Exhausted caregiver looking for suggestions and help

SweeT97

My grandmother has lewy body dementia which also alters her vision and it seems like it is rapidly progressing. I have to repeatedly remind my grandmother to eat and take her meds while she chases "people" around the house, as it is mentally draining for both of us. She refuses to eat and shower, she will say she did but I know that she has not. I have to fix the food and place it on the table in front of her , even using the fork to pick up the food is a challenging task for her. I have been reaching out to her physicians,  the state, area on agency and care coordinators, she did not qualify for state caregiver help, or hospice care.  Everyone tells us that the option is to self pay for home health $22/hr (min 4 hrs per day) which amounts to about $1000 a week- too expensive.  

  I am 23 and a recent graduate trying to start my professional career and even try to maintain the few friendships that I have left but I cannot confidently start a job until I can get someone to help with my grandmother. My grandmother, grandfather and myself live together, although my grandfather is legaly blind , my grandmother needs the most help. My mother is a only child, getting reading to start chemotherapy of her own and I am a only child therefore I do not have that much family to help right now.

I am not sure what else I can do to get them help, it seems like self pay is the only option and even if we did that it would no be able to continue for long. Does anyone have any suggestions or in the same boat ?

M1

Hi SweeT. What a difficult position. There is another option, get them qualified for Medicaid so that they can go to a facility that has assisted living and memory care. You can start looking at places in your area that you might consider.  Can your mother at least discuss this with you? It's going to matter who has power of attorney for them, if this has not been taken care of it needs to be done. You can call the Alzheimer's hotline for more advice1-800-272-3900, ask to speak to a care consultant. This does not all need to be on your young shoulders. I'm glad you reached out and good luck.

Cynbar

SweeT, you sound like a wonderful and caring person, your family is so lucky to have you! But this is not a sustainable situation, unless you are willing to sacrifice yourself for several years to come. And you should not have to do that, this is such an important time in your life when you should be building your career and relationships and eventually a family of your own. None of that will happen if you are caring for your grandparents 24/7---- the price here is too high. I am so sorry to hear about your mother's illness, but hopefully she can at least help you with planning. They need placement, and this is not a bad thing if you research and find the right places. Sounds like your grandmother needs memory care, and probably assisted living for your grandfather. Even if hospice comes in, they will only provide intermittent care, not enough for you to resume your life. Look at their finances first, and consult a certified elder law attorney if you haven't done that. They will have to spend their assets and then apply for Medicaid, the attorney can help you unravel all that. Then, start researching local facilities. I'm betting they will do just fine. We see posters here who are killing themselves to keep their loved ones out of facilities. When it finally has to happen, they are amazed at how well their loved ones adjust.

KathyOnOBX

Hi SweeT.  I saw on another post that your grandmother hallucinates. I'm sorry that happens as I know it's difficult to deal with. Has she had a physical or medical appointment recently?  I ask because my m-i-l used to hallucinate when she got urinary bladder infections. She got them frequently. The hallucinations were in addition to her other dementia symptoms. I found out it's very common for older people to get bladder infections and to hallucinate as a result. (I understand hallucinations are part of the dementia but wanted to mention the bladder infection problem.)

I don't think I've ever known anyone who didn't try harder than anything to keep their elderly parents or grandparents at home at all costs for as long as they possibly could. Your determination is admirable. BUT you are exhausted, as you said! A time comes for most of us when we have to be moved to somewhere that can take the best possible around-the-clock care of us. One person just isn't able, no matter how super they are, to take care of one ill person all the time, much less an ill person and a blind person. Heck, two people really have a hard time doing that! Since your grandmother is to the point of not wanting to eat, you have to do something.

It's time. As the other fellow said, you need the advice of an attorney on this. If your grandparents have "some money" it's more difficult to get them placed as it's rarely enough money to fund assisted living or a memory care center, no matter how much it is. If they own their home, that complicates it, too. Please seek the advice of an elder care attorney and don't put it off.

In the meantime, you may want to look into someone coming in for a day or two to give you a break. With your mom ill with cancer (I'm so sorry) on top of your caregiving, you clearly really need a break. You need to find a "respite care worker". 

Doing these things is an act of love. You will be doing what is the very best thing for them.  I wish you all well.

Kathy