How has caregiving affected your monthly budget?

Caregiving for my father now my mother has turned out to be a full time job.

I run all the errands, Dr. Visits, pay bills, cook all meals - etc. and we are now spending 2 nights per week in my parents home.

I keep my  reciepts and my mother reimburses me.  This is working so far.  I do get a little tired at times - but I make the best of it.

I would like advice from others on how they manage their budget, etc.

Thank you - JJ 

Thanks for responding, JJ ! I agree with you, caregiving can definitely strain your energy-- and budget. Just the doctor visits alone would wear me out and take huge chunks out of the day.

It sounds like you have a good system set up with your mom about getting reimbursed. I'm sure having the reciepts handy helps prevent a lot of conflicts or arguements that might come up about money.

I found some great money tips in this blog post :

http://www.caring.com/blogs/caring-currents/5-money-mistakes-nearly-everyone-makes

Hopefully others will come along and share their budget management tips as well.  know I could definitely use all help I can get !

Cargiving for my mom started out out of pocket and it wasn't that bad cost wise - then she got worse and some one needed to be with her all the time -we finally had to put her in an ASL in Fl. - we are still paying out of pocket but in comes out cheaper this way and she gets better care.

Thanks for responding, Babs! I can see how ASL would still be cheaper than trying to find full-time caregiving in your own home or even trying to do it yourself. There are a ton of "little" costs that can add up quickly!

What exactly is "ASL"?

I'm pretty sure it stands for assisted living. Someone correct me if I'm wrong, though!

Caregiving forces you to budget and you do have to make sacrifices.  We cared for my 88 yr. old mother-in-law in our house for over 3 years.  Her SS and pension is $1100 and she has some in savings, but no LTC insurance or retirement savings.  Trying to save as much of her money as possible for future nurisng home or medical bills, meant my husband and I giving up a lot.  No more vacation trips, rarely eat out and only buying the "must haves".  I think I'm one of the few that does not have a home computer, iPod or digital camera.  Those would be splurges and our mortgage pymt. is hefty.  When she was with us for the 3+ years, our electric/gas bill would be $400-$600 during the fall and winter months.  She "needed" it warm, ideally 75 degrees or higher with a space heater constantly on, too.  Some of her meds that are not available in generics are costly, too.  The biggest cost was us having to buy a new home with the right floor plan for her as she can't go up stairs at our old town house and is prone to falling.  Buying this larger home 4 yrs. ago in Northern CA, cost a million and it is not a mansion, by far!  Anyone in No. CA can remember home prices here 4-5 yrs. ago for a good home in a nice neighborhood, can probably relate.  So, we wiped out our savings and now have a huge mortgage...and the property taxes are over $12,000 annually.  Yes, the house value has dropped greatly in this last year which is extremely scary, but we don't want to panic and sell as many are doing in our area.  We just moved her out to a residential care home (RCH) less than 2 months ago because her doctor said it is now a safety issue in our house with her falling more often and a medical necessity for her to have caregivers daily.  We had paid for a P/T caregiver in our home for 2 days because it was all we could afford.  While this RCH is $3000 a month, she is safer BUT she hates it there, of course.  We are hoping she settles in soon but she is demading that we take her back to our house and she recently stopped eating this week, plus is not nice to the caregivers.  This is causing us great stress, she will not go to the doctors (we want her evaluated for possible dementia) and we are at our wit's end.  While the last 2 months have been nice not having to bathe her, cook to her requests and listen to her loud TV blaring from 7 AM to 10 PM, it is a different stress now.  Can anyone relate or offer any advice?  I left a mssg. for her doctor yesterday and have the caregivers watching her closely.  She is very angry with us because we won't take her back to our house, even though we remind her what her doctor said and it is not safe with us working during the days.  I think my husband (her only son and relative left) may "cave in" and I hate to sound mean, but I am not looking forward to going back to being her caregiver again.  I have a stressful, demanding job and my own elder parents to check in on, too.  I feel so very torn!

Excellent topic. Caregiving has effected our budget emmensely. Some of these items are already mentioned in other posts. We went from living off our business proceeds to my husband's SSDI and my early SS. This is a big decrease in income. He caregiving needs and schedule are erratic, so 2 yrs after the TBI, I still have not been able to even get a PT job. In sum, our income has been hugely effected downwards. I am a little resentful because I am the only family member making this financial sacrifice, plus we receive no help from family even though they could afford to help.

Then, our expenses are up. Our electric bill has more than doubled because of 2 or more extra loads of wash daily. He pushes the thermostat up and down continually during the day, someytimes putting it accidentally on Air in the Winter, or Heat in the Summer. Then we have to crank up the Heat or Air to correct the problem.I prepare 3 meals daily, 7 days a week, increasing our utilities for cooking and running the dish washer.  Eatting meals out is no longer part of the picture due to costs and amulatory problems. Now instead of using the car to eat out, I use it to shop for groceries.

I was awarded my husband's Guardianship so the annual Court costs, annual bond, charges for having the annual accounting, legal advice, are all extra expenses - and they are sizable. Parking fees and gas for Doctor and Therapy visits. Special glasses to correct his now double vision, Expensive dental work and dentures because his medication and impaired ability to properly care for his teeth, caused major problems. Auto repair which used to be done by my husband now must be paid for. The same for plumbing and other home maintainance. Any given week, something in our home will be broken. This is because of his unsteady balance, or his anger if his medication is wearing off. I have had to spend money to repair  anything from the big bathroom mirror, to towel bars pulled out of the wall, to dropped plates/glassware, to pots put on the stove and forgotten. I am repainting rooms I painted just last year because he needs to guide himself by touching the walls. Last week I super glued the handle on our new fridge, because he forgot that it pulls outward and snapped it off when he treid to pull it sideways. Repairing damage to our home and household items is a significant expense. Because of his impaired eyesight, he should have a large screen TV. I am trying to save for this but so far with no success. We also need to obtain a more dependable car, both for his appointments and beacuse if something were to happen he is no longer available as our family back up driver.

What upsets me is that for the last 2 yrs I have worked twice, - maybe three times as hard as previously, yet I get no compensation, I am not doing anything that will help my future  financial security, and get practical nor emotional help from family.

I also take care of my mother-in-law in our home. Her husband moved to be with his daughter and my mother-in-law did not want to move. My husband is her only child so he wanted to take care of her. They don't get along well so I'm the one in the middle. She is very demanding. I'm trying to get help with taking care of her but it's hard.

Budget is effected big time when home caregiving. My brain injured husband was living at home for 2 years and will be returning again this week. He has been in a skilled facility for 3 months. I am shocked at how much cheaper it has been with him out of the home. Our electric heat is half what it was the previous 2 years for the same months. He needs it warm. I run a laundry load twice a week instead of 3 daily (he drools and drops food on his bedding). I run the DW every third day instead of nightly. Last year I was shocked to find I had spent almost $1,500 in medical co-pays - and these are from our hospital charity program and community clinics! My gasoline is now quadrupled though because of daily trips to visit him, and I give him spending money daily, so any savings are taken up by new costs.

The bottom line is that caring for an ill person, whether at home or in a facility is very expensive. His family refuses to help, although his mother and siblings are well able to. His mother has long said that Medicaid and Medicare will take care of his bills. We all know how expensive Medicare really is, and Medicaid is already over budget in our State. I am struggling to get him approved for Medicaid LTC or we will have a $16,000 facility bill when I bring him home. Our State does not have an income waiver for brain injuries, so we must qualify under the same poverty guidelines as non disabled persons. The LTC program is really meant for elderly and requires a 5 year lookback period. At 55 yrs old,believe me, my husband never ferreted away assets thinking he would 'get over' on Medicaid. It's preposterous to require a severely disabled man who can barely walk, talk, think, to go through all this. We have run through assets while caring for him and waiting for Medicare to kick in. Now I find that Medicare is terribly expensive, and am trying to get State Medicaid to pay the supp. Ins monthly costs. With his disability, both our Medicare costs will take 1/3 of our monthly budget. Let's not forget to mention the hidden costs of not being able to work outside the home, or the costs of hiring someone to watch while I go grocery shopping.

July 17, 2010 Dear (and not so dear) family, friends, haters, critiques, ex-family, in-laws, doctors, counselors, church Body, property manager and decision-maker/department heads alike; as well as, all who God almighty would have to read this, including anyone who can help this cause that you see fit to forward this to. I pray that this letter finds you healthy, prosperous and well-cared for! I also pray that God be glorified and exalted, because only He is worthy of all praise. I pray that in all that I may think, say or do here and all that is meant for you to receive, you will receive; all that you are not…, you won’t receive. Oh Lord, it is not my intent to dishonor You in any way, because You have truly been faithful to my mother and me (despite all my many imperfections), and for this, I thank you! I thank You for loving me, for Jesus…, keeping me in You, for being my Burden-bearer, my Way-maker, my everything and receiving my love for you, in Jesus’ name! AMEN. My purpose for this correspondence is to bring those of you who care to know the status of our 78 year old mother, your grandmother/great-grandmother, brothers and sisters in and out of the body of Christ, in-laws and ex-family. Firstly, allow me to update you about the progression of the current situation: Spring of 2007, she was hospitalized and diagnosed with Vascular Dementia, which was brought on by a TIA/mini-stroke. The TIA left her both with a right-sided weakness and a little psychosis. So, she was sent from the hospital to a rehab/nursing facility, there she was diagnosed with Depression. She spent about 1 ½ years there, successfully receiving occupational, physical and drug therapy. When the success of those therapies took affect, everyone (clinical professionals, non-clinical professionals, staff and visitors), who met her there verbally stated that she didn’t belong on the Alzheimer’s (locked) side of the rehab/nursing facility. So, because of my resolve to glorify God (and through Him – my undying love for my mother and the non self-serving, unselfish, God-given gift of caring), when we went for walks there, I would walk mama around to the skilled side and even have meals with her in the dining room there. Eventually, I requested that she be moved to the skilled side and the request was met with a surprising response from the director of that facility. He stated, “We will move her and begin a 30-day discharge plan.” I emphatically explained to him that there was nowhere for them/us to discharge her to. That fact was totally ignored and dismissed! Thirty days later, they did DISCHARGE her, contrary to a lie that is still circulating through the family and even the senior community where we now live. As God is my witness, I did not and would not have just gone and taken her out of there without having a secure place for her to go! The lie is from the pit of hell being spread through ‘someone’ who has WAAYYY too much time on their hands and ignorance in their mind and heart. I have come to believe that although God allows certain things for His glory and our good, I must remind you of Psalms 105:15? It is just like satan, to use others to cause confusion and a distraction from the more productive facts at hand. Now I don’t mean to blame satan for every error in life, because some things are just common sense. The true fact of the matter is, I was blessed to meet a lady at the local Wal-Mart where the rehab center is. It just so happened, that she had a friend that was opening a Personal Care Home not far from the center. I called her, she met with mama and I, toured the home and I made a crucial decision to place mama there. The move was met with opposition and self-centered negativity from family who said, “…that it was too far for some to go and visit.” Never mind it was clean, comfortable, safe, sufficient and efficient enough to allow us all to continue with our own personal lives. IT SEEMED NO ONE WAS RESPONDING! None-the-less, mama stayed there for about 1 ½ months. So, I through the love and grace of God (being the strong/selfless/giving-without reserve one in the family), was forced out of my own bachelorette-mode. I had to take her to my clean, comfortable but insufficient, unsafe and inefficient apartment. There she was met with a flight of 15 stairs, on the 3rd level of a private home, no fire escape, no gas (for cooking/heating) and no phone. Needless to say, my job that I’d had for 5 years took a back seat; I had to stay there with her, which was very difficult for me since I truly enjoy working not just one job but at least 1 ½ jobs. I had to quickly learn that it wasn’t about me but it was about meeting the immediate needs of my loving mother, who had also sacrificed so very much in her lifetime (which is a given occupational hazard, when you’re a parent).
My neice Kristen, the other strong family member, who I must take a moment and thank God for and her family; I shudder to think about the sacrifices that they must have had to make, then and now. Although, she wasn’t reared around mama or us, she has been/is there in a big way, to the best of her ability as much as she can and she is (thankfully) mama’s granddaughter and financial power-of-attorney. So, one of her very important roles, spares me the time-consuming task of having to be put on hold & deal with a mountain of paperwork regarding the annual STATE/FEDERAL entity of this process. Although she is a dedicated wife and mother of 3 beautiful babies, she is also a vital part of protecting our community committed to serving as a law enforcement officer. Despite all of that, she still finds time to care for her grandmother and manages to push through all of that and help out. She repeatedly/unsuccessfully would try to request help from other family members, to no avail. IT SEEMED NO ONES’ RESPONDING! They seemed too stuck on the lie that since I took her out of the Rehab/Nursing facility, I should take care of her. Any who, Kristen would come and get mama to spend the night in her family’s home which allowed me to work my 3rd shifts on weekends only. Otherwise, I had to take family leave without pay, which totally depleted any cash on hand, since (unfortunately) I live from check to check, like most of us.
About 2 months later, Kristen suggested that we move to a place that was more conducive to mama’s needs, which is where we’ve been blessed to live now for the past 3 years. Living here definitely has met her most immediate needs! For starters’, no stairs, a safe/gated comfortable place to walk, a chapel with services 4 times a week, others in her immediate peer/age group, prepared meals (when absolutely necessary), even a place to have her hair done (since bending over a sink is not possible for her to do), handicap accessibility, 2 laundry rooms on each of the 3 floors, front desk sign-in security, it’s clean, with a lovely decor and a neighborhood Mental Health Facility next door. It is a 1 ½ bedroom 2 bathroom apartment and although my ½ bedroom with ½ of a closet, is a far cry from the spacious bachelorette apartment that I had to sacrifice and give up, it has met a few of my needs, as well. I also had to sacrifice the comfort of sleeping on a mattress, because the one that I had belonged to the landlord where I lived. So, I made a palette on the box spring and uncomfortably slept there for the first 1 1/2 years, until I could buy a good mattress. Again, it wasn’t about me but it was about what mama needed. After moving practically everything in my car (which tore up the interior), practically by myself, I was finally/immediately able to breathe and return to work!
From that point everything was going along just fine I was just beginning to financially recover from having moved into where we lived, on a dime. Then, one Sunday morning I came in from working a 3rd shift; I found her lying in her bedroom floor, she must have fallen sometime during the night. Since this is already a long story – getting longer, I will just say she had managed to break her foot in 4 places. It became necessary to call in sitter’s to be with her part-time so that I could go to work. This was very temporary because they would be late, not show up, she wouldn’t let them in, she wouldn’t do what they asked, they wouldn’t do what I asked, by law they can’t make her take her medicine, things came up missing, or she wouldn’t cooperate with them because she felt like she was the boss of the hired help. It was always something that continued to negatively impact my job, which relied on me very heavily! I began to listen to a co-worker who told me about a state program that would pay family for caring for their loved ones. The first couple of times that she mentioned it, I was very offended and responded by telling her, “…I don’t need anybody to pay me for taking care of my own mother!” It wasn’t until a coordinator from that program mentioned the same thing to me that I began to really pray and consider it. I finally accepted the fact that the small stipend could help fill the gaps for the money I was losing from not being able to work like I used to and that The Lord knew my heart in accepting it. So with that, I applied and was accepted as her paid caregiver. Not long after that, since I was unable to work like before, it eventually impacted the department and company that I worked for. They terminated me first and then the rest of the staff in the department and closed the department. It wasn’t the ultimate, but yet another sacrifice. It was devastating and caused another financial decline!
Although I made Kristen aware of what was going (since she seemed to be the only one listening), she was really doing all that she could to ask for help. The Lord did bless me with occasional breaks via Kristen’s mom, my baby sister who was able to return from out of state and help out; so kudo’s to her for just coming and keeping mama company as much as she can. She now cares for a precious 99 year old lady and is just finishing up with a late-in-life educational endeavor. I thank God for what she is able to do with what little she has to offer; I am so proud of her accomplishment and look forward to her finally becoming financially independent. Also, ‘kudos’ to another out-of-state sister who came for a week and just focused on sitting with mama; that was an invaluable sacrifice that I’ll never, ever forget and one that I’m almost envious of, because just sitting with mama is a miracle for me in light of all of the other things that I constantly have to do on a daily 365/24/7 basis. So, I thank God for the both of them and what The Lord blessed them to do. A month later I received the first caregiver check for the previous month’s care at the rate of $8.00 (and eventually $9.00) per hour for 72-80 hours a month. The program only allowed for what was left in mama’s Medicaid budget, after other expenses. Strangely enough (after many repeated inquiries), I was encouraged to apply for Unemployment Benefits, which I was granted as well. We were once again well on the road to that financial recovery and by the end of the following year the rent had remained current and I felt financially stable. So, I made a proactive decision to return to school to acquire what I thought would be the means of being able to work from home, as a Medical Biller and Coder. Because of the prevalent educational initiatives available, I was blessed with a full-ride $5000.00 scholarship, praise God! The following fall, the unemployment ran out and the financial destabilization resurfaced. Realizing that my efforts to take care of both of us on one small check, became very frustrating. So, I immediately began to look for part-time employment and tried to let people know, we needed help; IT SEEMED NO ONES’ RESPONDING! Almost simultaneously, we received notice that the State of Georgia never intended family members to receive compensation for care of another family member. However, it did allow for some exceptions to be made. So, I made that request for an exception to be made and it was denied. One of the programs employees’ encouraged me to file an appeal; which would be heard by a State of Georgia Administrative judge; which I did.
Meantime, the school program also offered Supportive Services for such things like assistance with the rent. This required a federal document from the property manager and my signature on an Addendum to mama’s lease. I had repeatedly asked for the government document, to no avail. IT SEEMED NO ONES’ RESPONDING! As well, since the household food stamps were only enough for one person, I had a difficult time getting a separate lease so that I could apply for stamps. This would have helped to reduce cash expenditures, but it took 2 years and it was not a separate lease (as requested). IT SEEMED NO ONES’ RESPONDING! After signing it, I was told by the property manager to withhold the rent. I allowed myself to think maybe we were going to be blessed to have the rent further subsidized and wouldn’t need the help from the school (since I didn’t hear from the property manager otherwise, for 2 months). When Kristen and I finally called to inquire about the directive to withhold the payment, we received an invoice stating that the balance was only $148.00. I thought even with my ‘bare-bones’ income, I can do that and focused on trying to complete my externship – volunteering at Grady Hospital 4 days a week. However, just as I went to get the money order to pay the $148.00 (about a week later), we received another invoice for about $2000.00. Something had gone terribly wrong and unfortunately my response to it didn’t make it better! I did something that you probably wouldn’t have done. I felt burned out, I felt like I was about to hit a wall and turn into liquid. So, I thought the best thing to do is:
BRACE FOR IMPACT Since I couldn’t come up with $2000.00, I decided to do what I’d done so many times before, I focused on what I could do. Perhaps this is best said thru an email one of my sisters sent me: Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." -Matthew 6:34 God supplies all the strength we need to do all that He's called us to do. But He rations this strength much in the same way He rationed manna to the children of Israel. He provides sufficient strength each day for the challenges of that day...and that day only. This strength doesn't carry over from one day to the next. You either use it, or lose it. And He will not give you enough strength today for the confrontations, obligations, and challenges of next week, next month, or next year. That strength will be deposited in your account precisely when you need it, and not a moment before. I began to look at the fact that I needed to focus on making sure I took care of me. I began a more intensive job search for full/over time work, which required computer expenses, car care {a new long-overdue radiator), gas, staying on/buying plenty of allergy medicine for me, justifying pedicures, eating out, buying mama whatever she needed (instead of all the time asking & waiting for Kristen), I paid double on my health/car insurance, the phones, the storage unit, her OTC drugs, activities for her, spending time and change on the grandchildren, etc., In essence, the (already questionable) budget went out of the window with the justification that there was nothing I could do about it and I was tired of trying! I’d suddenly lost sight of my purpose for all of the aforementioned reasons for staying focused. I was reminded of my childhood memory of watching my ill-prepared/overwhelmed parent’s with 6 kids, when we were getting evicted or had no food they’d buy cigarettes. Since I’d lost a handle on maintaining the rent, I realized I was trying to soothe that miserable realization, with something I could afford. I AM TRULY ASHAMED OF THIS and apologize for letting things spiral out of control to this point of being 3 months behind with my-half of the rent, which is $488.00 per month & still outstanding. As if things couldn’t get worse I just found out 2 weeks ago, the State’s Administrative judge ruled that I can no longer be a paid caregiver. So, because my income is (at the time of this letter), a big, fat, frightening $0.00, we need help!!! To all those who were not listening before, CAN YOU HEAR ME NOW! Now, as my search for a job has intensified, I struggle to free myself from where I have felt trapped for a while now, at the risk of having to leave mama here, ignoring her like she doesn’t matter or exist. Despite my continued efforts to find a job or work at home, it has not come into fruition and I now feel tired, destitute and penniless! Although I have again filed for unemployment, I suppose it takes a couple of weeks to get a favorable decision and/or check. In the meantime, I am preparing to put as much as I can back into storage, focus on trying to get mama placed in a personal care home, prepare to live out of my car and acquire gainful employment. Whenever the job comes through, for whatever shift or hours, it will be necessary to totally abandon the needs of my mother, totally. It is unfortunate to say but I no longer feel like I’m going to turn into liquid, I have; I’VE GOT NOTHING LEFT TO OFFER/I’M EXHAUSTED! Understanding this, I tried to speak to Kristen about the fact that mama’s increasing needs for care will continue to jeopardize our jobs; again IT SEEMED NO ONES’ RESPONDING! In retrospect, I now know that the more we got ‘no response’ it seems the foundation must have slipped away from me, without my even knowing. It seems my efforts to get mama to a safer place, is again falling on deaf ears. I went ahead and made the PCH arrangements anyway in an effort to prevent mama from being involved in unnecessary disruption. In closing, if you haven’t guessed already, this is another call for HELP and I hope & pray somebody is listening! The arrears need to be paid and I am not currently, nor in the immediate future able to pay it, short of a miracle. Unfortunately, I must ask all who may read this for assistance of any kind (especially prayers and devine direction). I know things are hard on everybody right now, so any amount is more than I currently have. I trust mama’s granddaughter/P.O.A. Kristen, to receive and forward any contribution on my behalf, to the property manager. She can be reached through the following:

{{edited to delete personal information on a public board}}

Again, I apologize for the inconvenience and burden this may cause and the lengthiness of this letter (that I hope answered all questions), and I greatly appreciate your prayers for God’s perfect will to be done and all other assistance. Sincerely, Amanda