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It is exhausting D... Give yourself the much needed love you give to your mother... (when you can)... (((Big Hug!)))
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My husband has been under the care of hospice for one year and the roller coaster ride is killing me. I never know from one day to the next if this is the day and, even worse, I don't know how I feel about it. He's no longer the man I married and yet I took these vows. Every now and then he's in there but more often than not, it's changing dirty depends and sheets, and cleaning carpets. Sometimes I wonder what I've done to make God punish me so and yet I know God doesn't punish. I just miss him so much....
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Heart2Heart,
Well I did it. I spent my last day with the little lady I care for. I just can't handle dealing with two in the same mental status. Mom has definately gotten much worse in the last couple weeks with her memory, I kept hoping it was just a bad week but it isn't changing. I think it's fair to say her dementia is progressing. Memory as big as a minute or so, no recollection of recent events, I am really worried. So here I stand at the crossroads, wondering whether it is safe under these new circumstances that she be left alone for a few hours while I work? I just had a talk with her sister, she told me just to watch and see then, make a decision. *sighs*
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H2H, forgot to also tell you while I spoke to Mom's sister today, I told her "No More Greeting Cards!" No sending, no giving, it's over! She said she totally understands under the circumstances so thankfully I got that over with too. Since I do not speak to anyone else in the family, I asked she pass that info along to everyone else.
🤗🤗🤗🤗🤗 👍👍👍👍👍👍👍 No more darn cards!!!! Yippee to be free of that dreaded responsibility!
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Awesome Rainey!... I think you have done all anyone could possibly do in your situation... Actually, you have done well above and beyond what anyone would or could possibly have done (or do)! I think God is now giving you extra time to spend with your mother, though this rough patch... I never thought I'd be where I am now with my mother... and, choosing to not work a full time job to have more time with her.... I got a part time job... Which gets me out long enough and only 5 mins from the house in case I need to run home... We're not Super human beings... we just do out best... I'm SO proud of you!
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Yeah, two less stresses is better than none! I am feeling slightly more relieved except when I came home to tell Mom I was not going to continue with my little lady. Then, around and round on the carousel we went until I just realized it just isn't worth continuing the conversation. I needed desperately to speak with her sister, whom is still working as a nurse in a convelecent facility and the only level headed family member I have left. Thankfully she called back and even though she could not give any concrete advice, I felt better after speaking to her. Apparently, Mom's other sister has dementia now too!!!!! I am not liking my odds now.
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I am coping by waiting all day for darkness and sleep. My mother refuses to run the air conditioner because she is too miserly to pay for it. And we live in the extreme heat of southern Alabama. I haven't the money to pay for it myself. I feel like I am a child again, living for the day when I will leave this unhappy home. Tomorrow will be the same. My life is empty, lonely, and extremely uncomfortable in this heat.
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NoRecess, you can do what I do -- tell my mother that I won't be able to stay if we don't compromise on the AC. It is true. If she wouldn't run the AC, I wouldn't be able to stay. I know that she would have to go to a NH even though she says she could make it without me. I think she also knows she needs me, because she relents on the AC. I do not believe in caregivers having to physically suffer. They are as important as the person they care for.
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Thanks for sharing your experience, JessieBelle. I appreciate your reply more than you know. Thanks to everyone for your replies. I feel there is no hope much of the time, but your replies help me remember that there is always hope.
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I know. It is never ending if you live with them 24/7. It just goes on and and on. This site helps so much. So many nice , informed caring people.
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I do caregiving for my 2nd wife of 17 years only to have her not know me most of the time. She introduces me has her good friend who cares for her because her husband left and didn't tell her where he was going. So now I just smile at her and tell her that we should get married because I'm with her all the time anyway. I have also hired a caregiver for 4 hours a day 3 or 4 days each afternoon. I run errands and decompress. I used to get hurt but now I understand it's not her but the illness. I gotta laugh before I cry. I also know God is still driving the bus. Sometimes we're in the smoke and other times looking out the windshield. : ))
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You sound like a gem, Carerick. I love how you answer your wife.
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NoRecess, I understand about feeling like a child again. I feel like I'm about seven years old living with my Dad. He still rules the castle, especially the air conditioner which he can't get enough of. It's in the 90's outside and I am wearing wool and a polarfleece jacket in here just to try to be able to move my frozen joints. I love him, but he never has been able to comprehend the concept of compromise, nor has my only sister who I will be taking care of through her upcoming extreme cancer surgery and treatment. Also trying to take care of a long time friend who has not been able to walk after his 3rd failed knee replacement and foot surgery. Somebody is always feeling neglected and I am always feeling guilty about it. It's hard when there is only one of you. I hope you can somehow get away and have some time for yourself. Maybe an air conditioned movie theater or a "meetup" group? A therapist reminded me that even though we do our best to take care of them, no one life is worth more than another including ours.
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I like you last quote from the therapist Chandra "...even though we do our best to take care of them, no one life is worth more than another including ours". So much of the time when we're caregiving, we forget ourselves and how valuable our life is (I'm guilty of this also).
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Ben & Jerry's
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I am tired. The assisted living mom was in said she was a health risk and to find her another place after 4 hospital er visits. Took her home at hubby's suggestion. Had full time aides. She hated them. Now in daycare hopefully 3 days a week. She is 90 and I have been watching over her my whole life. Only child. I scream I cry, I wait. Now hubby wants her to go to a home as her dementia is getting worse everyday. Her devoted friends rarely call. My childhood of picking up her drunk butt hits me all the time. I just want my life back.Just tired...
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Before I'm sorry. I repeat myself a lot here by saying we are all pretty much in the same spot and just know you aren't alone. People all over the country and world are going through this too.
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I think all of us have such different experiences based on the degree of issues that the aged person we are caring for has. I've only had my mom 24/7 for a year and my emotions have been all over the place. She came to live with me after my father passed away last year. She had been living in a nursing home for three years but she was in another state, so I moved her in with me. The nursing homes where I live are not very nice. To keep my sanity, I have someone come one day a week to give me a break and I always try to go do something I enjoy. I don't have any siblings but my husband and son are very good about sitting with her if I have to go run errands when they get home from work. I think it is essential to try to get at least one day to yourself. Even just taking time to do something you enjoy like reading or a TV show after they go to bed or before they wake up. Make sure that you stay connected with your friends. I take my mom out to lunch almost every day with a friend. Just getting out of the house for a little while makes me feel like I'm not a prisoner in my home. Fortunately for me, even though she has dementia she doesn't act out. She hardly ever talks and she's in a wheelchair. I consider myself blessed that she isn't demanding like I've heard some people mention. I sometimes do feel like my life is passing me by and I'm never going to get to do anything on my bucket list. I try hard not to get resentful because I know that she can't help the condition that she's in and one day I will probably be in the same place that she's in. I hope not for my son's sake because he is also the only child. Just try to make a little time for yourself, don't feel guilty for feeling trapped or resentful (all of us do at some time) and remember that you're doing the best that you can. Call Elder Services in your area and see if you qualify for respite care. Good luck to you!
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I don't know how to handle taking care of my mom. The other day I took her to a deli she wanted to go and she seemed happy about it.But a day ago I was taking care of something in the old neighbor Hood she use to live and she wanted me to take her to another deli and I told her we already got ure food the other day and I don't want to stay here in this area to long. And she started pouting and say you don't care about what I want and she didn't talk to me all night and giving me hard time about it.Her moods change to much and it's driving me up the wall.How do you handle this. I can't always make her happy why she can't understand this. If she doesn't get her way she acts like the world is ending.
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I actually just started. My brother and I were no longer able to afford to keep our mother in assisted living. She literally just moved in with my husband and I yesterday. I feel fortunate to have such a generous and patient husband to help me in this. But it is quite overwhelming. My mother is both deaf and partially blind, so communication with her is difficult sometimes to make her fully understand the situation. Plus, she has great difficulty with stairs of which our home has a lot, because of arthritis and a very bad hip. We think her short-term memory is borderline starting to fail. First night was hard for her to adjust, plus our home is not well suited for someone with her kinds of needs. But we really had no other choice because cost of ALFs are so expensive. They gave me her medications list, which I am still trying to figure out the schedule of it.

This really has to be temporary thing because my husband and I want to start a family and I don't feel I its feasible to do that and care for my mother and do my full time job. But my husband has been good about reassuring me that we can't be intimidated by the extra stuff we have to do to keep her safe, and help her to feel more at home. And my brother is fully helping us with expenses and he'll be around to help with his fair share of expenses, that's reassuring as well.
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What about Medicaid? She really needs to be in a home. Stairs are not good and the work load only gets harder. You are ready to start a family. Your mom would want that.
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I don't know how I am doing this. My mother hallucinates, and she wanders around the apartment (it's small) and gets lost. Yesterday night I took her back to her room four times. She is being treated for the psychosis but nothing works. She is also in pain and the doctor can't manage that either. She hates taking pills, and can't take opioids because they make her delusions worse. My father, on the other hand, who is older, has all his marbles, but he's pretty deaf. He is also in pain and won't take even an aspirin for it. He also won't wear his hearing-aids, bathe or take his medication unless he feels like it, sulks if he doesn't get his favorite foods every day, and bullies my mother and me. They are safe and as comfortable as I can keep them. They have good medical care. I live with them, manage their finances (they live on their SS), do the housework, laundry, cooking, and shopping. I bathe my mom and my dad when he lets me. I can't work outside the home any more; my mom especially loses her references to reality when I'm not there. My sister helps out a lot, but she can't give me a day off because of her own responsibilities. We can't afford an elder-sitter. I'm just caught. I have almost no income of my own, I've had one day off since New Year's (I was "allowed" to visit my daughter who lives about an hour away on Mother's Day, on the condition that I was home by dinner time.) I've been doing this for years and it's getting worse. I'm not even good at it, and I'm really unhappy. It's just there's no one else.
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Hi Zenlaundry. I'm really sorry about your situation. I'll ask you the same I'm asking myself. What would our parents be doing now , who would be taking care of them if we were never born? There has to be help . Some one mentioned AAA. ( no automobile related ). This agency apparently provides assistance. My mom isn't a fraction as sick as your parents , and I get overwhelmed a lot. Good luck and take more time for yourself.
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Burnout alert!!!!
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What's happening Patty?
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Frustrating, just frustrating. My Wife has dementia. SShhh, she is unaware of that. I couldn't figure out why she couldn't pass her written test to renew her Drivers License, she always passed with flying colors. Bragging about only missing 1 or 2 questions. This hasn't deterred her from driving though. She would still drive down to the corner insisting she would go a block and that's all. One particular morning she was up early and said she'd be right back and that's when I got the call. We live in a Mobilehome Park and the front office called saying my wife had gotten in an accident leaving the park. No one was injured, fortunately, but our car which I had paid off, was totaled. She had always been careful when leaving the park, but when talking to a witness they said she, my wife, pulled right out in front of oncoming traffic. I tried talking to her but she just continued putting the blame on the other driver. Looking in her hand I saw what looked like a ticket, it was. After driving her to court it turned out to be a $900.00 ticket. On the way home she argued with me that she didn't get a ticket, for what she said. So when we got home I pulled it out of her purse, showed her and put in a place where she couldn't find it. Later on that day I looked where she keeps her mail and found letters from her Dr. saying he was having her license taken away due to her taking a certain test and failing it badly. It was dated more than a month earlier. Later on the same day my wife got into her accident I received a letter from my insurance co., this was after the accident. They informed me that my wife was no longer going to be covered. I had quite the discussion with them when I called. I found other info. from her Dr. regarding her dementia, everything pertinent to Dementia was kept in a place where I couldn't see it without looking. Yet still to this day she doesn't have dementia. I am never heard, have to answer the same questions over and over again. I do the shopping, the cooking, I do all the driving and our little Brie, spaniel/russell mix, has IVDD and just had surgery, so she needs crate rest for 6 weeks, and is paralyzed in her rear section. That means she can't walk and her bladder has to be expressed (helped to pee). This is a lot of work and staying up, being as she has to be expressed every 3 hrs. while on her medicine. My wife can't help me at all, she just can't. I mean she woke me up the other morning holding the remote for our TV in her hand and asked "What's this I'm trying to phone my daughter". But nothing is wrong with her. She says she's just getting older. When I said frustrated did I also include tired. But what am I going to do? I Love them both.
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BlueMoon, when they don't recognize or won't admit they have dementia, it makes it all a lot more difficult. We can't say that something is because of the dementia because it just makes them mad. My mother will yell at me that nothing is wrong with her and that it is me who's the problem. It is very tiring.

I don't know how much is purposeful. People say those with dementia don't know they're doing certain things. In my mother's case, I know she is aware of some things. For example, my mother is diabetic and knows she shouldn't eat too many sugar-free cookies. Sometimes when I come in the room she has two hands with cookies in them. She'll try to hide them from me. Yesterday she even sat on two of them to hide them. I don't get on to her severely or anything, it is just that she still knows she's doing something she isn't supposed to, so she hides it. Of course, she'll deny it, even as she is sitting on cookies.

I have a feeling that your wife figured she'd fix all the problems later and didn't want you to know, so she hid things. It is like a child's response -- hiding a bad report card -- instead of working things through like an adult. Unfortunately, the problem doesn't go away even when hidden. I'm glad you love her. I know it is going to be rough for you. Good luck!
(6)
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It's so comforting and yet terribly sad to hear that I'm not alone with my suffering. I too have thought about suicide but I have such a wonderful partner I stay alive because of him. I don't know what I'd do without him. I just hope we get free soon enough to enjoy this incredible gift we've been given - the gift of each other. Right now we can barely do anything to enjoy life and each other. This is a horrible life and I resent the h*ll out of my mother for not caring about me more than she does. I fantasize about the day she dies and I think about how I will tell my worthless brother that he is now dead to me too. He does nothing to help and what makes it worse is that my mother defends him! I hate him so much for not only abandoning me but for trivializing my negative feelings about my situation. The caregiving situation in this country has become epidemic - something needs to be done.
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It's exhausting & i honestly didn't think I could do this....its taken an emotional toll on me &my son. Even my siblings are impressed with me. I'm bipolar so I have my own issues but bonding with my mom showed me I can do this if she can prove them wrong. I'm the youngest so basically everything fell on me cuz "It was my fault she got sick"..long story..but I'm getting it done.
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Pumpkin93, I sure do feel for you. It would be nice if you could get some kind of help from homecare people from your health provider. It is not right that you have to take on this responsibility by yourself. Think of what your Mom would have liked if she was in her right mind. I know my Mom said she didn't want any of her children to take care of her but to put her in a home. She was able to stay at home though with the help of home care workers coming in 3 and then 4 times a day. My father was able to help her during the other times of the day but was not able to give her medication and proper meals. My Mom has recently passed away, but my father's dementia has increased, and will need more help. I am staying with him for the time being, but realize that is not a job I can do on my own. It is mostly the emotional stress that is difficult although I love my father dearly, but I am blessed that he very pleasant and kind.
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