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OneBlueMoon Asked September 2021

Burned out! I don't know what to do in my case to have a long break without the guilt and worries! Anyone have a solution?

My mom(91) was diagnosed with dementia 7 years ago. 3 years she was independent but I still cooked and cared for her and for the last 4 years i cared for her every day in my home. Presently she is mostly highly delusional, dosen't know family members or even me anymore and has occasional accidents that refuses to wear diapers! She is mobile but wobbly and needs a cane or walker. Physically still in good shape but weak and had a recent good result on her blood work(thank god for a great nutrition and care since 4 years ago).
I have sever spine degeneration(5 disks) myself and already burned out after 4 years of home care by me alone 24/7! I have been having sever anxiety and feeling depressed bc of not having any breaks at all! My mom has Medicare and Medical(California Medicaid) and zero assets for any future facilities expenses. I stopped working to care for her and my poor husband has to work 3 jobs now! We both are so burned out that makes me extremely worried. No breaks or vacations for the last 4 years just work! If I show any exhaustion, she says are you trying to get rid of me? That breaks my heart and creates feelings of tremendous guilt. I don't know what to do presently to at least get one week away without any issues!
I also have to prepare myself for her placement(which I have no knowledge about) for the near future! The way things are going down fast, I'm very scared and anxious for planning for her future care, especially after I read all of other posts! Considering my own health too which is not good, I need to do something fast to put me at ease so my physical and mental conditions won't get any worse.
Trusting someone and financial aspect of the care are the main issues here and ofcourse I'm afraid she gets worse if I leave her somewhere or at home with someone I don't know. I have no family support or siblings to help. I even consider taking mom with us to a getaway. My husband dosen't want to go anywhere with her! I tell him it's "my emergency". I know it's a job within a vacation but what else can you do? Any helpful inputs if you've done that?
Has anyone had a situation like me with no breaks for so long? What did you do to help yourself not getting worse if couple of hours of breaks a week to run your errands is not helping anymore? How do you take a break/getaway in my case? Any suggestions?
Thank you.

mstrbill Sep 2021
Your mom needs to be placed in a nursing home, paid by Medical. You need a state social worker to help you, or you need to have the local hospital help you. I was at one point stressed out to the max as well, I called 911 and had my father transported to the hospital by ambulance. I told the police and the medics I couldn't get him to calm down (he kept wanting to leave) and I was afraid for his safety. Once at the hospital he was evaluated and held for a few days. I met with the case manager there, and she worked to find placement. You need to tell the social worker you are unable to safely take care of her anymore, they will find a nursing home for her.

Daughterof1930 Sep 2021
The truth is, your mother is going to get worse, it’s the natural course of life and there’s nothing in your power to stop it. You’ve exhausted yourself physically and emotionally being her constant caregiver and this most definitely isn’t fair to your husband. You need to make a change. Your mother will be cared for in memory care by a rotating staff of professional caregivers that get to go home and be refreshed after each shift. Her costs will be handled by Medicaid when there aren’t funds available. Your health and marriage need this change, I hope you’ll let us know you’ve done what’s best for you
OneBlueMoon Sep 2021
Uunfortunately there's no assets for her facility placement so then the Medicade to pick it up after. That's why she was qualified for medicaid long time ago. In this situation what's my options?

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Geaton777 Sep 2021
I'm so sorry that you are struggling with this conundrum. The honest answer is you will need to make a decision and neither one will make you "feel" good.

What are your options?

- do nothing/change nothing... and have your own health (and back problems) continue to worsen. Then what? Assume your hubs and daughter into caregiving for 2 people?

- decide to pay for in-home caregivers. Eventually this will be unsustainable and just robs you/your husband of your future. FYI there is a severe labor shortage right now and the hourly rates (even for private hires) is going up. You will spend time vetting people, managing schedules, hiring/firing, and training them. With luck and time you may find "the right person" but will need a plan for when this person gets sick or goes on vacation.

- start researching facilities that accept Medical. There are good ones. Visit them in person and get first-hand input from neighbors on Nextdoor.com.

Your mother is 91. You write as if she's never doing to decline. She will -- in spite of any orbiting around her you do 24/7. My MIL (88, LTC) is on Medicaid and is in a wonderful facility -- even has a private room! She is actually thriving because, other than immobility, she has no other health issues and she gets great care. These good places do exist. I recommend you seek out faith-based facilities that have been around for a long time. They can be very well managed and see their care as a mission, not as a profit center (because they are non-profit and often supported by a larger denominational entity, to which you do not need to belong). No place will be perfect: my own 99-yr old aunt with adv dementia has fallen twice in her own home breaking bones, and another time she fell and did a face-plant even though my cousin was right next to her. She gets excellent care by dedicated family members plus her 102-yr sister. But once she requires 24/7 care or has a profound medial/health incident I realize things will need to change. As her PoA I will need to make some decisions that I will make me sad.

Finally, your marriage is the priority, not your mother. You have both done yeoman's work of caring for her. For some problems there are just no perfect solutions. May you gain clarity and peace in your heart. Wishing you a successful back surgery!
OneBlueMoon Sep 2021
Thank you for your advice. I know she's going down gradually I'm not denying that! My mom also has a language barrier which is another concern to find the right help or a facility. Most of her native caretakers I talked to are uneducated about this disease and don't know how to handle it. One was telling me "I just yell at the patient until they shut up"! That's very sad that there are individuals like that out there nevertheless as a caretaker!
I had to put an hold on my back surgery for now due to the demand in my life.
SnoopyLove Sep 2021
I think you are well past the point of breaks or respite. It is time for placement in a care facility.

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