When I think about caring for my dad in my home, I tend to group the associated costs into three basic categories:
- Soft costs. These are the incidental costs associated with having another person live in the home, such as increased gasoline expense, and the hidden costs, such as increased wear-and-tear on carpeting. (Trust me, Dad's walker scraping back and forth across the newly refinished hardwood floors will definitely take its toll.)
- Hard costs. These are expenses for things like additional furniture and accessories, increased utility costs, groceries, and incidentals. In short, these are costs that can be quantified.
- Human costs. This includes the emotional toll of caregiving.
In an effort to be as candid as possible, I want to address the hard costs of caring for a loved one in your own home. Lee and I are lucky: we both have good jobs that afford us a nice standard of living. Hence, we have been able to spend some money on necessary items (like a new bed for Dad), as well as fun items like birdfeeding equipment (because Dad loves birdwatching). Here is a list of what we have spent so far, including amounts we shelled out in advance of Dad's moving in with us.
• New bed: $600
• New mattress and box spring set: $700
• Bedding: $100
• Dresser for Dad: $600
• Bedside table for Dad's room: $50
• Used wool rug for Dad's room: $70
• Hamper and other incidentals for Dad: $50
• Additional end table for the family room: $50
• Floor lamp to place next to Dad's recliner: $60
• Foods we would not normally buy but purchased because Dad likes them (such as various cookies and snacks): $100
• Birdfeeders and seed: $80
We do expect our utility bills to rise, but Dad hasn't been here for a full month yet, so we don't know how much higher they will be. Some reasons why our electricity, gas and water bills will rise:
• Used to run the dishwasher twice a week; now run it nearly every day
• Used to leave the thermostat turned down to 60F during the day; now leave it turned up to 72F
• The electric space heater in the family room was formerly used only in the evening; now it's used all day, every day
Dad purchases his own groceries and covers all of his non-utility expenses, so we're not complaining. I simply wanted to list some of the home caregiving expenses we've incurred so that others will know there are real financial ramifications to taking a loved one with dementia into the home for care.
Also, we tried to shop for used furniture but were unable to find what we wanted – especially on short notice. We figure the furniture to be an investment, as we can use it for the rest of our lives. And, really, isn't this why God created MasterCard, anyway?
What is hard about this deisese is that one is watching a beautiful mind go crazy.
I love the idea of a shower! Next time someone asks me what they can do for us, I will try to muster enough courage to ask for this. I have e-mailed all my friends a couple of times to ask them to save coupons for me for Ensure. It's so expensive and my husband depends of that and Benecalorie for his daily nutritional needs. He hasn't been able to get solids down for well over a year. The bulk of my grocery budget goes to pay for things he needs and I buy my food out of what's leftover. God has never let me miss a meal yet and I don't think he will. I have learned to live simply and with much less. These are sacrifices I make out of love for my husband.
Since I have been posting here, I will let the commuity know that my husband of 54 years passed on Sat Feb 20 at the age of 74. I like to think of it as his "Continuation Day" because I believe his soul and heart are safely in heaven after a very long illness. To fit this subject, I now have paperwork to do and I already know that his pension amount will be lowered and of course his social security check. So my income will change. I am lucky that it shouldn't effect me too much, but for many others it is an unexpected "cost" that will effect those left behind.
JoyG, thank you for your post. It helps to talk with those who know what you're going through. Today is a good day. I have a caregiver coming to do the bath, sheets, cleaning the bathroom, etc. and I am going to a play this evening with a girlfriend. Just a little breathing room makes all the difference.
Living in the now is a top priority. But you are also planning for the future which is a necessity. That is what I write and coach on, being prepared for what MIGHT come so life is not so stressful if and when it happens. Congratulation on your plan.
I haven't been online for a while. Life has been overwhelming. While my husband's physical condition has stabilized, the Parkinson's seems to have reached a plateau for the present, his dementia is progressing full speed. In the last few weeks, he has been convinced that I am having an affair, that our 51 year old daugher has been sold and has gone far away, that his best friend hates him, and on it goes. I never know what a new day will bring but I know it will bring some new challenge. It is to the point that I feel I must have some help with his personal care - bathing, shaving, etc. I'm still working full time, an absolute necessity if we want to keep a roof over our heads and the bills paid. While working gives me a break from the stress, it also creates stress. It can be a lose-lose situation if I give in to the fear. My psychologist (yes, I have one and I love her) is helping me deal with letting go and getting some help and with not constantly fretting over how much longer this will go on, among other things. Truly, it could go on for many years - or not! I was reminded of a phrase we used before PD, "living life in the now." Now is all we can be certain of. Those things we worry about in the future often never materialize. So, I'm working at being in the moment and letting tomorrow take care of itself. Still working hard at paying off all debt, in anticipation of the need to place him in a facility. I'm in Virginia and will lose his income and a large part of mine to get him approved for Medicaid, so the financial strain will be lessened a bit if we can be as debt free as possible. Somehow, it always comes back to money. It seems wrong that health care decisions have to be made based on money, but the reality is that they do. As oreoo said in her post, surely there is a place reserved for caregivers in heaven!
Elizabeth, by the by, my electric, gas and water bills tripled in the first full month. Higher ambient temp, lights on everywhere all the time, laundry thrice as frequent (accidents!), diswasher three times as often. Painful, but we just got used to it--seems normal now. I HAVE however, reached a point where, although I would never have it otherwise, I cringe when sibs come from out of state (usually for a week at a time--about 10 weeks of company per year)to visit, as a simple glance at the utility bills can give the visits at a glance--about an extra $600. per year for visitors. Yikes! The relief they bring with their visits makes it worthwhile, but it IS a lot of dollars--so not a complaint, just an observation.
Galowa, Not Myself, Mary, et al. These posts reminded me of something I blogged on caring.com (my very first) many months ago, in July. After 8 months of caretaking, from Oct. 2008 through June, Mom went and died on me anyway. I had 10 hrs. off during 8 months—Mom said she needed to have me with her all the time and I was there to give her that security. I don’t remember what I blogged and I’m not computer versed enough to look for it but one thing for certain, I was ticked, really down/dirty ticked. I brought Mom back from a doodle mental state, because of lack of any caring, to a point where, by Feb., she was more coherent and aware and physically much better. Hospice even agreed that taking Mom to our home in KY when the weather warmed, a 10 hr. car trip, was a good idea. Mom had COPD and a flight was out. In March she had pneumonia and that was the beginning of the end, no matter what I did. In June she went into Hospice, lasted a week, and boombang, up and died. I’m still angry because I couldn’t perform a miracle but its lessening, thanks to grief counseling at our KY Hospice. Mom lived in NY. During the last half of caretaking, I found caring.com, never thought to blog, just read. When I got home in July, I let it all out in a blog on caring.com. Probably I was not ‘nice’ at best and probably incoherent but the anger of it all was there. It was then I knew I was in deep trouble. A while later I called Hospice and truth be told, the best Grief Counselor. Papa died in Oct., Mom in June, and our baby sister in Jan. What I mean to say, I guess, is that whatever anyone writes is how they feel at that time. I might have come across as a mean spirited person but I’m not, but at that moment in time I was. If I had known how to get back to any comments on what I wrote and someone had criticized me for it, I’d have stayed hidden. I still reach for caring.com because you all are an important part of my life. I passed this site to my counselor. It’s okay to vent, it’s okay to share—lightens the burden and puts everything into a reality. And Galowa, I thought your first post on this particular site was right on. I didn’t get any anger, just a reality of your situation that we all are in. Thank you to all of you.
I'm sitting here laughing, because I just logged on and realized the one item I hadn't read at all--missed it COMPLETELY--was Elizabeth Shean's post! Shame on me! Thank you, Elizabeth for addressing the seldom considered real dollar cost of caregving beyond things medical. Both of my parents live with my husband and me. My mother has AD and my father has angina and is in chronic a-fib. My father, fortunately, knew what would come to pass, and set up a joint account with me for deposit of his and my mother's social security and pension checks. At the time, I thought it was excessive, and said so. He told me to spend whatever I had to for whatever I had to, and that I should think of us as the household of four that we are, with their retirement income a regular part of our now joint cash flow. I have eight siblings, so I do keep track of what I spend. I can't imagine any one of them questioning the arrangement, but from this site and elsewhere I have learned that it is wiser not to make those assumptions. I am very fortunate in that my family IS supportive--not always enough, and not always when most needed, but so it goes. If I have a point, I guess it is that money HAS TO BE a consideration. I am grateful to Elizabeth for her itemized list, which I'm sure is not complete. We all lose track of the little things. I am sooo thankful for my dear friend Ms. Quicken, which allows me to allot the expenditures easily--a must for taxes and "accounting" purposes (as in can you ACCOUNT for that $2300 tax refund of Dad's?). And whoever mentioned the virtually inevitable mixing of funds? Amen to that! I stop at the pharmacy and use my own debit card for their meds. I go to the supermarket and don't take the time to separate the grocery items that are not family-common. And yes, depends are excruciatingly expensive, as is ensure, gatorade, and the plethora of vitamins and supplements recommended by the physicians. Gas and auto wear and tear for medical appointments (averaging six per month for various specialists, blood monitoring, yada, yada, yada). We have also recently purchased a carpet cleaner. Whoever thought that would have become a necessity? To make a long story longer, I will just say that what my sweet and dearly beloved 91 year old father (I say that in all sincerity--he is a wonderful man)truly believes that he is giving me a good bit of extra cash to help me out with my own expenses. In fact, at the end of each month, my "salary" is about $400. Please don't misunderstand me--I do this willingly, and with eyes wide open. BUT...to do this without considering the cost is not just foolish; it is irresponsible. Heaven forbid that anyone should undertake this journey without consideration for the cost of the trip, and the distance to the destination. Otherwise, as they say in Maine, you just might not be able to get there from here!
Hi, Mary! I had surgery about three weeks ago, and have not been online much. Came back to find this thread yesterday, and havve been losing sleep ever since (well, at least it's only 24 hours, lol). I'm kind of surprised--I haven't read through all this yet--not even sure if I want to! I will say this much: I was absolutely stunned to start reading, and see Galowa defending herself. And then I did a whiplash spit-take at Missy's intervention--wondering what in heaven's name provoked the intervention of the "grown-ups" in a conversational mode that I had previously thought was grown-up enough. SO . . . I have taken a great deal of comfort from this site, and have found everyone here to be caring and giving--almost to a fault. In fact, it IS often a fault! We are human, and we tend not to look enough to our own well-being. It is not an option. It is an imperative. This is ALWAYS Galowa's message. I understand thoroughly her distate for anonymity, although I understand how one walks "in the door" as "anonymous". On the other hand, we are all in the same boat, and it's a VERY big boat. We are many. We are almost legion. We are tired. We are frightened. We walk unafraid and unknowing into a fearful and unknowable place. We use our names (pseudonyms though they may be) so that others will know us--or we hope will come to know us. Unfortunately, there are hundreds of "anonymous". We who expose ourselves (however pseudonymously--whew--there's a new word, huh?)put it all out there. For better or for worse. Richer or poorer, etc. Yeah--almost like vows. We log on, sign in, and put it out there. Not everyone can do that. Ok. No problem. I started this post (or whatever it is) to tell you: I get it. We all get it. It is pure and unadulterated life as it is, or is not, worth living. I really do get it. So here's how it was for me: Someone sent me, via email, a copy of Paula's blog a while back. I was in. Bought. Delivered. I posted. I was desperate. I am a psychologist--bona fide. I have degrees out the wazoo. And oh, lordy, was I flailing! Galowa, online, pulled me out of the water by my hair. I believe I can say in all honesty that she saved my miserable life. The thing is, it won't always be this way. I get that now. I don't have to love the way the disease affects my family--in fact, it's perfectly fine to hate it. I do, occasionally (ok--maybe a little too often) hate my mother for my life. Yes, she gave it to me--but now she's taking it back. BUT it is NOT my mother per se--it's the damn disease. I know that. I also know that I have to take care of myself before I can take care of anyone else. Nobody drinks from an empty cup. THAT I LEARNED from Galowa and a couple of other gutsy broads (sorry--love that phrase--says so much!) who took the time to make themselves known . . . allow themselves to be known . . . and to know me. I'm here now. Present. Answering roll call. Thanks Mary, for being Mary, and not "anonymous." Too many of those, and not enough "Marys". I mean this in all the best of spirits, and hope you accept it as such. It just pains me to see someone I have come to so rely on come across so badly without understanding why. I love that woman, as I love many other women on this site. I'll show my age, and say "we are strong, we are invincible, we are women" (sorry guys--just one of those "mostly" things). What we are NOT is perfect. Not a one of us. Ever. But I don't want to apologize for myself, nor do I want anyone to apologize for me, or for anyone else on this site. Thanks, Mary! Glad you're here. I need you, too.
Hello Caregivers, My name is Missy and I'm the Community Manager for Caring.com. It seems we have some hurt feelings and disagreements as comments to this blog post. I'd like to remind you that all comments/posts you make on Caring.com are bound by our Code of Conduct (http://www.caring.com/about/community_guidelines.html). Please pay special attention to the section regarding personal attacks. Honestly, caregivers are like snowflakes. We're all different. We come from different places, we're different ages, those we provide care for have different illnesses...you get the picture. Caring.com was created as a place where we can come to get support. That doesn't mean we have to agree. How boring would it be if we always did? But we do require you to interact respectfully here. We're all in this together, both in caregiving and making this site the type of place we want. Thank you, as always, for keeping our Code of Conduct and regard for others in mind while participating on our site.
Dear Mary Bregenzer, Thank you for gathering the courage to reveal yourself - now you can truly "be" yourself - knowing you are welcome under every and any circumstance - the same being true for every comment, thought, and feeling you share here. Please know that although I may have "embarrassed you" by pointing out what I consider to be a "somewhat shameful act," (that is, criticizing anonymously,) at NO TIME did I ATTACK or RIDICULE YOU! (I understand that it may have FELT to you as though I did, but I didn't.) In FACT, I have never attacked or ridiculed ANYONE online. All I did was point out the shamefulness (or cowardice) of criticizing anonymously. Since my biggest issue with you was the fact that you were CRITICIZING ANONYMOUSLY, (and that is no longer at issue,) THERE IS NO ISSUE. . SO let me say now, how happy I am that you are no longer watching from the SIDELINES, but are now a bona fide PARTICIPATING MEMBER on this site. That takes REAL COURAGE! Making an OPEN contribution was an act which transformed you from being a "following" READER to a "contributing" LEADER. Coming forward as you have done will hopefully encourage others in your former position to do the same. Regarding my own disposition, it is true that I was recently emotionally frustrated in my personal caregiving situation, (and I AM as entitled as anyone else on this site to express my frustration once in a while!) However, contrary to your "impression" - and your latest statement about my being "totally angry," - anger is SO FAR from what I am REALLY about that your new comment actually made me LAUGH! (ALWAYS a GOOD thing - thank you!) I doubt you have read all "140" of my postings, for if you had, undoubtedly you would see how inaccurate your current impression is! I look forward to all YOUR future postings and welcome you, again, as a newly CONTRIBUTING member of Caring.com... ALWAYS, Galowa ; ) .......©suzannemcable.2010
Hello fellow readers,bloggers,caretakers,siblings,children,grandparents and any other adjoined title I unmistakably left out. This is "anonymously #2". Because of the fact that I am in no way trying to hide my identity, please feel free to call me Mary. I have been following this site for almost a year now. The other day was the first time I replied to a statement wrote, that wanted input or replies to their blog. I was under the impression this blog was written by a doctor, therapist, or some other physcological educated person. No matter who it was written by I feel I have just as much right to express my feelings and thoughts as everyone else. I am not, nor never have been a hateful, mean spirited person in any way. I would like to take this opportunity to apoligize to anyone that I may have offended, by my feelings. However, in my own defense, many of you have stated how thankful you all are for have found this site if not just for the fact that you can question, voice, express and let go of anxiety, sadness, anger and ect. Why am I being attacked and ridiculed by GALOWA, over and over. Your comments in your numerous blogs Galowa, seem to all come off as total anger. Please if not for yourself then for your mother speak, find help or guidance for your anger...... May God Bless and watch over the both of you,
Hi Everyone, Yeah, its funny how you do baby proof the house. At night before I go to bed I make sure the plug on the garage electric door is pulled out, I hide my mothers shoe's in a safe place, I have a stick in the track of the patio door, lock the screen door in the front door with duct tape. I figure her dexterity is not good enough to pull the tape off or plug the garge door in or pull out the stick in the patio door track etc. She used to sundown about 1 1/2 yrs ago but she is now on Remeron at night and sleeps pretty well. Once in a greattttt while she will get up for a second thinking it is morning & I have to tell her to go back to bed and she does. Otherwise, she is pretty easy to handle. The other day I felt so bad though, I went off because she dropped one her pills again on the kitchen floor. At first I was fine and I got on my knee's looking for it for the 100th time. I found it handed it to her and turned away and she dropped it again, which I never found. That just set me off and I yelled at her and told her she was going to be rooming with her sister that was just put in a nursing home last week. I kept ranting because we have a little cat and if that cat eats one of her pills that will be the end of him. Right now he is my little life saver. I get more communication out of him than my mother during the day. I now realize though when I get mad it also isn't her, it's just the stress and aggavation of so much that has nothing to do with my mother, but it just takes one thing to set you off and then everything in you all comes out. My one friend said something interesting though, she said when you say something to her you feel bad about just remember she has probaley forgotten it within 5-10 min. I told her that is true, but I still remember what I said and I feel bad. She said whatever your saying to her is really just meant for you to release any stress because she really doesn't get what your saying, its to much for her to take in. Its true though because our parents need to be spoken to in small sentences like children for them to comprehend. I forget and sometimes carry on huge conversations with her, telling her things of importance or what I seen on a TV show when she was in bed and I'm going on and on and then I notice she will laugh when I laugh & try to act like she knows what I'm talking about & really doesn't. They make you laugh sometimes though by some of the stuff that comes out of their mouths and its kind of cute but also at times sad. Anyhow, we ALL deserve a million hugs a day for what we do. When my mother broke her hip a couple yrs ago and was in rehab which was actually a nursing home, the head nurse told me that most of the perm. residents only get visits once a month. Some just get a phone call to the nursing station and the adult child will ask how their parent is doing while they are on vacation somewhere and don't even ask to talk to there parent. SO what we are doing as Caregivers is pretty good & like Oreoo said there has to be a place in heaven for us caregivers. Hang in there guys!!
I love Oreoo's idea of an "adopting parent" shower. Really, let's not let this idea pass. When friends and relatives ask what they can do, tell them to hold a shower. When family members don't want to come to help, give them your list of needed "parent shower" items. Actually this is a great way to let people help who are afraid to help inside the home. I will add it to my list of ideas on my Self Care for Caregivers website: www.joygolliver.com.
Dear, Sister, LindaSD! .... Please! Don't go "anonymous!" That's my whole point. YOUR comments about your struggles in your life with your mother were RIGHT ON! ..... In my "rant," I addressed three different postings - one by OREOO, who sent me a prayer... One by an Anonymous poster who thought I was "angry" with the author of the article (when, in fact, I was struck by the naivete of her early caregiving outlook - as compared with how some people feel after even just six months...) ... And a third separate post, by Another Anonymous poster, who implied I was "not caring for my mother" and that maybe my parents shouldn't have had ME, since children are "so much trouble..." I responded to THESE THREE POSTERS, then tried to explain that my ONLY complaint is against THIS DISEASE..... It is so UNLIKE most of the other diseases of old age. At the time we commit to caring for a loved one who has it - I think VERY FEW caregivers really UNDERSTAND the terrible toll it will exact from our lives. I MOURN for ALL OF US who are too WORN DOWN to do as good a job as we want to because "caring for an adult who is losing mental capacity is SO HARD! It is SO MUCH HARDER than (and so much different from) caring for a child (who is at the beginning of DEVELOPING that capacity. EVERY DAY, my mother tells me "I AM FIGHTING FOR MY LIFE...!" As if I, of all people, didn't already know it.... Always, Galowa ....©suzannemcable.2010
High Five Galowa! about 3 months ago I stumbled on this site looking for information, it saved my sanity, I am grateful, my situation is diffcult, but there people who are in worse places, God bless all of us, caregiving has really affected my health, so I made myself make changes to relieve some stress, blogging here is one of them, lets keep encouraging one another, hang tough and love yourself more
Wow - that was quite a rant. Maybe some of us need to think before we hit the Post button. I would post with my logon but since am now afraid of the concequences after the last post, I think I too will stay anonymous. Too bad. We all try to help each other. Sorry anything was taken differently. We all come her not to be judge but for support and to lend helpful comments. I see nothing judgemental and nothing that should have been so personal enough to cause such a horrible reply. And whether you think it was or not your post was terrible. People say things not intended to upset I'm sure you would agree. There have been posts that at first glance in one of my worst than ever moods and horrible daily circumstances that hit me as really wrong. I reconsider and leave it for a day when I can view posts as a simple way we can help each other. Walk away. Sorry anyone takes any of this so badly that it adds to anyone else's stress.
Fellow Commenters...... OREOO, Thank you for your prayer, which was MOST gratefully received...... ANON #1, Ms. Shean has nothing to worry about, as my "anger" was NOT "misdirected," and CERTAINLY not directed at her. If you will kindly "reread" (as carefully as I try to write,) you will realize that my angst is directed ONLY at THE DISEASE ITSELF, my intent being to vent my own personal feelings as a LONGTIME CAREGIVER, when they arose IN RESPONSE to Elizabeth Shean's recounting of HER experiences as a very NEW caregiver...... Anon #2 ...... Your attempted witticism misses the point completely. I AM "taking care of my mother." I don't CARE about wear-and-tear on my house, the "costs," or the "loss of free time," and my UPSET is not even ABOUT my MOTHER. It is ALL about ALZHEIMER'S DISEASE. My point was that ALZHEIMER's DISEASE is not only killing MY MOM, who is afflicted with it... It is killing ME, her caregiver, AS WELL! (And from now on, if you plan to say something which is INTENDED to be SNIDE, or unkind to someone, PLEASE have the courtesy and DECENCY to IDENTIFY YOURSELF when doing so. I personally welcome ALL comments and criticism, but it is nice to know to whom one is speaking when responding to comments such as yours. The use of "Anonymous" to make such comments is a shameful act, and though I PERSONALLY am unaffected by your venom, another community member might be devastated...) (And I sincerely doubt you would want that.) .......... In OVERALL RESPONSE, anyone who has read other postings of mine knows I am predominately optimistic and positive-thinking, with a tireless can-do attitude toward life - AND toward caregiving. I care for a mother who brutalized me all my life - psychologically and physically - (as well as a sister (my mother's favorite child) who is mentally ill, financially dependent upon my mother, and as abusive toward me as my mother was.) I got my mother the medications needed to make her compliant enough to live in my home with my family - a miracle considering her mental/emotional baseline.... LAST NIGHT (before writing my angst-ridden post,) my mother PHYSICALLY ATTACKED ME, mostly kicking and punching, for the first time since 2005 (when she came lunging at me with a boning knife...) The catalyst for her attack last night was NOT that she had lost control of her bowels and soiled her pants without telling me or my husband. Rather, it was our approaching her after we discovered she had taken off the pants, washed them out by hand (leaving residual feces on her bathroom faucet, sink, wall, doorknob, etc.) and then HIDDEN THEM. (We STILL cannot find them.) So last night I NEEDED to vent, and Elizabeth Shean's caregiving blog "just happened" to open my valve! For all you folks who promise me heaven... THANK YOU, I accept, but HERE and NOW, I have two sons and a husband who need me to be at least "OK" while I am on earth. Speaking of which, I DO have a LIFE (of my own,) which, unlived, would dishonor all the forces for good which gave me this life in the first place! So, ALL YOU PERFECT CAREGIVERS OUT THERE (and you know who you think you are,) know NOW that I will NEVER apologize for being what I am - hard-working, tirelessly striving to improve myself and serve others, flawed, good - and HUMAN. ....... Always, Galowa ....©suzannemcable.2010
I have enjoyed reading all of the articles. I am 62 and my husband is 80. He is a wonderful man however he has also been diagnosed with AD during the past year. He is still very functional however I am already feeling very overwhelmed. My life has completely changed. I find that I am totally responsible for everything and I am not sure if I like this. I recently quit my job so that my husband would not be alone so much of the day. I am currently working part time. I find that I have to work or else I don't know if I can make it.
I enjoy these posts so much. I am caring for my 89 year old husband...I am 66. He is so sweet and has been diagnosed with Alhzheimers, but I dont think he really has it because he doesnt do anything strange. He is kind and grateful for everything. The problem is that I am bipolar and suffer awful depressions and find it hard to function when I am in one. It has been a month now. I find myself very irritable and can hardly function. He used to look after me when I hit bottom. So now I have to try and do everything. I am isolating and dont want people to know. His family think he is great and wonder why I dont do more for him! I get a caregiver for 4 hours on Tues and Fri and they give him a shower and take him for a walk. He also goes to a group Mon and Wed. which he loves. So everyone thinks I have lots of free time. But it doesnt feel like it. I feel so trapped. It has been abouut 7 years. I can't work, take a course, go out at night and have lost interest in everything. I just want to sit in my room and either sleep or waste time on the computer in my bed. I cant seem to read a book or even the paper, which I used to do. I am feeling very sorry for myself, but as my friends say, "you knew your were marrying an older man" We have been married 25 years. He was a wonderful husband and our lives were very full. Now no one comes over and I feel very lonely and extremely jealous when I hear about other peoples life. I am judgemental about everything and seem to expect others to know how I am feeling. I cant imagine the future. What I will do with the house etc. He has four children who pop in for an hour or so and then leave after getting him all pumped up and having a drink. Sometimes his son invites him for dinner on Sunday but I don't want to go. Gosh this sounds bleak, but I know I am lucky because he is no trouble really, never taken a pill, sleeps all night, can still read the paper without glasses, but when I hear his can tappping I feel like I am going to have a heartattack...so thanks for this website and for letting me rave on.
I am in the same boat & I lay awake at night worrying how we can cont. living like this. My job closed the doors on 350 of us in 2005 the beginning of the recession. I was going to move to AZ to try and make another life for myself. I then realized just how bad my mother was declining and my older sister was doing absolutely NOTHING to assist her. SHe was more or less taking advantage of her. I decided to take over for awhile and it is now 4 1/2 yrs laters and I turned into her 24/7 caregiver/power of attorney. I have NO income and we are living off her monthly soc. security which is no more than $1119. SHe also has two pensions that amt to $295. The expenses are outragous & I'm worried sick all the time. I also have no med. ins. myself and anytime I feel sick I get worried because if something happens to me she will be put in a nursing home and I know will not make it a few months. Her drs. tell me the care I give her is so great & if it wasn't for me she wouldn't be here now. SHe's on her meds plus I have her on several supplements that the drs. actually believe are keeping her at the level she is at. SHe is also on depends and those are SOOOO expensive. I'm constantly looking for sales for the generic brands. I have been using our credit cards for food etc.and its not good because at the end of the month I can barely make the min. monthly payment. I have NO one to help me at all! The sister that was doing nothing for her tried to screw me 2 1/2 yrs ago by calling the police and lying up a storm by telling them that I was doing the things that she was actually doing to my mother (this way she would get her back & cont. taking advantage of her for my sisters benefit). I live in a town that the police are corrupt and they took her word and I was treated so bad that I still have nightmares. I now have a lawsuit with the village because of it. My sister has since stayed away (thank God) since she created the mess for my reputation. The police found they made a MAJOR mistake but they want to save face so they are trying to get this case dismissed which could ruin my reputation for future work somewhere down the line. I pray and read the bible constantly waiting for some breakthrough in my & my mothers life. I have since been put on the title on my mothers townhouse (when she was still capable of what she wanted) for my safety so no one can just come over and think they can take control of the residence. I want to be able to move out of state (with my mother) To a warm state so I can have some peace of mind each day when I wake up to start my day taking care of my mother. It's a shame though that there is NO help financially out there for caregivers trying to help their elderly parents without putting them in a nursing home. Our Govt is really bad when it comes to things like this. I even have a friend that is out of work also and tried to get medicaid and was told if she didn't have kids she was out of luck. Is there anyone out there that hears us!
My mom and I live together for 10 years now. She is 89 with Stage 2 Alzheimers and I am her only caregiver. When dealing with someone that is incontinent and has dementia there are added costs not covered by any agency or insurance. I am not working due to having to be home with her all day and her income is below $13,000 a year. So to the comments by one post, taking care of parents in the home may not be possible by all people, not because we don't want to but because it is beyond our financial means. Added expenses are Depends (not covered by Medicare and very expensive), ruined carpet from incontinent "accidents", pads to protect all the furniture, extra bedding laundry loads each day, etc. I had to put an auto flusher on the toilet because mom would forget to flush it and then when she did she flooded the bathroom-several times. I am now considering water detection device since she is leaving water running in sinks. Handrails in shower and bathroom were partially paid for by Medicare. Handrails on outside of house and in garage not covered by Medicare. Telephone CallerID and Ringer control so calls don't ring into the house (she was giving out personal info to scam calls). Loss of money on the sale of her new car because she cannot drive. I had to pay for a caregiver to be in the house 12 hours once when I got too sick to take care of mom -that was $176 for 12 hours. New locks on linen closets to lock up all medication. New locks and handles on exit doors (levers) so she could open them (in case of fire). A pay-as-you-go cell phone so I can be reached when I go out to do grocery shopping. It never ends. As she gets worse and our income shrinks, there are more expenses. While it is cheaper than a nursing home, the financial impact is great. There is also the very large impact on my old age -no income and less social security due to quitting work soon. I will be worse off than she is and that is sad. At some point mom will soon have no money and I have no way of paying for the house so I will have to qualify her for Medicaid and put her into a nursing home. Some times these decision are money related but are the only way the parent can be taken care of. We do the best we can and what we can.
The financial devastation created out of caring for a loved one (Mother with AD) can be overwhelming but the choice I made to care for her was an easy one. I have suffered numerous losses in making the decision to be a full time caregiver in her home. The first decision was 7 years ago to be a long distance caregiver. A year and a half ago, I gave up my good job, moved to another state, lost my home, lost my 2 labs and the list goes on and on. I do it because I choose to do it. I have siblings who lives are just fine while mine is in complete chaos. Caregivers are angels sent from above to do the work others would not dare to do! I have vowed to keep her out of a home and will do whatever it takes to do so. So, there is no easy answer, we do what we have to do at the time. No one should be faulted for deciding to give care or not to give care. The only thing I have to add is, if you choose to caregive, please know your life will change immediately on so many levels, emotionally, physically, financially and spiritually. Make the decision with no regrets. God is waiting to reward you~ you may not see it or feel it now but you will reap many benefits someday. God bless to all~
Sure is a good thing your mother and father didn't decide to not have you due to extra costs, wear and tear on their house, and giving up their own free time. What ever happened to familys taking care of familys? Not for money but because they Love them.
Dear Galowa, I'm sorry. I hope you can access some information about ways to give yourself breaks from this stress. I trust Ms. Shean is able to take in your misdirected anger. My mother-in-law took care of her mother for nineteen years--in home for all but the last few. Her mother was sight-impaired and has several mental illnesses. She somehow is able to show me compassion about moving my mother in with dementia although I am only a year into it. I already have bouts of anger and frustration, I also have days I can be grateful for everything my mother can do for herself. I know some day she won't. I don't wish nineteen years on you, but I do hope there are moments when you can take in fully whatever respite you get: time while your mother sleeps, is watching TV peacefully, or is able to say thanks or smile. Some day those might be gone as well.
Hello Everyone, oreoo: There had better be *someplace* (a good place) reserved for caregivers, because from my current position - here on earth - I'm already *IN* HELL... It's been five years for me now, and if I'd "had" another baby instead of my mother - she'd be using the toilet regularly with great success, going on play dates, attending kindergarten, and generally - becoming *more* interesting (*and more independent*) as opposed to *less.* Oh well. Elizabeth: I think it's really cute that you're actually keeping track of "the costs." In no time at all I guarantee that you'll be too tired to keep track of the "costs" of caring for your father, (partly because they'll be so entangled with your own finances that it will be a virtually impossible task,) or you'll be too angry (because, as you'll discover all too soon, no matter how high you count, you can't actually articulate and record all the *real* "costs.") You'll soon realize that "keeping a record of the costs" (or even writing this blog) just adds more fuel to the growing pyre fed by all the impossible demands placed upon your body and mind - a pyre upon which you may one day be tempted to fling your body - if only to end the suffering of what was once your vital, creative MIND. There is a book entitled "The Alzheimer's Survival Guide." A cruel joke by anyone's standards - at least in my opinion. Because no one "survives" ALZHEIMER'S. *NO ONE*. ... the caregivers least of all... Galowa ©suzannemcable.2010
Well, again, you certainly opened my eyes! My Dad has been with us about a week and I had not thought yet about the additional costs. He is certainly eating well, though! My Mom is in acute rehab at a local hospital. We hope to have her home in two weeks. I imagine the costs will be pretty noticeable by then. Dad has lung cancer along with his dementia. It is not curable and the chemo is just barely slowing it down. There are many tough decisions that will need to be made soon, maybe sooner than we are ready for them. Mom is distraught to be in the hospital and not able to take care of Dad. She, however, has two surgeries of her own to consider. She fell on the ice a short time ago and badly broke her right leg and left arm. In addition, she just learned that she also fractured her right wrist. She is beside herself with impatience to get out of rehab, but logically understands it is essential to her regaining independence. My Mom is very clear of thought and is used to being quite active. Fortunately, she participated in regular exercise classes at the Y, so she is doing very well in rehab, just not fast enough for her liking! My wife is a godsend! We are truly blessed by her. She has great knowledge of the local healthcare community as she has worked in that field for 20 years. And, most importantly, she has great patience and understanding that she passes on to all of us. Elizabeth, thank you for your blog! It is interesting to me the support I feel from reading it and the comments of others living with parents with dementia and/or other disabilities.
article is very true to life, it's like adopting a child, my house is now Daddy proofed, a life altering event without the gifts,maybe we should give "adopting parent showers" 16 months later with father who has AD, add to list shower chair, safety rails throughout the house, safety hardward for closet/bedroom/cabinets/laundry room and exterior doors, to keep locked for his own safety, lol also birdbath and birdfeeders, birdfeed, he loves this, came with two dogs, one has since passed away recently, damage the dogs have done to yard, carpet and home, installation of two doggy doors,and gates, extension of outdoor fence for safety, two extra recliners, traded in favorite sports car for more confortable family car, its like adopting a large toddler you can't spank and comes with many displine problems, oh well, it's been a challenge, but it does have it's occ. rewards, surely there is a place reserved for caregivers in heaven