I have been caring for my mom for seven years and the last two years she can not be left alone. I am single have cut my work hours to less than 20 per week am having trouble finding quality care for my mom except for the few hours I get to leave my home....I hate my life because I no longer have a life, family have said I need a support group and since I cannot leave to join a group I am here. We have had loss in the past year with my brother passing unexpectedly.....Oh how I wish it would have been me.....I pray daily asking for help from above.....my prayers have yet to be answered....I am boarding on financial ruin from lack of work and paying out as much as I make just to care for her....I find I have no more patience for my mom because I am so unhappy in my own life....I will not put her in a nursing home because we don't have enough money to get her proper care so she is living with me. She has advanced stage Parkinson's, Dementia and the newest development is that she has panic attacks which are horrible. These are the worse, she tightens up all her muscles than complains about the pain from the tightened muscles.....I have had her to pain doctors, psychologists, primary care and of course the Parkinson doctor....nothing seems to help....All I know is I need some help and advise...
Thank you in advance for reading and helping.....
Feeling hopeless
My mother is 96. My MIL is 92. Both are in nice facilities. They are safe, clean, dressed, fed and entertained. My husband and I both work full time and we need our own health insurance and soc. sec. benefits. So, bringing them home with us, was never an option.
In the last decade or so I discovered that a Ford facility on 8 Mile in Northville was pioneering integration of alternative medicines. I then learned that another Ford facility in W. Bloomfield was also taking steps along this route.
If they are, I'm thinking that the Dearborn facility may also have some more advanced support for patients and their caregivers, especially in the field of support groups and or respite. I honestly don't know what they have, but it's worth a call.
Botsford Hospital on 8 and Grand River used to also have some patient oriented activities, but I don't know if they still do. I was thinking of a support group that you might be able to attend if you can get someone to stay with your mother.
Someone in the medical field with whom I spoke in the last month or so mentioned hospitals that have their own DME supply units; sometimes such hospitals with integrated services have other units that provide respite care. I have brochures from Ford collected at an Area Agency on Aging expo but I don't know where they are right now.
There's a Gilda's Club in Royal Oak (248- 577-0800). I don't think they have any respite services that would help you since RO is quite a hike from Dearborn, but they might have some ideas or suggestions on what's available in Dearborn.
I'm not at all familiar with the Senior Center in Dearborn, but they may also have lists of competent caregivers. I do know, though, that it's not easy to interview and select someone in whom you have confidence just based on an interview.
I'm wondering if either Ford or Gilda's Club have social workers that could address the financial situation and offer suggestions.
Get involved in local "caregiver's group" -- MAKE THE TIME!!! go at least to one visit and then see if it's possible to set up a webinar or a way that you can participate in the meetings and conversations remotely if you have to. THey will have many helpful and supportive insights. (church, hospital, hospice -- all have caregiver group meetings)
Get outside help -- even if only a few hours a day or a couple days a week -- this is an investment in mom and your own mental and physical health. Yes, it costs $20/hr -- but it is a great investment. If mom is able - have the aid take mom out for a drive, for lunch, dinner, etc.
Call your local center for aging and ask them for resources to help you sort through financial assistance to get skilled care in your home
PLEASE consider placing mom in skilled care (sometimes that is much more economical) and you can turn over the day to day caregiving to skilled care and you can then be the loving daughter you want to be spending true quality time with mom.
People don't maintain relationships with others during the caregiving years for a number of reasons, not the least of which is that the whole concept of caring for an elderly parent isn't a particularly exciting topic of discussion. And if friends or others haven't done it, they'll never completely understand how demanding it can be.
It's not as if caregivers excitedly meet their friends to tell about their grueling days. It's not like sharing the excitement of a new job or other positive experience. Not all people want to even hear the details of caregiving. It makes them too uncomfortable.
At times it feels as if you're caught in a whirlpool, being sucked down, and you're unable to free yourself. At times the issues can be so overwhelming that it's as if all the neurons in your brain are firing simultaneously and you can't think clearly. And other times it's just complete, sheer, mental and physical exhaustion.
Even if someone stood in front of a caregiver and offered to help, the caregiver might be so numb that the offer doesn't even register.
There's also a phenomenon that develops, and I don't believe it's co-dependency; it's a feeling of overwhelming obligation and anxiety of what might happen if the caregiver isn't giving as much as he or she can. If something does happen, the caregiver frequently blames herself, even if the event wasn't anything she could prevent.
I consider myself to be a feisty, tough old woman when I need to be, but there are times when I can't even think clearly, or when the anxiety is so much I can't sleep. And if I take days off to play in my garden, I feel guilty because there's so much that my father needs to have done at his house. Where do I draw the line? Where does any caregiver draw that line?
I can't really even begin to describe the subordination of individual rights and goals as well as the mental fatigue that often accompanies caregiving. I sense that Beck is in this position.
You wrote:
"It sounds like you are denying your mother more qualified care that she needs."
I'm sure you didn't mean it as it was written and it wasn't intended to be cruel or critical. But it did sound like that. Beck is overwhelmed, as are others here, including those of us who post often. She's probably denying herself just as much as any unintentional denial of her mother's needs.
"I wonder if what you are doing is living in your mothers house, using your mothers income and that your business is more a hobby than a business at this point."
Again, I understand that you're speculating, and perhaps you're right and I'm wrong. But I did think this supposition was inappropriate.
Have you ever run your own business? If not, do you have any idea how difficult it is, to handle all the product or service R & D, the marketing, the delivery of services or products, the legal and financial aspects?
Beck wrote that she went from a $50K income to about $15K. That's a significant drop; even if she did have a "hobby" at a $50K level, it was a well planned and orchestrated one. And from what I read, it was her only source of income.
If there's evidence that your suppositions are accurate, I will most certainly apologize for my own misinterpretations. It is not my intent to criticize you or provoke a conflict It's rather to point out that there are so many aspects to Beck's position that aren't possible for any of us not in that situation to completely understand, and it's tenuous to make conclusive judgments.
I hope I haven't offended you; that was not my intent.
97yearoldmom, you were cruel towards the OP in my opinion. You really think that people who end up being the sole caregiver, become that way because no one wants to bother because they don't agree with the caregiver? PLEASE, this happens because it usually falls on one adult child(usually a female and single) and they get no help because no one offers or even if you plead comes forward to help.
You suggest she go to therapy? When would she have time. She gets a break on Sunday by her brother and SIL(as she said whoopty do) to go to the store to get supplies, when you do you suggest she go to therapy?
OP, it really does sound like this is too much for you, who owns the home you're in, you or mom? I ask for Medicaid reasons, you need to look into that.
As one poster said "what happens to mom if something happens to you?", this is very frequent, the caregiver goes before the parent, due to ill health caused by the stress of caregiving.
You need help. I understand you wanting to keep mom at home, but this is too much for you.