any options in MA, Alzheimer's & diabetes?

gradomomhama

Hello, I'm new, but I'm glad I found this site. I have been very stressed out and have gotten too stuck too even move forward with any plans at this point.

My mother has both Alzheimer's and diabetes. She was always somewhat dissociative, so even though she was diagnosed with early Alzheimer's a couple of years ago my siblings and I thought it still wasn't that bad since she has always been easily confused and forgetful. What tipped us off to things changing was Mom ending up in the hospital for over a week, and hospital staff telling my sister and I that they couldn't release Mom from the hospital unless it was into someone else's care. She can't remember to take any medications any more. She had always taken her meds throughout her life. She does actually need her meds in some cases to regulate vital organs and blood sugar and to keep her alive. She also at this point can't remember if she has eaten or not, or if she ate a snack but not a meal. So she really needs a lot more care than we had realized.

I live in Washington state, and my mother and some of my siblings are in Massachusetts. I'm the eldest of the siblings and a clinical social worker with medical advocate experience, so my siblings want me to spearhead Mom's care, which I've generally been willing to do.

After a very aggravating process I was able to get her into the PACE program in Massachusetts, which is supposed to be the Program for All Inclusive Care for the Elderly. Mom has been living in her own apartment in a senior apartment complex, which does not have any medical staff for the building other than sometimes 1 social worker. PACE wants Mom to get overnight care and daily insulin shots by some means other than their program because they say they can't provide those things. My gf works for PACE in Washington and is shocked at that, since PACE here works with adult family homes, memory care, assisted living, and nursing homes, and Washington has a pool of people trained to be caregivers paid by Medicaid. I've spoken to many staff and 2 supervisors at PACE in MA and they said they really don't have that there. Also, apparently in MA there are no adult family homes, and assisted living and memory care units can't give insulin shots. I asked my sister, who works in healthcare in MA, what happens to other people with both Alzheimer's and diabetes? She said they get left to die, and it happens all the time.

I've been considering moving Mom to Washington, but no one is thrilled with that idea (other than my siblings, who are also tired of the crisis of the week with PACE in Massachusetts). Mom has lived her whole life in Massachusetts, and moving her here could be very expensive, difficult, and stressful for everyone involved. It could also strain my marriage if Mom moves into my house (my spouse is nonbinary and Mom 100% guaranteed WILL misgender my spouse all the time, out of forgetting and not out of malice, but still our home is my spouse's safe space), and it could strain my relationship with my Mom if she throws fits, which she has been prone to. I'm disabled myself and already supporting my spouse, but I am also willing to advocate in systems and it sounds like MA just doesn't have systems that could provide the care she needs. I'm willing to get her into an adult family home here since we do have such things, but I don't know when there will be an opening in one that will take her healthcare. I'd like to get her into PACE here but I live in a rural area so she'd have to move to a city to get into PACE, though I have a list already of adult family homes in my county (in the cities here) that work with PACE. Mom is very much against the idea of an adult family home, but she also keeps thinking I'm talking about nursing homes and she can't remember the difference, which makes sense since she has no frame of reference for an adult family home (she never lived with roommates except when in a shelter).

I have 2 sets of questions for this group.

1. Does anyone know of any resources that could possibly help Mom stay in Massachusetts? I'd love to get her living somewhere safe with someone there overnight in case she falls or needs anything, and where someone can help her get meals and meds, but where she can also go out and do fun stuff that she is still capable of such as dancing or theater as long as someone goes with her. Also, I've already tried the nursing homes. It looks like most of the ones that would take her healthcare are terrible and the one that isn't has about a 2 year wait (I applied to get her on their waitlist but she still needs care now).

2. If moving her to Washington really does look like the best option, does anyone have advice for making it easier? I want her to keep things that are important to her, especially if it helps her memory, but we can't fit most of her furniture into my house or into a single room at an adult family home. 

I would also appreciate advice from trans* people on navigating moving Mom in here or finding compassionate and realistic ways to move her somewhere else so that Mom has adequate care AND my spouse isn't getting constantly misgendered in their own home. My spouse is also frustratingly passive sometimes and hasn't been able to clearly state how they would handle that and if it would roll off or really hurt them, which leads me to believe it likely wouldn't just roll off. They have expressed concern that Mom may keep forgetting who they are, since she already does that now but that's partially from not having seen my spouse for years.

Thank you very much.

M1

Welcome to the forum.  Very complicated scenario.  I assume the PACE program is Medicaid-based?  Very hard to switch from state to state, you probably need to investigate whether that's possible before you consider moving her.  I wonder if hiring a professional care manager in Massachusetts would help you since you are so far away.

gradomomhama

Is a "professional care manager" an actual job or a wish? I've been searching for months and can't find anyone who can help us and doesn't just try to redirect us to agencies we tried already (VNA, Council on Aging, or PACE). If it is an actual job, do you know how to find one, and what do they cost? Are they accessible to disabled people on Medicaid?

Yes we are working with Medicaid. I've already called and I know how to do the transfer but it also means risking her not having Medicaid for a month while we wait for the new Medicaid to kick in but it needs her to be physically in Washington for that.

I was really hoping Massachusetts might have anyone who can actually help and not just hear "Medicaid" and go oh it's a poor person leave them to die. This is barbarian.

Then again, that is part of _why_ I moved across the continent. I am also on Medicaid.

M1

It's a real job..try googling Geriatric Care Managers in Massachusetts, there were a lot of responses...it would at least give you a place to start looking.  No idea what the cost might be.

dayn2nite2

I can confirm that PACE in Michigan is actually worse than Massachusetts, so you must be living in a PACE paradise.

jmlarue

Not sure if this link would be of help:

https://www.mass.gov/service-details/home-and-community-based-waivers

Recommend you be very succinct in what you're looking for for aid. Explain where your mother now resides and they are asking for her to receive additional "in home" help with her medications and daily insulin injections. I'm assuming she is insulin dependent? If so, it will be difficult to get any kind of visiting nurse to give an injection more than once per day. That can be an option with the help of her doctor, who could transition her to receiving a single shot of long-acting insulin daily - something like Lantus. Multiple shots and glucose checks to care for an insulin dependent diabetic in an assisted living center is near impossible to find, regardless what state you live in.

Sad to say, many family members come to realize that finding the ideal placement for their LO becomes an exercise in "lowering expectations" - especially when special circumstances like diabetes or behavioral issues need accommodation. Best advice - leave it to the discharge planner at the hospital to figure out the best place her her to transfer to since moving her out of state is the least possible of all. You don't need to regard this move as permanent. What it will do is see to her immediate needs and buy you and your siblings time to explore other options on a less critical timeline.

If I might be so bold - do not consider moving her into your own home. There are far too many obstacles to a peaceful existence for every one of you. Dementia is progressive. There will come a time when your mom won't recognize you or your siblings, let alone you spouse or what gender pronouns are preferred.

JJAz

Where is the hospital social worker in this situation?  It is their job to find Mom a safe place that meets her medical needs before discharge.  If they think you are handling the problem, they will let you.  Tell them that you are out of options and no family members will accept her.  Then the social worker will get in gear.

harshedbuzz

A couple of thoughts-

1. Discharge should have been handled by the social worker from the hospital as JJazz suggested. I suspect your family may have appeared vague around what they wanted going forward which led the SW to stand-back rather than step on toes as many families will want to make their own arrangements. 

2. Your mom's care decisions ultimately fall on the person she named as her POA. If she doesn't have a POA, you need to get that ticked off your to-do list yesterday. Many CELAs will come to the home or hospital to facilitate this if necessary. If your mom is deemed too impaired to understand the concept, someone will need to obtain guardianship.

3. Ideally, the POA should be local to the PWD. I can appreciate that you bring professional expertise to the party, but at the end of the day the POA is called to meet the PWD at the local ER quite often and that's easiest done if they're local.

4. Moving mom to WA can make sense. Most people who've been down this road will share that friends and even family drop off in terms of contact with the PWD as the disease progresses and interaction becomes more difficult. It's also true that as the disease progresses many PWD become disoriented to time and place and do not even recognize their own homes meaning I wouldn't overly inconvenience myself as a caregiver to keep a PWD "at home" if somewhere else made more sense. 

5. A move to WA could mean moving to a facility instead of your own home. If you become primary caregiver/POA, having your home as a sanctuary away from the task of caregiving is better than turning your home into a SNF-for-one allowing you and your spouse no respite. FWIW, PWD often struggle with processing gender even among cis-people so your fears would likely become reality.

6. Unfortunately, insulin dependence is going to inform your options for care. State licensing of care facilities and who can dispense the injections will limit where she can be placed or how you can hire to administer them. For most PWD, a MCF with dementia trained staff, design and programming is the best option. But these places generally will not manage T1D for a resident. Dad's MCF didn't even have an RN in the building- they had an LPN and aides. In my state, a person who needs insulin would need to go to a SNF or hire an RN to come to the house/facility to administer and good luck finding one in the current pandemic hiring crunch. 

7. Adult care homes aren't really a thing where I live. I think my grandmother was in one for a few months 35 years ago. It reminded me of an unlicensed day care being run out of someone's house-- a very random group of residents who were kind of left on their own when not actively being assisted. And also not secure-- a PWD could elope easily.

To that end, I have a friend in OR whose adult son lives in an Adult Family Home-- he has high functioning autism, OCD and T1D which he is not emotionally able to manage. The home where he lives has a mix of mostly middle-aged adults with mental health issues being overseen by the RN who owns and runs the home. Care is excellent, but interaction only happens the resident is being actively attended to-- there is no social programming or activities. The son works and sees friends, so it's an OK place for growing his adulting skills for now.

I am truly sorry for the situation in which you find yourself and hope your family can initiate a plan that works for you and your mom.

HB


ETA: I would stop talking to mom about placement options and/or a need to move. She likely has anosognosia and cannot see the need for to have help. The POA needs to decide on an option and make it happen. Most families create some sort of therapeutic fiblet to take some of the sting out of the move to this "lovely senior apartment/resort"-- the house needs to be tented for a termite infestation, the main sewer line is being replaced, the doctor wants you to go to rehab to get stronger, etc.

HollyBerry

Have you looked at Southern New Hampshire? My mom was in AL there, in Keene, and I swear they had T1D services as part of AL.  And, I could be wrong!

I moved my mom to WI and could give you some ideas we learned from the school of hard knocks. I'll post again later when I'm not on my phone.

tullyleague

Hello,

New here, but an a Bay State resident I wanted to let you know know that MA’s version of Medicaid, MassHealth, is among the best. 

My mother works at her town’s Council on Aging and would be better prepared to provide you with names with actual care provider. Their Council is very selective about organizations they keep on referral, for the very reason that, sadly, some promise the moon and give you a handful of cow dung (Old Soldiers Home, I’m looking at you.) 

And I’d be equally happy to post the Council’s list here if allowed? Their list is largely shared by the local COAs as living in a small rural area, everything is shared. 

Hopefully this may help.

Darina 

jfkoc

I know this to be a good resource;

https://www.thehearthstoneinstitute.org/

sophirolr

My friend has diabetes and Alzheimer's. She copes, but you can see how difficult it is for her...

aannaa

You and mom are very strong how you cope with all this.. My friend has diabetes and Alzheimer's. She copes, but you can see how difficult it is for her... I Buy Trulicity Online https://www.canpharm.com/products/trulicity for him, which helps him feel better because of diabetes. We spend a lot of time actively together and eat right. It makes us feel good

LisaLH

My father has Alzheimer's and is a insulin dependent diabetic. He is in memory care in Oklahoma. They are not allowed to give insulin shots so we have a home health care agency come in and give it to him. He is not on Medicaid but Medicare does pay for it. Don't know if this is any help, but just mentioning our situation.

SDianeL

Read the post on the Discussion forum it was near the top. Hospice provides palliative care and respite care as well as Hospice care. Check with Hospice in the area. In some states you can have both Medicare & Medicaid at the same time. If she is disabled, can't she get SSDI? You can in FL and in LA. Not sure about MA. I would talk to a case worker at the hospital. Found this online: "Can you get MassHealth if you are on SSDI?

If you get SSI, you will automatically get Medicaid (MassHealth). If you get SSDI, you will get Medicare, but not until you have been eligible for two years. You can also apply for MassHealth."