New here, in some trouble

[CarolPetunia]

I don't know what I'm looking for here -- maybe just a place to write what I feel.  I'm 61, and I've had pretty severe depression and massive anxiety since childhood.  My whole life has been limited by my inability to cope with stresses that are normal to most people, and I'm on disability for memory and focus problems, as well as diabetes, mobility issues and several other infirmities.

And for the past seven years, I've been taking care of my mother, with whom I live.  She's 91 now and has dementia, but can mostly enjoy life with constant physical care and frequent reminders to help her stay oriented.  

But when she becomes really disoriented, she is so adamant... she cannot be reasoned with, and so I usually don't try -- but when she's determined to call a cab and go to the airport to go "back home," I have no choice but to stop her and explain gently where we are and what year it is and that the people she wants to go home to are no longer there.  I do this with all the love and patience I can muster, but it often leads to rage and threats and horrible accusations... it is becoming more than I can handle.  I often break down, and I sometimes get angry, which  is exactly what I don't want to do.  Everything is so hard, just trying to keep up with her needs and those of the cats and the house...ir's the hardest work I've ever done, and it's hitting me at the time in my life when I am weakest.  I've had to go into major debt to keep the house minimally functional, and we still desperately need some repairs.  And on top of it all, I still have to pay over $4500 on a car that won't run again without a new engine, and I have no money at all... so I've been walking everywhere for several months, and the ungodly heat of Texas in summer will soon make that impossible.

When I try to imagine the future, all I see is poverty, physical and emotional exhaustion, and a desperate effort to keep Mom safe and happy... and then eventually losing her, losing the house, and having only my tiny disability income to try to survive on.  And now Trump and his henchmen are plotting to eliminate that pittance, and my healthcare as well.

What do people do when they can't see how to go on?  Despite my many health problems, I've always managed to stay on the giving side, until these past several years -- I'm accustomed to being a resource for others. But now I feel so helpless.  It seems as if there must be an answer, some way to proceed that would keep us going, keep Mom well and happy, keep me functional enough to care for her properly...  but I don't have the experience or knowledge to figure out what to do.  I guess I'm hoping someone here has guidance for me.  Thank you for listening.

[e365319o]

Hi Carol,

My life before caregiving was as a Financing Consultant.  California had a state grant program that I got my father qualified for $5,000.  It was related to energy efficientcy.  Check with your social  worker on grants specifically for home improvements, and also check out senior, and disabled utility programs.  I was able to enroll Dad in three of these programs, that lowered gas, water, electricity, garbage, and our cable bills between 15% to 30%.  In a situation like your's, and I've been there, every dollar counts. 

I always say to anyone who asks, "Did you regret becoming a Caregiver to your Dad?"  Answer, "Never!  Our family wanted to give both our parents this last precious gift of dignity, compassion, and love.  I was blessed to be able to serve my folks, and our family."  As hard as it may seem now, never forget this fact.  Reach out to anyone for help, and don't lose faith.

Take care.

Ed O.

[CarolPetunia]

Thank you so much.  I do treasure my mom, and I'm so glad she's here -- I truly don't know what on earth I will do when she's not.  I don't mean to complain, I wouldn't change it for anything in the world!  It's just that it's so hard... as you clearly understand. I will pursue the things you suggest -- thank you for taking time.  ❤️

[carolinaliving]

Hi Carol, I am in a similar situation, although I don't have to deal with the hostile type of dementia yet ( fingers crossed) but I have health problems also and it is exhausting. I know that every state does not have this program but in my state there is a program that I intend to contact and it is for caregivers of people with dementia - called Project Care. You could look up your state on the internet and type dept of human services dementia caregiver and it should show you any program in your state. They give you a counselor who knows about dementia and repay you for respite services. This sounds more promising than anything at our local council on aging which is a disappointment.  Another thing that you may have in your area ( I don't ) is a PACE program, which has adult daycare and respite programs, and I'm sure they have counselors too.

This is really hard work, and it is even harder when you have health problems and limited income.

A lady in a caregiving support group that I belong to said she is so tired of hearing how she needs 'to take care of herself so that she can take care of others' - because it makes her feel that her only reason for living is to be a caregiver. It's really easy to get burned out. I was a shy kid and I dread dealing with service people and discussing payment, etc. I have had to do things that I never thought I would be able to do and it is stressful. I am also dealing with other family members who turned against me, so I have even less help than before.

Any time you want to email me, feel free to do so - it would be nice to hear from someone with so much in common. Hope these ideas on here will help you.

[CarolPetunia]

You're so kind to share what you've learned -- thank you so much.  I'm sorry I haven't come back here until today... I'm just overwhelmed and can't be relied upon at all.  I should indeed look into respite care... not sure whether my mom would accept it, though.  She's so intensely anxious and emotional.  But it's a great idea, and I will try.  Good luck to you!

[mimi0000]

I really don't know if  this will be any help but it is and idea you might consider.  There are many people who want to help people.  Consider going on GO FUND me, tell your story.  People may assist in paying car repairs,  or maybe more.   I know this is not a solution to your issues but maybe there could be some relief if you had some money.

Thoughts are with you.

[CarolPetunia]

Thank you for that idea -- I did try it, but I didn't have the heart to promote it, and one mention on Facebook didn't attract enough attention to do much good.  My own fault.  I just have trouble asking for help.  When I'm trudging to the grocery in the heat, barely able to breathe, I can't even stick out my thumb to ask for a ride.  I guess I'll have to work on that.  Thank you for your input!

[JaneCares]

Hi, Carol Petunia, I'm so glad you wrote.

I hear how discouraged you are. And yet it is clear that you are a survivor, and hardworking and generous to your mother. And yet it IS exhausting, all of it.

I have been a caregiver, and will be again; i've been a geriatric care manager who was hired by desperate families who were on their last collective nerves with their loved one, i've worked as a hospice social worker. And now i work as a therapist in a poor part of a rural county. Let me make a few suggestions, but please know that they are offered with respect and admiration. 

Give yourself a treat and check out this podcast of This American Life. It talks about a comedy couple who use improvisional humor with their demented mom. https://www.thisamericanlife.org/radio-archives/episode/532/transcript  

The whole idea is to go with the flow of the delusion/ the insistance/ the long ago memory that is now REALITY even though it is not. There is no point to saying that she is insisting on going to the place she already is, and that the people she wants to visit are dead. It is too upsetting and it won't stick anyway. Go with it. Hail a cab. Both of you get in it. Drive around the block, and with great relief in your voice tell your mom, We're HERE, we're finally home!  then go in and have a nice ice tea.

i worked with a wealthy woman in her 90s who lived in a palatial and gorgeous house, and she could not understand that it was her home. A real shame because she had staff of decades who were devoted to her. It was a torment for her and for her adult children. 

I am worried as you are, too, about the lack of money, and your sacrifice for your mother. Here are some ideas about how to address that. Go to eldercare.gov and type in your zip code; then call the agency and ask to meet with an intake social worker. You have a lot of questions about resources for your mother and for yourself as a disabled adult. Meet with the tax-payer supported agency people and milk them for all their worth. Are you eligible for help? For transportation help, utility assistance, paid respite care? Is a reverse mortgage an option? Are there state-funded home health aides that could give you a break? Ask every question you can think of. There is no such thing as a stupid question.

Exhausted as you are, is there any break you can get from your mom? Friends? Members of a faith community? Any nieces or nephews, anyone? Expand the caregiving circle somehow. Who? When? Get them in there.

Okay so i have thrown a lot out there. What do you think? What is the next right step?

Please write back. we are here.

jane

[DrBarryJJacobs]

Dear CarolPetunia,

    I think JaneCares has already given you some excellent ideas. On a strictly pragmatic level, I second reaching out to your local Area Agency on Aging. You are under-resourced. Your AAA care manager can guide you.

     I also appreciate Jane Cares' appreciative tone. You are doing great work! That's true even if your mother now lacks the judgment (or perhaps always lacked the judgment) to tell you so. She is extremely fortunate to have you as a daughter. Hold on to that thought, especially when she's yelling at you.

     I would also suggest having your mother medically evaluated by a geropsychiatrist or savvy neurologist. There are medications (with side-effects) that will decrease her delusions and make her somewhat easier to manage. They are worth considering--not just for your sake but her sake. It can't be pleasaont for her to be confused and agitated at times. I am of the belief that atypical antipsychotics can be a wonderful balm for patients and save family caregivers' sanity at the same time.

     Finally, I want to reiterate that you are not alone. You are part of a burgeoning community of fellow Good Samaritans who are trying to figure this out, just like you are. Your AAA can hook you up with a local support group.  This is a wonderful online support group. Hearing others' stories and emotions will normalize your own. Especially because of your history of depression, you need regular TLC and others' viewpoints about the silver linings of these dark days.--Barry Jacobs, co-author of AARP Meditations for Caregivers

[CarolPetunia]

Thank you for writing -- yes, I'm realizing that Mom probably needs more medical help, and I thank you for the names of the specialties to look into.  If there's something that could ease her mind without sedating her, it would be such a blessing.  Thank you!

[JaneCares]

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@CarolPetunia wrote:

Thank you for writing -- yes, I'm realizing that Mom probably needs more medical help, and I thank you for the names of the specialties to look into.  If there's something that could ease her mind without sedating her, it would be such a blessing.  Thank you!

---

Hey Carol,

So glad to see you've read the collective wisdom. No need to apologize for anything. You are indeed overwhelmed. Since we've thrown so much advice at you, perhaps start with the area agency on aging (eldercare.gov and enter your zip). That person can tell you if there is a respite program or not. I used to work in montgomery county maryland and the money started flowing in july and then stopped when it was run out, and that could be october... 

your mother may be emotional and anxious, but please know that you love her and your mother will need to make some adaptations. She might find she loves the changes, or not. but she has to make them. A friend of mine's mom ended up loving her once a week aide: they sang hymns together for hours. A wee young lady from Nigeria, and an old lady from Missouri. Humans are endlessly adaptable even though they might kick and scream...

we're here. keep writing. 

jane