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Assisted living facilities offer respite care for up to two weeks (sometimes a month) as a way to "encourage" families to move their loved one. You are under no obligation, so don't be afraid to research this. Also, Comfort Keepers is a fabulous organization: they go to your home, they schedule up to 4-hr sessions, they'll do laundry/housework/meals, and Medicare could pay for part of it.
As many of you know, I have 2 dementia patients. Fortunately my dh is not too bad off, but enough. Mom is still in the NH 100s of miles away. Husband comes up with schemes and problems for me to solve. When they both act up at once is when I am sent over the edge. So yes, most of the time at wit's end.
I am often at my wit's end with caring for my husband who has dementia and Parkinsonism, particularly since he can't be left unattended for even a few minutes due to his poor awareness of danger and the fact that he falls so easily. The few hours a week that I work at my part time job while my husband is at an adult day care program are like a vacation but I don't have any free time for fun things like movies or dinners out with friends unless one of our two children comes to watch their father. I have been sending my husband to a memory care assisted living facility for long weekends on occasion and really enjoy those days but it is a very expensive treat. Most of the time I feel trapped and resentful and I have only been doing this for about 2 years. I think they would have to take me away in a straight jacket if I had to do this for 7 years.
I won't last 7 years. I am so broken-hearted about my husband's dementia and inability to walk more than a few feet, that I just want to run away. I read on here about people have been dealing with this for 10-15 years! I won't last. I'll be dead long before he is.
HI Everyone, Thanks for all of the kind words. Brothers refuse to help financially or otherwise. I have heard hundreds of times "take time off" and " take a vacation, I/we will watch mom". Guess what? It hasn't happened in 7 years, why do they still tell me this when they are out of the picture? No phone calls, letters, Birthday cards, Mother's Day notes, flowers, etc. I feel sad for mom, but then again, she speaks so highly of them and never gives me any praise. She will out live me at this rate for certain! If I can find someone to sit with her it's a. only a short while or b. very expensive! Either way, I have not been on a real vacation in years. If I can get away for a day I must return home the same evening only to endure this care of mom on my own. I would love to get away for a week or two, it's just not going to happen...sigh, oh well, my advice to anyone thinking about moving mom or dad in is "give it a lot of thought" and "are you ready to give up your life entirely", as I have done? There I go again, what a whiner.
I am with you I am in year 9 and maybe in the process of losing it.... However I have no family, spouse or children, and my friend/relationships have all imploded in this living nitemare! I feel I may be close to becoming suicidal....the lonliness is what is killing me...if I had even 1 person, as a constant, other than mother, in my life I think I may have hope but I am so alone idk what to do! So no you are not a whiner, long term caregiving is a soul sucker for sure!!!
Honestly except for a hospital stay I have had maybe about 5 times that I had more than 3 hrs off in the nine years and it has been at least 3 ys since last time.
jujubean, please call the Alzheimer's hotline. They can help you. Their counselors listen, don't judge, and will give you some resources for help. You're recent post is not healthy.
I was in exactly the same position. I too took care of my mother (I'm an only child) for over 7 years. I grew to hate her. I went through every option as well: assisted living and inhome care. She recenty became very ill, the dementia is advancing. She is now moving into an assisted living facility that specializes in dementia and Alzheimer's care. I am constantly feeling guilty. I know every time I visit her, she will cry and scream that she wants to come back home, but this is now impossible, since she needs 24/7 which I cannot provide, and I can't alter my home for a live-in caregiver. I feel as though I'm jumping from the frying pan into the fire. The thoughts that go through my head about my mother make me hate myself as well. I know I will feel exactly the same way after she dies, because I will always feel that I didn't do the right thing. Medical science has discovered ways to prolong our lives, but not the quality of them. In a way, I think this is more of a curse than a blessing.
iobdennis: You are doing the right think for you and your Mom. Please try to find a local support group or other counseling, call the Alzheimer's Association hot line. They can help you work through your feelings. Please don't beat yourself up. We all feel some guilt about what we have done/should have done/could have done/would have done. Vent here, too. It helps! Hang in there! (Funny I tell you that when I, too, feel like I'm coming apart at the seams most times!) Good luck and God bless!
No, you are not a whiner, believe me. Just a loving child stuck w/o help and perservering to provide the best care you can. I am at year 15 and two months caring for my stroke surviving mom and kidney failure dad. After dad's death in 2000 I care for my mom as I am an only child (divorced) with no other family to turn to. In many ways I am lucky because mom is 91, but still tries to manage living alone. I move in for months at a time when she falls and breaks something (four times in the last 4 years), otherwise I go over daily to check on her, run errands, balance checkbook, take her to appointments, and take her out to eat. I have resigned myself to having this be my destiny. No, I can't get away because I can't afford to hire someone to come over while I get away for a break. It did help me to accept this situation and not try and "fight it". Mom's very frail and weak, but her family line lives to be 100 inspite of any health problems, which mom doesn't suffer from. Her heart is good. I go to the supermarket with her and I see other "daughters" taking their elderly loved ones around too. We all have the same expression on our faces, glum and exhausted! I turn 69 next week and my dreams of being able to get away and travel slowly melt away as the years pass me by and my own arthritis and back pain worsen. Take care and good luck1
You are not a whiner-- you are to be cheered! You are truly your mom's hero. Where would she be today if you hadn't stepped in to help her? But you also need to think about yourself, your health and your marriage. Where will *you* be in seven more years? So many caregivers give and give until they have nothing left of themselves. My aunt took care of her husband who had Alzheimer's for years, only accepting help at the very end. Literally the week after his funeral, she finally went to the doctor and found out she had cancer- and it had spread all through her body. She neglected her own health and her own needs for years.
My mom likes to say, "You know that saying 'my cup runneth over?' Well, you can't give from a cup that runneth on empty." It's okay for you to have a break and time to yourself. If your family (other than your husband) won't help, maybe there's a local Family Caregiver Support program (you can search on www.eldercare.gov, an online search engine operated by DHHS- to find local elder care resources). A Family Caregiver Support Program may be able to help you get some respite care, so you can have a break and some time to yourself. This is NOT being selfish--this is giving you a chance to 'refill' your cup.
By no means! How have you done it this long? I brought my mother into my home only 21/2 years ago and have lost it! I don't even recognize the person that I've become-bitter and resentful. I am 65 yrs. old myself. My mother is blessed-no Alzheimer"s.
The more I read these posts about everyone being totally stressed out, ill, depressed, etc., the more I wonder who/what/where/when/why/how we think we have to do this? There has to be some kind of answer for those of us who don't have the money for fancy AL facility or NH as needed. The government wants to regulate everything else in our lives, why not this, too? Sorry for the soap box, but I'm just so upset that even though we all try to support one another here, it simply is not enough. So, so sad.
You know scared I thought the same yesterday... first lemme say I can drive myself absolutely insane with the shudda cudda and wudda's....I live in fear daily that today it will all crash down on me because of them Fear is an evil bitch that runs this game as well..... anyway....
I had two idea's of hope in all this despair, trying to think something good needs to come of this wailing wall forum.... 1) Neighborhood senior care n respite co-op or pools..Where we all rotate or contribute somehow to give each other time off...in each others homes and give our seniors visits with each other they may socialize as well, if they can, but just provide that outlet for us!! In my small community it may be harder but doable and bigger area's be even better??? And the little specifics of the various care n safety issues don't know how that would work???
2) To start/find a thread and or form some kind of group to spread the word, lobby or whatever it is we need to do get this recognized as the epidemic it has and will become....I have been very loosely following AA (alz asscn) posts n news n some other CG sites seeing info on movements like this. Congress n stuff.. I am not well versed in political stuff but would be interesting way to get mind going and feel more empowerment than helplessness....knowledge is power! I If I had my ducks in a row I would start today, but I can barely tie my shoes above keeping ma healthy at this point in the game!!! I feel after what I am living thru I would totally take charge of it if I ever get enuf stability to feel I wont end up living in my car... Maybe we could brainstorm this together/start something!!! The girls around her have been having pleasure parties wink wink, and how that works like a Tupperware party they want guests to book parties. I thought why don't I throw one and combine long term care insurance expo with it too...the only way I would! LTCI is important stuff!!!
And the comments about you all hating and not recocnizing the bitter n resentful people we have become....I couldn't agree more....this is mentally debilitating work with a sad outcome! how could it not wear us down to angry robots! I have a big bowl of bitter n angry for breakfast somedays!! I read something somewhere in a battle between good/bad the beast you feed will be the beast that wins...how ironic with my bowl comment!!! I just learned something!!!
I did not finish my previous comment. My mother is relatively healthy except for HBP (which I, now, have).Every night I pray that the next day will be better. I, also, pray for forgiveness for the feelings I have. The burden of guilt is very heavy. However, we are only human. How much ungratefulness, unkind words, tiring days and nights are we supposed to take? Many of us do this out of love; but even love has its limits and boundaries. There are days when all I want to do is scream, leave and never come back. However, I know that not one of my siblings will care for her. We became care givers because of the kindness and caring in us. It is not an easy or rewarding job; but we did what we thought was right. I still say,"Sometimes the right thing is not the best thing". Sometimes it seems by doing the right thing you are punished. I really don't know. All I continue to do is say "Lord, help me to make it through another day without going completely insane". None of us is alone as long as we have this site. At least we can express ourselves without criticism and judgement. No matter what our human feelings are, we are all good people-strong people. Many can't won't and don't. I have given up on my siblings and just trying to do the best that I can. When the load gets unbearable though it is time tore give it up. How can we help others if we're down and out? If no one else gives you credit, give it to yourself; recognize the good you are doing and you selfworth.
I am a caregiver for my mom. Was for mom and dad until dad passed away 2 and half years ago. I have 4 brothers but their situations will not allow them to help me. My hubby and I are disabled and can not keep up with everything. We need help seriously with all areas of our lives, housekeeping, yard maintenance, financial, medical and getting a break away for some us time. We are lost our home in this ordeal and now leave in an even smaller home and have no room for own belongings much less Mom's belongings. She needs some space for her own well being and to have a sense of at least part of the home being her home. Is there any help out there at all for someone in our situation? Also, I have to keep my requests for help on the down low because I don't want her to feel that she is an imposition on us. We do want her here and want to take care of her but just need some kind of help. Other living arrangements for her are not an option.
Hi Everyone! Thanks for all the wonderful thoughts, care and advice. I do wish that I could place mom in snf for respite 1 or 2 months a year, maybe I wouldn't be so washed up. Siblings don't give a darn. I just had a medical exam yesterday, first one in about 4yrs for me :) Too busy getting mom to Drs. I am hoping for good results but already looks as though I may be heading towards high cholesterol, BP and sugars? Hope not. Anyways, as I read the posts and see some people here that have been caring for their family for 12, 15 &18yrs I am amazed and say God Bless all of you. True Angels. I began caring for mom a month before my wedding, she had her first knee replacement at the time and although I was planning my wedding (only daughter and only marriage) I moved mom into my home for recovery that lasted 30 days. I also took her in another 30 days when she had the second knee done 3yrs later. I moved her into my home in 2006, she doesn't have dementia or AZ, she is mean towards me, always has been, praises her sons, who aren't around?? She has threatened to call the police and have me thrown in jail because I got her dressed and ready for a visit with her grandson & his family that live out of state (they never showed btw) and she insisted I take her back to her room. After 30 minutes I took her to lay back down and to this day she insists that NEVER happened! Anyways, I can't keep her much longer, I have too much to lose (already lost my sanity&freedom) I will have to put her in snf at some point. I have no choice/help. Her insurance doesn't cover respite care and she is 24/7 care. She can't do anything on her own. I feed, bathe, clothe, laundry, meds, brush hair/teeth, change diapers, clean feces from carpet/floors, not to mention all the dressing changes etc. and she doesn't appreciate me. I think she thinks I owe it to her but sadly, she wasn't the best mom....my daughter and husband have sacrificed 7yrs as have I for a woman that takes advantage of us. Thanks for allowing me to vent, I feel better knowing I am not alone. To those in the same boat, I will keep you in my thoughts.
Usedtobhapi you're headed in the right direction, you know what to do. Both you and Mom would be happier with her in NH, she will get the attention she needs and so will you.. Good luck..
I certainly understand your struggle and its not just you, others are experiencing the same things regarding this terrible disease. Luvida Memory Care has been a God sent to me.The guilt has been tremendous,but I can see that it's been the best, the kindest choice for both my dad.
HI. I'm still here, can't believe it's been 6 months since I've logged on? Dang! Where does the time go? Mom has been here 8 long years, I shouldn't complain, but all on my own, it's hard! I've been caring for her on my own since 1995, moved her in my home in 2006. She will say "it's so beautiful outside", as she looks out the window and I will be thinking "I wish I could go outside for even one day"!
used2bhapi......I'm right here with you. My thoughts and prayers go out to you. It's a rought life and I know from experience. I thought spring was going to make a difference for me, but it won't quit snowing and that makes it more depressing!......This is taking it's toll on my sanity and health, but I am the only one to do it, and it has to be done. My husband has to work away during the week 5 and sometimes 6 days, so I really have it all to myself.........I have a friend who is also experiencing the same thing, her mom with alzheimer's and her Dad in ill health, but we don't get to talk about our experiences very much. Wish we had a support group we could attend or something uplifting. ...........I cannot get a thing done because Mom sets in her chair and glares at me. I have so much that needs to be done, but it's NOT happening. If I move around after 5 in the evening, she will set up til midnight watching my every move. If I can get her to bed, then I can get a few things done. By then I am usually to tired!.........I have been at this for 3 1/2 yrs and I am absolutely mentally and physically exhausted. I guess you could say depressed, financially stretched to the end and have NO life. I don't like to complain, because dementia is something Mom can't help, but what do you do when all of a sudden it hits you like a "lead balloon"? I don't even thing spring is going to cure this after our long bad winter. My best to you!!
Before my mother passed I took care of her for 15 years. She lived with me for four of those years. I had caregivers come to the house to help me. I eventually placed her in an Assisted Living facility. It was the best thing I ever did! They had activities and she made friends at the facility. I visited her four days a week. I had peace if mind and she was being taken care of. Luckily, we had the money to soy for Assisted listing . It is not cheap. Praying that you find release. Hug you mother everyday day. I miss my mothers hugs!
I know exactly how you feel. I am the sole caregiver to my Alzheimer suffering mom and my disabled brother who suffered a severe head injury 40 years ago. Each have extremely short term memory. Mom no longer makes sense when she speaks. My brother can't communicate past 3 or 4 words. I often go hours before I hear the sound of my own voice and then it's mostly to ask Mom if she needs to use the bathroom, or tell them both it's time for breakfast, lunch or dinner.
Mom, like yours will often glare and stare at me or my brother. It's scary; but I attempt to ignore it. I too have difficulty trying to get things done. If Mom is not in the same room as me, I need to check up on her every 15 minutes. She can't be trusted. At times, my brother loses his temper with her and I'm continually reminding him that she can't help herself.
As for a life. WTH is that? lol I've been taking care of both for almost 5 years. I have no other family in the city and friends have become scarce. Since I just can't go out whenever anyone else would want, they have all but abandoned me. Even our out of town family no longer bothers to call or email. So, I'm chief cook and bottle washer, actually the ONLY cook and bottle washer. lol
I can still take Mom shopping with me. But I know soon I'll need to get somebody in for those day when I need to run errands. The problem is my brother. He can be left alone for a couple of hours (he's also physically disabled and falls occasionally); but he doesn't want a caregiver to come in. Before Mom was diagnosed, she had a male caregiver come in to stay with him when she needed to go out for a few hours. The first day the man came to the house, my brother went ballistic. The caregiver said he would not return until my brother is willing to accept outside help. That ended that. When I mention getting someone in while I'm out, the look on my brother's face is a definite no way. So, I feel totally stuck between a rock and a mountain.
I could go on and on. I say all this only to tell you, chloesgrams2012, you're not alone. Every person's situation is different. But when it comes right down to it, not really. hugs to you.
Right there with you...I just want a happy heart again. As much as you love the person your taking care of, it becomes a point of resentment of losing your own life. I feel like I have a divided personality..I want to give love but at the same time hold back because of the resentment that wont stop building up inside.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
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Assisted living facilities offer respite care for up to two weeks (sometimes a month) as a way to "encourage" families to move their loved one. You are under no obligation, so don't be afraid to research this. Also, Comfort Keepers is a fabulous organization: they go to your home, they schedule up to 4-hr sessions, they'll do laundry/housework/meals, and Medicare could pay for part of it.
So many caregivers give and give until they have nothing left of themselves. My aunt took care of her husband who had Alzheimer's for years, only accepting help at the very end. Literally the week after his funeral, she finally went to the doctor and found out she had cancer- and it had spread all through her body. She neglected her own health and her own needs for years.
My mom likes to say, "You know that saying 'my cup runneth over?' Well, you can't give from a cup that runneth on empty." It's okay for you to have a break and time to yourself. If your family (other than your husband) won't help, maybe there's a local Family Caregiver Support program (you can search on www.eldercare.gov, an online search engine operated by DHHS- to find local elder care resources). A Family Caregiver Support Program may be able to help you get some respite care, so you can have a break and some time to yourself. This is NOT being selfish--this is giving you a chance to 'refill' your cup.
I had two idea's of hope in all this despair, trying to think something good needs to come of this wailing wall forum....
1) Neighborhood senior care n respite co-op or pools..Where we all rotate or contribute somehow to give each other time off...in each others homes and give our seniors visits with each other they may socialize as well, if they can, but just provide that outlet for us!! In my small community it may be harder but doable and bigger area's be even better??? And the little specifics of the various care n safety issues don't know how that would work???
2) To start/find a thread and or form some kind of group to spread the word, lobby or whatever it is we need to do get this recognized as the epidemic it has and will become....I have been very loosely following AA (alz asscn) posts n news n some other CG sites seeing info on movements like this. Congress n stuff..
I am not well versed in political stuff but would be interesting way to get mind going and feel more empowerment than helplessness....knowledge is power! I If I had my ducks in a row I would start today, but I can barely tie my shoes above keeping ma healthy at this point in the game!!! I feel after what I am living thru I would totally take charge of it if I ever get enuf stability to feel I wont end up living in my car... Maybe we could brainstorm this together/start something!!!
The girls around her have been having pleasure parties wink wink, and how that works like a Tupperware party they want guests to book parties. I thought why don't I throw one and combine long term care insurance expo with it too...the only way I would! LTCI is important stuff!!!
HBP (which I, now, have).Every night I pray that the next day will be better. I, also, pray for forgiveness for the feelings I have. The burden of guilt is very heavy. However, we are only human. How much ungratefulness, unkind words, tiring days and nights are we supposed to take? Many of us do this out of love; but even love has its limits and boundaries. There are days when all I want to do is scream, leave and never come back. However, I know that not one of my siblings will care for her. We became care givers because of the kindness and caring in us. It is not an easy or rewarding job; but we did what we thought was right. I still say,"Sometimes the right thing is not the best thing".
Sometimes it seems by doing the right thing you are punished. I really don't know. All I continue to do is say "Lord, help me to make it through another day without going completely insane". None of us is alone as long as we have this site. At least we can express ourselves without criticism and judgement. No matter what our human feelings are, we are all good people-strong people. Many can't won't and don't. I have given up on my siblings and just trying to do the best that I can. When the load gets unbearable though it is time tore give it up. How can we help others if we're down and out? If no one else gives you credit, give it to yourself; recognize the good you are doing and you selfworth.
Hug you mother everyday day.
I miss my mothers hugs!
I know exactly how you feel. I am the sole caregiver to my Alzheimer suffering mom and my disabled brother who suffered a severe head injury 40 years ago. Each have extremely short term memory. Mom no longer makes sense when she speaks. My brother can't communicate past 3 or 4 words. I often go hours before I hear the sound of my own voice and then it's mostly to ask Mom if she needs to use the bathroom, or tell them both it's time for breakfast, lunch or dinner.
Mom, like yours will often glare and stare at me or my brother. It's scary; but I attempt to ignore it. I too have difficulty trying to get things done. If Mom is not in the same room as me, I need to check up on her every 15 minutes. She can't be trusted. At times, my brother loses his temper with her and I'm continually reminding him that she can't help herself.
As for a life. WTH is that? lol I've been taking care of both for almost 5 years. I have no other family in the city and friends have become scarce. Since I just can't go out whenever anyone else would want, they have all but abandoned me. Even our out of town family no longer bothers to call or email. So, I'm chief cook and bottle washer, actually the ONLY cook and bottle washer. lol
I can still take Mom shopping with me. But I know soon I'll need to get somebody in for those day when I need to run errands. The problem is my brother. He can be left alone for a couple of hours (he's also physically disabled and falls occasionally); but he doesn't want a caregiver to come in. Before Mom was diagnosed, she had a male caregiver come in to stay with him when she needed to go out for a few hours. The first day the man came to the house, my brother went ballistic. The caregiver said he would not return until my brother is willing to accept outside help. That ended that. When I mention getting someone in while I'm out, the look on my brother's face is a definite no way. So, I feel totally stuck between a rock and a mountain.
I could go on and on. I say all this only to tell you, chloesgrams2012, you're not alone. Every person's situation is different. But when it comes right down to it, not really. hugs to you.