Monday, June 27, 2011

Tools for Your Caregiving Tool Belt – Navigating Care Facilities and In-Home Care

Yesterday, we added education to your caregiving tool belt (and I’d like to thank Denise Brown of Caregiving.com for coming up with the awesome concept of a “caregiver’s tool belt”). It’s reassuring to know when caring for your loved one you are not alone and there are resources out there to educate you about the particular disease or condition your loved one is living with. Knowing as much as possible about what you and your loved one is dealing with will help so much when talking to medical professionals – throw intimidation out the window!

The focus today is on resources available when searching for additional care for your loved one. This can include either in-home care or a care facility.

But first comes the decision . . .

The Decision.

The first decision to be made is the type of care needed at this time. It’s important to remember the phrase “at this time” because carees will have different needs as their disease or condition progresses and our ability to help may change over time as well. It’s okay to admit this. All you can do is manage what is happening “at this time.”

Family Support. Although you, as the primary caregiver, are the one making the decisions regarding care it is important to seek out others to help make the best possible decision. If feasible, enlist the support of other family members to help decide if additional in-home care is needed or if it’s time to move your parent (or sibling or grandparent or other caree) into a care facility.

Each family is different but keep in mind offers of help may not come streaming in. As the primary caregiver, it may be necessary to set forth specific tasks each family member can help with. Many people will make vague offers of assistance but unless given a specific task (“please call three care facilities by Wednesday”) it won’t get done.

Placement Counselors. If your loved one is currently in the hospital or a Skilled Nursing Facility, the placement counselors can help steer you in the right direction regarding permanent placement or provide information on in-home care. This is not a time to be shy as many of these counselors are doing their best trying to manage a heavy caseload which may result in subpar recommendations. Since I am inclined to avoid conflict and stepping on toes, it took me a while to get used to the squeaky wheel concept but found that it does help to be persistent. I do my pushing gently, yet relentlessly (most of the time). I’m getting used to a bit of conflict!

Medical Personnel. Talk with your loved one’s doctor to get his or her opinion (although I personally don’t think their opinion matters more than yours). Think of them as an additional source of information.

The initial decision can be the most excruciating one for you but you know your caree more than anyone so you get to decide what is for the best. Treat yourself gently during this process and remember you are making the best decision you can. (If you’re interested in reading about my own difficult decision in placing Robert, you can do so here).

Care Facilities.

If you are confused by the different care facility options, a previous post explains “Where to Start.” Before placement in the facility, I suggest checking them out using the various consumer advocacy websites. Although the information listed here is specific to California, a cursory search of a few other states reveals the Department of Health and Human Services in other states has similar information.  These sites allow you to search each home and will list complaints, citations and fines. This information doesn’t tell the whole picture of a home but can indicate patterns of problems.

The Health Facilities Consumer Information Center (http://hfcis.cdph.ca.gov/)
California Advocates for Nursing Home Reform (http://www.canhr.org/)

Other Care Facility resources to help in your search:

California Healthcare Foundation (http://www.chcf.org/)
California Quality Care (http://www.calqualitycare.org/)
Local Ombudsman Programs (www.aging.ca.gov/programs/ombudsman_contacts.asp)
The Consumer Voice (http://www.theconsumervoice.org/) (a national organization)

If you are looking for help in how to search for a home please visit my “Always with the Checklists!” post which outlines the steps needed to find your loved one a suitable home (and yes, it starts with a checklist).

In Home Care.

I don’t have personal experience with in-home care but can provide a few tips to help get you started. If you do have personal experience with in-home care, I’d love to hear about it in the comment section.

I’ve heard great (and not so great) stories about both options of using an agency or hiring a family friend (or other personal referral). Several reputable agencies can be found with a quick online search for “in-home care.” Regardless of which you choose an interview and background check is essential. I would approach the hiring process much like a business (because, really, it is) and would interview even a personal referral.

Questions. Create a list of questions covering topics such as work history, skills and experience (both length of experience as well as experience with the particular needs of your caree). Get a list of references (work related; not their dear ole mom).

Interview. Start with a screening interview with just you and the candidate. You can probably weed out a lot of candidates with your list of questions without taxing your loved one. After you have culled your pool of candidates, ask them back for a 2nd (or 3rd even) interview. Include your loved one so you can observe the interaction between the two. Deal breaker: if the candidate doesn’t engage with your loved one but instead talks only to you.

Feedback. Get feedback from your loved one if possible once the interview has concluded and the candidate has left. If conversation is difficult, trust your instincts in whether or not the candidate is the right fit.

Background check. It’s great to trust your instincts but don’t solely rely on them to make a final decision. Conduct a background check. No exceptions! Many of the agencies provide this service but please don’t take their word for it. Request a copy of the background check so you can review it for yourself.

I’d love to hear what resources helped you when searching for extra care. Please share in the comment section below so we can all give each other a little help during this journey.

Next, we will tackle government agencies (yikes!) and end with caregiving support resources.

15 comments:

Verria Kelly said...

This is a very informative post. I'm currently not a caregiver, but I've had experience with in-home care years ago for my mother. The only thing I'd add to the tips you listed is to really get a sense of what type of person you're interviewing. Are they caring, loving, what brings them joy in their spare time? You can get a sense of a person's character by getting them to talk about something of importance to them and just listening as they share. You want someone that will treat your relative with love and tender are whether you're in the room or not.

Heidi Alberti & Atticus Uncensored said...

Very informative, but I sincerely hope I won't need to know all of this for a very long time...

Good work, Trish! I know this info will help many others in similar situations.

Heidi & Atticus
http://www.atticusuncensored.com
"commentary to give you paws..."

Franziska said...

Great and informative post! Very glad you provide all this information, it is so helpful. Love all the detail you put into it.
We took care of our grandmother when she couldn't any more. It was very tough because she refused to take help and she started dementia.

Just like Heidi said, I hope we won't need it again too soon! I think it is best to make precautions before you get into a situation when you need help and decide for yourself where you want to be taken care of. Of course that's not always possible but in many cases can be planned ahead, for those it's also great information. Thank you!
Bravo, very well written :)

Franziska San Pedro
The Abstract Impressionist Artress

Joan Oliver Emmer said...

Trish - at what point in his and your life did you start caring for Robert? I sense that you two have always been very close.

robert's sister said...

Verria, What a great add to the list! You would think all caregivers in the caregiving profession would be loving, caring and kind but it is, sadly, not always the case. I love the question about their spare time and what brings them joy. That tells a lot about a person although the HR person (who works for lawyers) in me knows to tread carefully with this question. You don't want to open yourself up to any claims of discrimination and, believe it or not, questions about outside interests can sometimes do that. Thank you for adding to my list!

robert's sister said...

Thanks, Heidi. I hope you won't need to know this either but if you do, I hope this helps!

robert's sister said...

Thanks, Franziska! It must have been difficult to care for your grandmother when she refused your help. Everyone reacts differently but that is a common response. Dementia can do terrible things to a person's personality too not making caregiving very easy! I wish for you, too, that you won't need this info anytime soon. Take care.

robert's sister said...

Joan, I think most people will be surprised to learn that Robert and I were not always close. Robert had a lot of behavioral issues growing up so was difficult for me to connect with him. As an adult, he lived independently (with a companion who also had epilepsy) and our family oversaw his care during this time. Only about 3 years ago did I take over his care full-time due to a terrible infection he had and a rapid and steep decline in his functioning. Your family is who you've got and sometimes, you just have get past any family issues and do what is necessary. I'm fortunate that I am close to Robert now and wouldn't trade the experience of caring for him for anything (well, except him being well).

Judy Stone-Goldman said...

I wish I had had more of this information available to me when I took over care of my father and then my aunt. It's such an overwhelming experience. I look back, and I hardly understood anything about different service options or payment requirements. I never looked into home care although I wished it would have been possible for my father--at least I thought it sounded desirable at the time because I didn't want him to have to leave his home. In the end, finding a good facility brought me a great deal of comfort.

This kind of info is invaluable. Great job.

Judy Stone-Goldman
The Reflective Writer
http://www.thereflectivewriter.com/blog/
"Word maven loves--and learns from--ordinarily life."

robert's sister said...

Thank you for sharing your experience, Judy. The decision to choose either a care facility or home care is such a difficult one. So often, no matter what we choose, we wonder if the other option would have been a better choice. I am happy you were able to find a good facility for your dad. It does bring comfort and relief (and much less worry) when that happens.

bccmee said...

I agree about the background checks. Also, go with your gut. By that I mean try to find someone who shares your values and lifestyle. If you feel better with an efficient no-nonsense style caregiver, then don't choose a free-wheeling hippy type, and vice versa. It goes both ways.

robert's sister said...

That's a great detail to add, bccmee. I agree that "style" is important to consider. Sometimes it may be a bit of a struggle if the caregiver has a different style than their caree and trying to reconcile both with who they hire. I think it works best for both the careee and caregiver to have a positive connection with the person they hire so if there's conflicting opinions, it just might take a few more interviews to find the perfect match. What a process! :-) I always appreciate your comments and insight. Thank you!

Fiona Stolze said...

Hi Trish

I'm really impressed by the depth of focus you bring to this. I don't have any experience at all of this but can see that it's a valuable resource to others needing help and guidance.

I love the thoroughness with which you approach all of this, interfused with your deep loving care.

Keep up the good work. Bless you.

Fiona Stolze
Inspired Art and Living
http://fionastolze.com

robert's sister said...

Thanks for reading, Fiona! If you ever do find yourself in the caregiving role, you know where to find me. :-)

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