Dealing with Frustration as only Caretaker

Mariez

 My DH was diagnosed officially June 2020 with Alzheimer's but had signs from a

CT back in 2017 and has been taking meds for it ever since. He is in the middle

stage and I'm full- time caregiver.  Has trouble getting out of bed and trouble

getting up from couch and now is confused how to sit down.  As a result,

 I've injured my neck, arms and now middle back helping him and am

half his weight.  He gets confused walking in home and just stops facing a

 wall or a table etc.  Uses a walker, has diabetes, COPD, and wears

Foley/Catheter for past two years since bladder not working plus

 other medical issues.  Can't afford highly skilled medical facility

 (which he needs because of these medical diagnoses). 

Also having difficulty eating ... not wanting to or confused how to. 

 This affects blood sugar levels which I have to adjust but have to

make educated guess on amount.  Sleeps all day ... 14+ hours and

 also dozes off while eating.  Had consultation with Hospice but

too early to stop meds and let nature take its course.  Don't know

how to handle my situation getting frustrated daily and don't have

resources for help with him.  Any suggestions would be most welcome.

LaurenB

Welcome and good morning MarieZ.  Your story sounds so familiar.  Dementia affects a persons language and their ability to understand your directions and the world around them.  I have to simplify my speech with my mom and add gestures ("sit down" and point)  Sometimes she needs a physical/tactile cue as well.

Have you consulted with an eldercare lawyer to see if you can separate your finances from your husband's so that he could qualify for medicaid (financial assistance) for placement in a nursing home?

I'd also get a physical therapy consult to have them educate you on how to properly use your body and your husband's when helping him to stand up etc... so that you don't continue to injure yourself.  Let the PT know that this is the purpose of your husband's sessions with PT if rehabilitation isn't an option for him.

Lauren

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Mariez

  thaThank you both for the advice.  

I've seen and spoken to some Elder Care attorneys  and started separating our assets but Medicare does a "look back" I think 5 years so may be moot.  It's very expensive and not sure will ever reach point will it will take effect.  I have some medical issues that may cause me to go first and am working on that to see what I need legally if that happens.  A trust has been suggested by some and others say not necessary.   He has a will from 2009 that I can't change since he's not capable of signing anymore.  But I will update mine since he is named the Executor and Agent. 

A physical therapist is a good suggestion for me to learn how to help him without further injuring myself.  I will look into that.  And, I will check local resources on aging. Thanks! 

M1

Hi Marie And welcome to the forum. Im kinda surprised hospice turned him down based on what you're describing. You could asK another agency reevaluate him, we've seen that before where one agency rejects but another accepts. Not much to lose by asking.

Mariez

Sorry I didn't explain.  Hospice didn't turn him down.  He was eligible but they were going to stop his meds for Diabetes, Cardio, Alzheimer's and COPD/sleep apnea.  I thought it was still too early to stop these.   But that was 6 months ago, and I did check local resources above re Home Care who suggested Hospice.  I will have him reevaluated.  Thank you!

CanyonGal

In my understanding, you qualify for hospice if the hospice doctor thinks you have 6 mo. Or less to live.

In my mom’s case, hospice covers medication related to her hospice diagnosis (dementia, kidney disease, cardiac) . The medication related to her other medical problems (asthma, anemia etcetera ) is covered by her insurance. She sees both her PCP and the hospice team. They didn’t stop any of her medications, in fact they added more.

I would try a different hospice company. That’s really bizarre that they would pull all medication. 

Jo C.

Hello Marie; I am sorry for what you are experiencing and can imagine that it is all even more difficult than you describe.

Each Hospice entity is different from the next - some are far more beneficent than others and also; some Hospice Intake nurses are more experienced than others.  You can contact a different Hospice to come out and assess your husband if you wish

Hospice will often recommend discontinuing those meds that are not necessary; however, my experience has been that insulin is continued as well as other medically necessary meds to continue comfort from conditions that would otherwise worsen and cause increase in uncomfortable symptoms or significantly lead to other problem issues that need to be controlled.  Meds not in that category and unlikely to cause downturn are often discontinued.  Also, in some situations, if Hospice recommends a med be discontinued, if it is not contributing to patient distress, family can request to continue the med depending on why and what is present.    Hospice also treats infections including pneumonia unless the person is actively and imminently dying.

Can you share the names of the meds they specifically state they would discontinue?  That may helpful with our understanding.

Hospice can also provide lifts and other devices which may be helpful as the need arises; this is done at no cost to the family.  Having PT and even OT come in to assess things and provide helpful information and teaching would be a good idea.  If ordered as a medical necessity for you by a physician, it may be covered by insurance; you can check on that.

A Certified Elder Law Attorney in full appointment should be able to assess your situation and advise how to position yourself so there is no five year look back period as you would not be hiding assets.   If we knew what state you are in, it would be helpful; we can then see the criteria for assets for Long Term Medicaid, (which is different from regular Medicaid.)  If assets are too high, then there will have to be some spend down, but the CELA may be able to assist with positioning you better.  We are not attorneys, so it is always best to seek the advice of valid professionals.

J.