 13 hrs a wk for showering and inpatient respite is not deducted from the 180 hours a year of respite.

I found out that a helpful primary care doctor or physician assistant is necessary to help get the ball rolling toward obtaining benefits along with a knowledgeable social worker. I have been extremely pleased with our VA not only with services provided but with the medical care as well.

Belle60

https://alzconnected.org/discussion/comment/198499#Comment_198499

I know you are in Phoenix but how did you access the services. How did you set up an appointment with primary care. I know that is a basic question but I keep running into road blocks when attempting to set up the appointment with primary care. And can he keep his civilian doctors while getting services with the VA?

marier

My DH became connected with the VA by applying to receive care. The initial appointment wait was just a couple of weeks. Then the different referrals were made by the primary care team. He also did see a private MD for couple of years for his liver transplant. Then his GI dr retired and almost all care was provided by the VA. Then with the dementia struck we initially treated at Mayo, then I switched to Banner Alz. institute.

The neuro at Banner makes the recommendations for rx sends the request to the VA pharmacy and the primary care doctor at the VA approves. I just started doing this since there is no copay. However for several years the rx's prescribed by Banner were paid for my medicare and private insurance.

I would check with your VA to see if they have a geriatric specialist or team. If they do then that team social worker would be a good to connact for additional help. Initially when applying for care my DH just called and was able to set an appointment to be seen and the initial application was done over the phone. You do need his DD214(I think that is what it is called).

I hope this has been helpful to you.

Belle

@M1 all good questions. The SW is new and I've noticed a lot of gaps in her knowledge. I will check further to validate what she told me. I also doubt DH will like someone in the home and I am not too thrilled since we have had less than good experiences having people in our home for other purposes. He also doesn't qualify for adult services in the county we live since he's not yet 60. No good choices really.

@marier Thanks for the additional info. I thought the VA provided the same care regardless of location but I'm finding that may not be reality. We do like his PCP but are about 50/50 with other specialists following through. They never provided cognitive rehab or the MRI we were told he'd get. Luckily we have private insurance too that has covered the gaps the VA left.

@Belle60 is your DH service connected at a level where he qualifies for VA Health or does he have other circumstances that are eligible for VA Heath care? I'll link a page from the VA that discusses who qualifies. Once DH was approved for disability it was pretty easy to get appointments (he is priority group 1). We also have private insurance and there is no issue with having both VA and private healthcare. We actually find it helpful to fill in the gaps.

https://www.va.gov/health-care/eligibility/

ButterflyWings

Ask about Catastrophic Disability status. It increases your VA LO's priority status unless they have a higher priority service connected disability. With a dementia diagnosis, approval is automatic and applications are supposed to be approved within 30 days (it took 90 for us).

Catastrophic disability status provides automatic home health aide and respite care hours at the maximum level.

• Here are some prior posts about this. https://alzconnected.org/search?domain=all_content&query=Catastrophically%20Disabled&scope=site&source=community

OhDear

https://alzconnected.org/discussion/comment/198499#Comment_198499

What does home care do? My DH resists home health care. We've tried but he gets upset when someone tries to help him, or touches his things. He doesn't play games or puzzles. I'm at a loss.

ButterflyWings

@OhDear

Our initial home care (Home health aide-HHA) provided companion care. They did not really engage with my DH much but a little bit of conversation and he liked her OK. She was there for 30 minutes to an hour, once a week. This allowed me to run a super fast errand, do yard work, take a bubble bath or once I had been up all night and actually just took a nap. All of which I could not do during the time that DH was refusing to leave our house (unless sneaking out alone) and DH was determined and super-quick with exit seeking so he required line-of-sight supervision. (Without him knowing he had a glorified "sitter" watching him).

It worked fine with our first hospice CNA who was allowed to modify her task list since he did not accept any physical help with toileting except from me and even that was reluctant. He flat refused showers or baths even from me, so she was allowed to visit anyway so he'd get used to me not being there, at least briefly. I used to say I was going to take out the trash. The first few times I puttered in the kitchen and then in the yard. The first time I took the entire 30 minutes he was clearly miffed when I got back and said "you left me". She got in the rhythm of chatting him up about something and he got used to me leaving and returning so it was worth it although such a short time.

• Here is a list of tasks from 1 agency we used after that. Although I was paid for 15 hours a week initially, and then 30 hrs a week as the caregiver at the time since it was during COVID. That program has now ended and spouses are once again ineligible for AgeOptions via Medicare (which is a sad thing, I think. Why discriminate against spouses? Especially since we do all these caregiving tasks and more, for way more than 30 hrs a week). And we can't call in sick. Ever.
• Caregiver's Tasks - checklist had FA (full assistance), A (assistance required), R (reminded to do task):
  • Eating, Bathing, Grooming, Dressing, Transferring, Continence, Telephoning, Prep. Meals, Laundry, Housework, Routine Health, Assist Outside, Being Alone, Transportation, Errands
• Another agency we used via VA had way more detail, with HHA Tasks broken down in 5 categories:
  • Personal Care, Household Cleaning, Meals, Activities, Errands
  • Personal Care: Transfers from — to — e.g. Chair to Bed, etc. or Help with: Shower, Bath, Dental Care, Nail Care, Combing Hair, Shampoo Hair, Empty Urinary Catheter Bag, other (describe in notes)
  • Household Cleaning: Changed Bed Linens, Made Bed, Dusted Rooms, Swept/Mopped, Vacuumed, Laundry, Cleaned Kitchen, Cleaned Bathroom, Mended/Ironed Clothes, Sorted Mail, Pet Care
  • Meals: Set-up Meal, Assisted with Feeding, Meal Prep (which meals, what foods), Bkfst, Lunch, Dinner, Snack, Fluids
  • Activities: AM Walk, PM Walk, Visit with friends, Read Magazine or Book, Games/Mental Exercises, Encouraged Exercise, Other activities (describe in notes)
  • Errands: Dr's appt., Grooming appt, Grocery/Supply Shopping, Dry Cleaning, Other errands (list in notes)

Our current home health aide (HHA) is only doing companion care right now, I'm sorry to say. And zero conversation or engagement with DH. I really could use the light housekeeping help every day since DH is still line of sight and arm's length but I am here almost all the time and do all his personal care and meds (HHAs cannot administer meds). It is nice to be able to leave if I need to run an errand, but I don't want to HAVE to leave my home to take full advantage of the HHA helper. And I don't really need someone to just sit here with us, in silence, for several hours a day. Maybe I can share the above checklist with the new agency and get them to update DH's care plan and coach her on the changes.

Glad you asked the question! It is worth getting used to accepting some help at home, as both the PWD and caregiver have an adjustment period.

OhDear

Thank you so much - I didn't know what to ask for. Although my DH doesn't take off without me (Thank God!), he could use some companion care. I could use some time to get my hair done! Tonight he accused me of leaving him with "her" (that is, me) all day anyway.

Thanks for your help!

SDianeL

I used the VA Caregiver services for several months before I had to place my DH in Memory Care. I planned it so I took one day per week to run errands, etc. She arrived about noon and stayed until 5pm. She really didn't do any other tasks but they will prepare a meal and wash dishes if you need them to. She basically just sat with him and listened to him talk. They do not give medications.

Bill_2001

I am happy someone found home health care to be helpful. I have not.

Our home care giver was nice enough, but she did not really -do- much. She was not authorized to give medications, and she was not strong enough to help my wife stand up or get to the bathroom. I found myself just babysitting her and my dear wife until the 'helper' went home. Colossal waste of time.

I tried meals on wheels the year before that. My wife ate the cookie and threw the 'meal' away. Another waste of time.

No one 'helps' me with my wife at home now, but at least we have our Saturday back. LOL.