Riogan, I have no more to offer except my prayers and, an OMG, you are so strong. I don't know if I could have done all you have. I hope you are very proud of yourself, with your Mother and then your son. I don't know how to put on that "give a hug" but I would. There are a lot of very good suggestions here. I just wanted to say, good luck.
It's difficult for me to say exactly how you would go about it, I am in Canada (British Columbia) and I'm not sure which state you live in? Perhaps you could check with the nursing programs through colleges etc. and see if any of the students would like to exchange their services for a free place to live. Or perhaps you could put an ad in the paper for caregivers and when you are interviewing them see which ones would be in need of free accomodations (perhaps someone semi-retired). ALWAYS ask for references.
We connected due to a close family tie and I share 24/7 care with another live-in. We have, I think, a relatively unique situation, where family is supportive of our care and we are a unit when it comes to our caregiving: we are her advocates, the family trusts us (because we ARE trustworthy), and the financial situation is stable, with good insurance. We have it GOOD, compared with many on this site. We've both settled on relatively low wage/exchange of room and board, because it suits our individual situations. It works for us.
People like us *can* be found, though I'm with most of the people who warn others about trust and level/skill of caregiving. It's hard to find. There are, unfortunately, many who are just out for what they can take from the situation. So, screen well. Talk to everyone you know, including friends, relatives, doctors and nurses where your mom is cared for to find people. You never know what you'll stumble onto. If you can arrange for the live-in situation (re-use the garage, maybe?) you may find it easier than finding more people to arrange a time schedule for 3 or 4 individuals, for 2 to 3 shifts a day. We take full charge responsibility: all household chores, gardening, shopping, transport to doctors, daily care, physical and occupational therapy, as well as cognitive exercises to keep her as alert as possible. We are her coaches, her assistants, her roommates and friends. We keep it a little like a sorority house. We laugh ALL the time (both because it's therapeutic and it feels like home).
A couple of tips about bedsores ..
- overnight, one of the things you can find is a variable/alternating pressure air mattress. I've found them on the web ranging from $35 to $95; this reduces the need for constant turning. It's invaluable on the bed and really helps with the bedsore issue. Similar pads are available for chairs (tho I've found them harder to find .. the bending needed to accommodate a chair makes them harder to find/more expensive). Alternating her sitting position is just as important as overnight.
- Find incontinence supplies that have a really GOOD barrier (not all diapers/pads are equal to the challenge of a full bladder release .. if you can put your hand on a full, wetted surface and feel the wetness, you'll know it's not good enough). Control her intake of fluids to reduce overnight wetting (experiment and find out when is the last intake vs last wetting before going overnight).
- UTIs are notorious for further decline in her health. This is our #1 issue, made even more complicated by other conditions (like a prolapsed rectum that constantly leaks, making it nearly impossible to control exposure to the urethra from fecal waste). There are lots of tips and hints about controlling these, like higher doses of Vitamin C, Cranberry (juice, concentrated tablets), Probiotics, d-Mannose (if the UTIs are recurrent with strains of e-coli), plenty of fluids (ours is restricted due to a congestive heart condition), keeping sugar intake to its lowest possible (UTIs *feed* on sugars .. and remember that starches convert to sugar).
My son is communicative (sometimes too much). As for the functional part, we don't know if he will ever be able to live on his own. We work with the state Regional Center for services that hopefully will get him to that point. Your suggestion is a good one. I will have to see how we could manage this as we have a very small home. Again part of the problem because of the intrusion that my son feels into his space. If we could do this, how would I go about finding someone and checking them out to make sure they are honest and a trustworthy person to have in our home?
oh my gosh rlongan.. you certainly do have your hands full and thank you for explaining your situation in more detail. Is your autistic son functioning and will he be able to live on his own etc.? I'm wondering if you could pay to have someone care for your mum during the day and then have another person look after your mum from evening until morning in exchange for a free place to live? That way you would not be having to pay out cash for 24 hr. care just for 12 hrs. Would this work?
Thank you all for your suggestions. However, I think I need to explain our situation a bit more. I have taken care of my Mom for over 12 years now. Initially, it was just going a couple of times a day to get her meals and give her baths, etc. This was not including the five major surgeries she had at which point I would bring her to my home and care for her for sometimes up to six months before she was ready to return to her home. These surgeries included Spinal Stenosis, and three bowel obstruction surgeries one requiring a colostomy bag for five months before they could rejoin. I had full care of her during these times. The last surgery just about did her in. She had multiple bed sores from her month long hospital stay and was no longer mobile. That was in June of 2010. I brought her home. She was able to mobilize again within one month. Although minimal mobility, I had her exercising and toileting. After all of her wounds were healed, I moved her into an Assisted Living. She was happy there for one year. I was finally getting a break although I still went to see her every day. Then in Feburary of 2012, she developed a urinary tract infection following a hospital stay for bronchitis. It wasn't caught early enough as she was still weak from the bronchitis so some of the signs were missed. The doctor didn't give her two days to live. However, she fooled them all and by the grace of God pulled through. I brought her home again with the intent on nursing her back to health. Unfortunately, she was no longer able to stand or walk. We went through home physical thereapy again with no progress so they stopped. We then went through outpatient physical therapy to no avail. It became apparent to me that I could no longer care for her at this level. I must also add that my husband and I own a business that requires me to be there. Although my husband has always done his best to support me whenever my Mom has needed. We did have a different financial situation during several of the previous times I cared for my mother and I was, therefore, able to be home without the same hardship that now occurs. Also, I have an autistic 24 year old son that does handle these changes in the household well. He sometimes becomes physical when he is agitated by the changes so it makes for a very stressful situation for everyone. That being said, I also could no longer lift her and do the hard transfers. During the 2010 through 2011 eight month period I took care of her, I developed arthrities in my left him from initially doing the hard transfers and then continued assist up and down. To further complicate issues, since she developed the bronchitis which was December 2011, she has been in the hospital five times with repeat UTI's (all different strains), another trip for an allergic reaction to medication, and this one last month for pneumonia. I had to move her into a Board & Care in April feeling it would be more one on one care. However, despite my being over there a couple of times a day and trying to oversee her care, it is not working out. The urologist has said to avoid her UTI's her diaper must be changed as soon as is possible. We talked about an in dwelling catheter but he felt she was at too great a risk for complications from that. As a result, she needs round the clock care. She must be turned every two hours when sleeping or she will develop bed sores (she already has one that has formed on her cocyx since being placed in the Board & Care). That is why I am not able to care for her at night. I tried. Having to get up every two hours left me useless the next day. I could do it for short term but not the long haul. I am desperate to find a way to take care of my Mother but am at a loss as to how to bring her back under my supervision without it costing an arm & leg and finding the right people. I don't want her left in a bed all day which was another reason I put her in the Board & Care. They transfer her to her wheelchair for meals and she sits in her recliner to watch some TV. But there are other problems and she is miserable. I have checked out other Board & Cares but many of them don't want to provide the night care she requires. What can I do?
You might try local Houses of Worship, that is where I got one companion for my Mom. Another person I found was someone who was out of work or a stay at home Mom during school hours. For companion only services, $12-17/hour in the northeast. Good luck
I researched this 3 years ago and again last year for my dad. I live in a building where many families hire live in nannies, I tapped into that network. I asked everyone I knew, I had a lot of leads for good people. You have to know what the going rate is for what you are asking. If you underpay your caregiver will move on when they get a better offer.
The going rate for live in care (children or adult) in Miami was about $300 per week, you also need to provide room and board and should expect they may want to stay over on their day off if they do not have other family or friends. They accept a lower salary because they get to live in a neighborhood that is better than a minimum rate job would otherwise allow, typically. Some of the folks who do this are extremely kind and good and passionate for there job. It is a tough low pay job, so most of these folks have limited options, low education, limited English, etc,. Try a church in a lower income area, they may know of someone who is looking for "placement". Typically they are ladies who either do not have, or have already raised, their children. This typically included light housekeeping and cooking.
This however assumes the patient does not need care actively all night long, an occasional bad night is ok, but if true 24 hour care is needed, you need people who rotate actively on shift. Agencies are 17 to 22 per hour. There are 168 hours in a week, so it adds up fast. One "catch" to be aware of some agencies do not permit caregivers (these are not nurse professionals) to dispense meds.
Private individuals can be about 10 to 15 per hour. Like any service provider, the quality has to do with the individual, not the rate, but people who are great are always in demand and have higher rates. Private individuals are less expensive than agencies, they may also not be formally trained and have no backup. Be ready to train and supervise until you feel comfortable. Delay delegating complicated tasks such as loading the weekly pillbox. It is a riskier approach, I personally found a Godsend.
Hope this helps. My research s a little dated, but provides a range.
If your mum is living in your home why do you need 24hr care? Why not 12 hr care from 7am to 7pm? Or 15hrs .. from 7am to 10pm. Could you not care for your mum from 10pm to 7 am ?
Not sure how much help you might need or how much skill the caregivers should have. However, if you are looking for just minor help such as someone to be there or help with small things like meds and meals, I think you might be able to do something like check with your church and places such as the VNA or a senior center or county/state senior agency and ask if they know of anyone who might be interested in make a little money by doing this. For example, I am starting next week the lady who cleans my Mother's house and can use the money is going to come in 2 hours a day, 3 days a week to give me a break. You might be able to find a couple people who want to do only 4 hours a day, but then you just need to find more of them. This might be easier to do in a small town than a large city. If you go this route, I'd suggest you also set up some type of in-home camera system to record what is going on until you trust people and make sure all valuables are locked up. Most agencies bond their workers I would think, but I think I'd still do that. Also, in the beginning, pop in unexpected to see what is going on. In this economy, a lot of people could use a little extra money. But I think I'd start at the church first, hopefully those people should be honest, but one never knows. Good luck in finding some help.
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We connected due to a close family tie and I share 24/7 care with another live-in. We have, I think, a relatively unique situation, where family is supportive of our care and we are a unit when it comes to our caregiving: we are her advocates, the family trusts us (because we ARE trustworthy), and the financial situation is stable, with good insurance. We have it GOOD, compared with many on this site. We've both settled on relatively low wage/exchange of room and board, because it suits our individual situations. It works for us.
People like us *can* be found, though I'm with most of the people who warn others about trust and level/skill of caregiving. It's hard to find. There are, unfortunately, many who are just out for what they can take from the situation. So, screen well. Talk to everyone you know, including friends, relatives, doctors and nurses where your mom is cared for to find people. You never know what you'll stumble onto. If you can arrange for the live-in situation (re-use the garage, maybe?) you may find it easier than finding more people to arrange a time schedule for 3 or 4 individuals, for 2 to 3 shifts a day. We take full charge responsibility: all household chores, gardening, shopping, transport to doctors, daily care, physical and occupational therapy, as well as cognitive exercises to keep her as alert as possible. We are her coaches, her assistants, her roommates and friends. We keep it a little like a sorority house. We laugh ALL the time (both because it's therapeutic and it feels like home).
A couple of tips about bedsores ..
- overnight, one of the things you can find is a variable/alternating pressure air mattress. I've found them on the web ranging from $35 to $95; this reduces the need for constant turning. It's invaluable on the bed and really helps with the bedsore issue. Similar pads are available for chairs (tho I've found them harder to find .. the bending needed to accommodate a chair makes them harder to find/more expensive). Alternating her sitting position is just as important as overnight.
- Find incontinence supplies that have a really GOOD barrier (not all diapers/pads are equal to the challenge of a full bladder release .. if you can put your hand on a full, wetted surface and feel the wetness, you'll know it's not good enough). Control her intake of fluids to reduce overnight wetting (experiment and find out when is the last intake vs last wetting before going overnight).
- UTIs are notorious for further decline in her health. This is our #1 issue, made even more complicated by other conditions (like a prolapsed rectum that constantly leaks, making it nearly impossible to control exposure to the urethra from fecal waste). There are lots of tips and hints about controlling these, like higher doses of Vitamin C, Cranberry (juice, concentrated tablets), Probiotics, d-Mannose (if the UTIs are recurrent with strains of e-coli), plenty of fluids (ours is restricted due to a congestive heart condition), keeping sugar intake to its lowest possible (UTIs *feed* on sugars .. and remember that starches convert to sugar).
Let us know how it goes!
Blessings,
LadeeC
I'm wondering if you could pay to have someone care for your mum during the day and then have another person look after your mum from evening until morning in exchange for a free place to live? That way you would not be having to pay out cash for 24 hr. care just for 12 hrs. Would this work?
I live in a building where many families hire live in nannies, I tapped into that network. I asked everyone I knew, I had a lot of leads for good people.
You have to know what the going rate is for what you are asking. If you underpay your caregiver will move on when they get a better offer.
The going rate for live in care (children or adult) in Miami was about $300 per week, you also need to provide room and board and should expect they may want to stay over on their day off if they do not have other family or friends. They accept a lower salary because they get to live in a neighborhood that is better than a minimum rate job would otherwise allow, typically. Some of the folks who do this are extremely kind and good and passionate for there job. It is a tough low pay job, so most of these folks have limited options, low education, limited English, etc,. Try a church in a lower income area, they may know of someone who is looking for "placement". Typically they are ladies who either do not have, or have already raised, their children. This typically included light housekeeping and cooking.
This however assumes the patient does not need care actively all night long, an occasional bad night is ok, but if true 24 hour care is needed, you need people who rotate actively on shift. Agencies are 17 to 22 per hour. There are 168 hours in a week, so it adds up fast. One "catch" to be aware of some agencies do not permit caregivers (these are not nurse professionals) to dispense meds.
Private individuals can be about 10 to 15 per hour. Like any service provider, the quality has to do with the individual, not the rate, but people who are great are always in demand and have higher rates.
Private individuals are less expensive than agencies, they may also not be formally trained and have no backup. Be ready to train and supervise until you feel comfortable. Delay delegating complicated tasks such as loading the weekly pillbox. It is a riskier approach, I personally found a Godsend.
Hope this helps. My research s a little dated, but provides a range.
It is expensive and it adds up quickly.
Best of luck
L