Connecting with the Social Worker

LadyTexan

I followed up with the HHA this morning because I still had not heard from the medical social worker. The MSW called me about an hour later. The phone call was both a relief and a disappointment. 

A disappointment because when it came to identifying resources, I had already identified and contacted all but one of the resources the MSW told me about. I also informed her of local resources that she was unaware of.

A relief because I realized that I was on the right track by contacting the agencies and entities that I have already. Plus the MSW made a referral to a state agency that I had not yet contacted.

When the HHA nurse came for her appointment today, she brought a member of the HHA "transition team". The Transition Team member works on the hospice side of the HHA. The nurse explained that the HHA team discussed my situation and felt the "transition team member" would be "helpful in identifying resources" to benefit DH. The hospice guy, did identify some websites that will be helpful for us. 

I couldn't help but think the hospice guy was getting a preliminary look at DH. Of course there is nothing wrong with that. Hospice is such a valuable and helpful service. Someday we will need that service. I was caught off guard by the guy's unexpected presence today.

Cynbar

So was the phone call just for teaching on resources? Did she offer support of any kind?

I actually do think that the hospice visitor was there to assess the situation, or at least start that process. It doesn't mean your DH is ready yet, but the conversation is starting. Otherwise, there would be no reason for the transition team to stop by. I'm at a similar crossroads with my DH, the conversation is coming up more often. It's a hard step for me to take even though I know how much ongoing support they can give. Don't forget that your certified services won't last too much longer, they are meant to be short term. They are probably deciding if he is eligible for hospice and whether they can offer you that option. 

LadyTexan

Cynbar - 

I have decided that I really don't know the purpose of the medical social worker. I am NOT joking here. 

I think the call was mostly teaching on resources. My understanding was the MSW will help me find resources available for DH and me on this horrible journey. For example, Meals on Wheels. Although DH is disabled, he is not yet 60 so he does not qualify.

The MSW also made a referral to the Texas Department of Aging and Disability Services (DADS). I don't even know what the purpose of the referral is. She stated the referral had to be made by a healthcare professional and that I could not contact DADS directly.

Again, and I am not joking here, what do you mean by support?

The more I travel on the dementia highway, the more lost and confused I feel.

ladyzetta

Lady T,      It sounds to me like they are trying to help you. They are probably putting together all your options. Please don't let this upset you, you have way too many other things to think about now. You are a real good caregiver for you DH, please let others help you if you have that option. As you know as things progress you will need help.  I really don't know how you do as much as you do. Your amazing. Help is good. Hugs Zetta

Jo C.

Do you know for how long your husband is certified for this agencies services?   What are your expectations and needs with a Social Worker and other possible services through the limited services of a HHA?

 It is true that in many organizations, Social Workers will have different job responsibilities.  Some are specific only for informing or connecting clients with services; this sounds what the SW you spoke to is for.   If you have specific realistic needs regarding a SW, then it is important to let the HHA supervisor know your needs and expectations which they may or may not be able to provide..  Since this is a HHA, they may or may not have additional SWs who perform other duties. It can also be a disappointment to find out how limited social services can be when facing such complex needs that seem to fall through the cracks.

Many HHAs are not that large and are not SW staffed for anything more than connecting clients with services; that is primary to SW.   As it is, HHAs themselves are always limitied for how long their services can be provided and  are for current sub-acute physical  needs of ongoing direct patient care as defined by the third party payor, and also for necessary crucial needs for ongoing assessment also as defined by the insurance providers. Definitions for service approval is fairly restrictive.   Services are limited for what they can provide and for how long they can be assigned to a patient.  Whatever source of coverage the HHA will have will be limited and as said, as defined by insurance or other third party payor from the state or other government entity.

It appears from what you have written, that they may be trying to assess the entire range of service possibilities that may be needed for the here and now and also for the future; that is a good approach considering the limited time that the agency is approved to work with you.

Some SWs have certifcation that permits them to do counseling; many do not, the range of education with an LCSW permits a broader range and scope of service.  (In NHs, many "SWs" are social work designees without a degree; or they will have a BS degree which is very low level in the SW education hierarchy; most of that work at most NHs will be for ordering transportation  to hospitals, doctor's offices, etc./and ordering for assistance or equipment for a discharge to home and interaction with family as needs be.)

Zetta is correct; the agency was trying to assist within the scope of their own capabilities for the limited time available.   Having Hospice come in as part of an assessment group is actually a good thing.  They are doing a global long term potential assessment as things are not only for the here and now, but for possible future needs.  Hospice can also assess the need for Palliative Care assignement if insurance covers that.  Hospice coverage is not a problem issue for coverage, but in many instances the lower level of Palliative Care may be different for a person's said coverage.  In Palliative, there would be some intermittent oversight and ongoing assessment.  In Palliative unlike Hospice, the patient can still use "curative" care for whatever health condition pops up and may use the ER and inpatient acute hospitalization.

As far as being referred to "DADs," that is a positive.  It seems you do not know what DADs can and cannot do for you now or in the future; so when you have a few minutes, give them a call and speak to a supervisor or case worker (not a clerk) and find out their scope of services.  From what you have written, it sounds as though one needs a referral to access that agency; you now have that.  They may (or may not) be able to provide a broader scope of assistance for whatever actual service needs there are.

Your husbands situation has been unique and very complex; every bit of knowledge is another link to assistance or a link that tells us we need to move in a different direction or different scope of expectation.   Unfortunately, in this country, we do not have much in the way of bridges to assist the elderly and those with dementia who are in need and especially when finances are an issue. That is a deep lack that never seems to carry weight in those who actually have the power to legislate.

You have your DH home; even though the behaviors seem to be controlled, it is still a huge set of significant care issues that have no time schedule; they are there 24/7.   It may be that as your DHs disease progresses, you may be able to continue his care in your home; but it may also  be that home will not be the best setting for either of you and an alternative living setting may become an actual necessity and may be covered by Medicaid.  That would not be a failure on your part; you would still be a caregiver; just in a different sort of way and one in which you can be the loving spouse and not an overwhelmed, overworked exhausted person.

You will be best at assessing when it may possibly be time to make a change or not, in the meantime, you are doing as best can in a situation that has no good answers. Therein lies the challenge of it all as I also learned.  Though I could always find an answer and slay any challenging dragons; with dementia, I was to learn I was in error of self-expectation.   Seems that on my multiple dementia caregiving journeys, I learned a lot the hard way.

Big strong wishes for the best that can be under the circumstances for you,

J.

Jo C.

Do you know for how long your husband is certified for this agencies services?   What are your expectations and needs with a Social Worker and other possible services through a HHA?

 It is true that in many organizations, Social Workers will have different job responsibilities.  Some are specific only for informing or connecting clients with services; this sounds what the SW you spoke with is for.   If you have other specific and realistic needs regarding SW, then it is important to let the HHA supervisor know those needs and expectations which they may or may not be able to provide..  Since this is a HHA, they may or may not have additional SWs who perform other expanded duties.  It can also be a disappointment to learn that SW, no matter how good they may be, does not have full range of services in the community that will meed our specific and largest needs as that quite often does not exist. 

As it is, HHAs themselves are always limitied for how long their services can be provided and  are for current sub-acute needs of ongoing direct patient care as defined by the third party payor, and for necessary crucial needs for ongoing assessment also as defined by the insurance provider.  Their services are limited for what they can provide and for how long they can be assigned to a patient.  It appears from what you have written, that they may be trying to assess the entire range of services that may be needed for the here and now and also for the future; that is a good approach considering the limited amount of time that the agency can work with you.

Some SWs have certifcation that permits them to do counseling; many do not, the range of education with an LCSW permits a broader range and scope of service.  (In NHs, most "SWs" are social work designees and are not degreed; or they will have a BS degree which is a lower level in the SW education/knowledge hierarchy ; most of that work at most NHs will be for ordering transportation to hospitals, doctor's offices, etc.and for ordering assistance or equipment at home if there is a discharge to home and directing families to where they need to go for problem issues in the NH if family makes contact for that.)

Zetta is correct; the agency was trying to assist within the scope of their own capabilities.   Having Hospice come in as part of an assessment group is actually a good thing.  They are doing a global long term potential assessment as things are not only for the here and now, but for possible future needs.  Hospice can also assess the need for Palliative Care assignment if insurance covers that.  Hospice coverage is usually not a problem issue, but in many instances Palliative Care may be different for a person's insurance coverage.  In Palliative, there would be some good oversight and ongoing assessment.  In Palliative unlike Hospice, the patient can still use "curative" care for whatever health condition pops up and may use the ER and inpatient acute hospitalization.

As far as being referred to "DADs," that was a positive referral.  It seems you do not know what DADs can and cannot do for you now or in the future; so when you have a few minutes, it would be helpful to give them a call and speak to a supervisor or case worker (not a clerk) and find out their scope of services.  From what you have written, it sounded as though one needs a referral to access that agency; you now have that. 

Your husbands situation has been unique and complex; every bit of knowledge is another link to assistance or a link that tells us we need to move in a different direction.   Unfortunately, in this country, we do not have much in the way of bridges to assist the elderly and those with dementia who are in need and especially when finances are an issue.  Seem our legislators never have this on their agendas for concrete where the rubber hits the road issues and let it slide. Evidently not a re-election issue for them.

I always thought I could solve any problem; slay any dragons, but when dementa entered our lives, I learned the hard way that no matter how I tried, that was no longer within my power. I learned many of my dementia "lessons" the hard way.

So hope that you will find more assistance.   I know you have wished to keep your DH at home and will strive to do so.   It is a 24/7 bundle of ever evolving needs and happenings.  If you can continue that is great; but one  have one is served best to have an inkling that sometimes continuing at home may not be in either the caregiver or person with dementia's best interests.  If that should happen, then one moves forward for an alternative setting for care which sometimes is covered by Medicaid.   If that should ever occur; then it is important to know that it is not a failure on your part; you will still be a caregiver, just in a different sort of way without being exhausted and overwhelmed which permits you to be the loving wife without that falling apart feeling.  You will know what is best in your circumstances and capabilities.

J.

loveskitties

I wondered if Google would have any info on what DADS services are...so off I went.

There is a page on Texas Health and Human Services from 2017 which says all remaining DADS services were moved to the Health and Human Services organization.  It says to visit their website www.hhs.texas.gov

At that website they mention an organization called Community Resource Coordination Group, which is located at crcg.hhs.texas.gov  If you go to their Get Help page, you can put in your location and find out who to contact

Hope some of this helps

LadyTexan

Thank you Cynbar, Zetta, Jo and Loveskitties. This helps so much. The original schedule indicated:

• Skilled nurse 1 time per week for 8 weeks
• PT 2 times per week for 3 weeks then once the following week
• OT 2 times per week for 3 weeks

Yesterday, the OT supervisor approved another 3 weeks of OT.

PT is coming today and we have a telehealth appointment with our PCP this afternoon. Then next week, there is a telehealth and our first trip to the dentist in over a year. Just scheduling med appointments and managing meds, takes a lot of juggling.

Somedays I feel like I have been plopped down in a foreign land, where I don't speak the language, don't have a map and have no currency. Little by little, with the help of kind people, like you all, I will get better at this. Some day I will be the kind person that helps whoever is plopped down in the foreign land next.

Blessings to you all.

Cynbar

By support, I meant emotional support and goals of care planning. A MSW visit should be an assessment in a conversational way, not too many direct questions. I would want to find out how both of you are coping, especially in light of the recent history. Do you feel this is manageable or not? Do you ever feel overwhelmed, and if so, how often? Are you knowledgeable about his medical issues and realistic about the challenges ahead? Are you glad you brought him home? Have you given any thought to a long term plan, and the finances connected with that? Her analysis of these areas should dictate her next steps, either a couple more SW visits or suggestions for more specialized services such as a counselor. Hopefully she engaged in some conversation to help her assess if you are coping well, or not.  If she just went over resources, it was not a very skilled assessment.

Certified home care is meant to be short term. The certification period is for 60 days and it is rare that services extend beyond this --- often, they stop earlier. The goal is to get things under control, teach resources and safety tips and exercises to the patient and caregiver who then continue on with what they have learned. Social work is an important but auxiliary service. It is not designed for counseling, but basically to assess coping and put a plan in place (including resources) going forward. The medical social worker for a HHA should be master's level with the highest possible license ---- this gives her the skills and expertise to quickly assess and devise a plan to increase chances of success. Usually 2-3 visits, or fewer, will be sufficient. She also ideally would consult with other members of the team to assure that everyone is on the same page re: goals and expectations for your future.

LadyTexan

Cynbar wrote:

By support, I meant emotional support and goals of care planning. A MSW visit should be an assessment in a conversational way, not too many direct questions. I would want to find out how both of you are coping, especially in light of the recent history. Do you feel this is manageable or not? Do you ever feel overwhelmed, and if so, how often? Are you knowledgeable about his medical issues and realistic about the challenges ahead? Are you glad you brought him home? Have you given any thought to a long term plan, and the finances connected with that? Her analysis of these areas should dictate her next steps, either a couple more SW visits or suggestions for more specialized services such as a counselor. Hopefully she engaged in some conversation to help her assess if you are coping well, or not.  If she just went over resources, it was not a very skilled assessment.

Lady Texan response:

Thank you Cynbar. Seeing your questions and thinking about my responses is very enlightening to me. When I consider my expectations and what is realistic, I see gaps. That is important for me to recognize and address. As a list maker, I am going to address the questions you posed so that I can have a more focused and productive conversation going forward. THANK YOU SO MUCH.

Ed1937

Lady, you have been through, and are still going through a lot. I wish I had something I could add to help, but I have nothing. Just know that we are here for you to prop you up when you fall. I hope things work out well for you.

Cynbar

Glad I could help. This is where the MSW can be most useful, by helping you clarify everything in your own mind. It is so important that your expectations are realistic, both your strengths and limitations as caregiver,  and your DH's abilities and gaps. When you have a clear view on that, the road ahead is a lot less murky.

Jo C.

Tis initially a tangle for many of us.  I have often Posted that if we do not have an accurate diagnosis for type of dementia, it badly affects the treatment plan which may even be contraindicated.   I have likened that to being parachuted in the dark of night into a foreign land but we do not know which land; we do not speak the language whatever it is, do not have any currency, are told we need to get to a certain place but have no map and we must meet a goal but no one has told us what that goal is.  That truly is how I felt at the beginning of my first LOs journey with dementia - and my poor LO had indeed been misdiagosed for type of dementia with negative outcomes until that was corrected.
 

 I have served as an RN Administrator of Patient Care Management in multiple acute medical centers.  Multiple departments came under my direction; Social Services being one of them.  Most SWs are awesome and so good at what they do; all were MSWs or LCSWs.  However, did come across a few who were kind of retired on the job and who did almost no adequate patient/family assessment.  Had to fix that very quickly.  That assessment is crucial to all else and can affect the very quality of life.

To my disappointment, in working with multiple HHAs with four relatives with dementia (mother, step-father, MIL and GMIL), I was gobsmacked at how often the SW assessment was so anemic.    Some HHAs are smaller; some poorly staffed, I found the lack of assessment stunning and it seemed focused only on providing a listing of referrals for community services or NHs.   I put together my own assessment of my LOs and their situations and their needs in a handout for such circumstances; at least the information to develop a plan was there.

 I also had a consulting business on the side  where I did QI oversight for Home Health, Hospice and other ancillary departments as well as for MD offices and hospital departments.   Have to say, Kaiser Permanente was a star; they had their own Home Health and Hospice and their MSWs and LCSWs were awesome and did really wonderfully detailed intake assessments and followup.  A joy to see. 

With Home Health, a number of visits will be assigned. Some get only that intital eval visit or the eval plus one visit and that is that.  Often not enough, but HH did not seem to find adequate reasons for additional visits. Sometimes that was accurate, other times it was not.   The patient's insurance and patient condition (and sometimes agency issues) seemed to drive that assignment. I never saw a 60 day certification in HH, but with Hospice, there are two initial 90 day certification periods based on necessity,  followed by unlimited 60 day cert periods if the patient continues to fit Hospice criteria.

 Since you have HH services, your DH would qualify for a bath aide two to three times a week if you wanted this service; wonder if this was offered to you. The bath aide would bathe, do grooming as well as doing light cleaning of the patient care area. Sometimes this is not necessary, other times it is welcomed.  It is sometimes happily surprising that Caregivers have mentioned that their LO who refused bathing from them would cooperate with the bath aide.  Never know what is going to happen. 

Had to learn nothing is perfect; there is only the best we can do under the circumstances with the challenges at hand . . . . and keep on going and going and going . . .

 Best of luck,

 J.