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Go ahead and get it out then smile that no, you arent alone, rori.. welcome to the site!
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I've read your post and comments. I just joined and just by reading this it makes me want to cry. Because I feel I'm not alone. God Bless us all.
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Welcome to the site, onlychild.. it sounds like you've taken on all the worries of the world..calm down and breath...you arent alone in your feelings of guilt. you arent a monster, nor do you sound like one. you sound like someone who needs a little time to themselves. you need to have a talk with your dad and tell him you need help too. ask the social worker if perhaps they can get a companion in for a few hours every week in order for you to get out. i know the feeling of the "what ifs" when you go out. but its what you NEED. start small. you also need to say this to your husband. how about a "guys night" your husband can invite a couple of his friends and they can all play cards or watch football or pat eachother other on the backs for being men while you get out for a bit.. you arent being chicken.. you just dont know any other way at this point.. baby steps.. start small, as i said.. have a family meeting with both your husband and dad together and tell them how you are feeling. if you arent well, as the primary caregiver, no one will be...
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Hi everyone, new here and I am so happy to find this place. The recent months have taken their toll on me emotionally and mentally. I feel completely cut off from my friends (do I still have any) and outside activities with my husband. I started taking care of my dad and stepmother in 2003. Dad has Parkinsons and diabetes. My stepmother had Parkinsons and a selfish disposition. They lived in my home for two years until I moved them back to their home because of the selfish disposition. My stepmother died in 2007 and Dad has been with me in my home now for two years. So all totaled it has been four years in my home, two years in their home with me doing everything for them. Whew! Dad and I have always been close and he is for the most part reasonable and easy to talk to within certain perimeters. My problem is that I resent, yes I said it, resent being trapped. The hospice nurse comes twice a week, the bath aide twice a week, a pharmacy delivery once a week, the social worker once every two weeks and a minister once every two weeks. So when it comes down to it, I have one free day during the week that I can run an errand that is one hour or less and weekends of watching my husband go to sporting events and visiting his friends while I am home making sure that medicine schedules are followed and meals are prepared. Don't get me wrong, my husband is a great guy and he helps me as much as possible. I am the one who insists that he continue with his life because this is my responsibility and I do not want him to feel stifled and resent his situation as I resent mine even though I know that he does. When I read the words that I just typed I sound like a monster. I adore my father. I always have and I always will but I look out the window everyday and I know that there is a world out there that I am not participating in. I feel like my life is passing me by and I am no longer a part of it. If I do stretch my time past an hour, I am on a dead run trying to get home because I am concerned about him being alone or because supper or lunch has to be prepared and medicine has to be dispensed. I am tense and completely unable to relax and enjoy any time that I have away because I know that I must return and pick up where I left off. How wonderful it would be to leave the house at 9:00 am and not return until well past midnight and know that I could do the same tomorrow and the next day if I chose to. It has been so long since I have had any freedom that I have forgotten how it feels to not have to be on duty all the time. Going back to work and having freedom of movement sounds like heaven to me. I keep telling myself that the price of my freedom is the death of my father. It is a high price and one that I do not want to pay. I have told my husband that when my dad gets to where he cannot move, he currently gets around with a walker, that I will have no choice but to put him in a facility that can properly care for him. At times I look forward to that day and I feel so guilty for thinking that. My husband is great about giving me an evening away but as I said, I don't enjoy it as much as I should because I always have this flashing responsibility sign over my head. Unfortunately, there isn't any family here that can help me. As you can see, I am an only child. Dad isn't comfortable with strangers coming in to stay with him so that we could go out together for an extended time. It took quite some time for him to adjust to the "new people" from hospice and at times he still complains about them. I know that the problem is that I am just too "chicken" to do something about the situation because I have never defied my dad. I have read many of the posts on this board and I see that so many of you have it much worse than I do and to you I say God bless you. Thanks for listening.
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sweets
today sucked, thanks for asking but if he don't sleep at night no one will you need that much maybe ask the pharmisict what will help. once they get days and nights mixed up its hard to change. lots of luck
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Hey dare:
Welcome aboard. I do hope that today was a good day for you. I'm afraid to give my dad any more meds than he already takes...I'm afraid it will increase his chance of falling if I give him sleep meds, so I just take it as it comes. If it gets worse or persists, then I'll have to ask the doctor for something. We've got appointments scheduled for both of them on the 26th just for check ups...sometimes I wonder if he's constipated or has an infection or something when he starts acting so differently. I'll get him there sooner if it seems necessary.
This caregiving business isn't for the weak, that's for sure. :0)
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hey sweets
iam new also i got ambiem to try to help, but it only worked some time he never got right. good luck
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It's funny...now I'm okay with Mom, but Dad is driving me nuts...less coping skills with him now. He's been more agitated and up wandering more at night, which directly effects my sleep and makes me less tolerant of stuff. I try to remember that he has no idea what he's doing and that he doesn't do it on purpose, but that doesn't always help.
I'd like to welcome the others that are new as well....isn't this board a God-send? It's just so nice to know that there are others who understand!
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Hi everyone.
I am also new here.
Just hoping to bond with others who will" understand"...somehow knowing you arent the only one going through this type of stuff... is a great relief!

God Bless you all.
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today is my first day and i am apppreciative of everyone who replies i've had it hard just like allof you. i don't know how to offer much support at this time it is not day by day but minute by minute. take a deep breath and try to ask for paitence and strength because that is all i can do.
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Sweets -hang in there the one thing of many I get from this group of people is that there will be good days and bad days and we are always available this lifeline keeps me in balance
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hi ecabell.. has your mom been diagnosed with anything? do you live with her?
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My mother is getting real forgetful. She doesn't want to listen to me and it is hard for me to help her. What can I do?
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I was just re-reading this and some of the other discussions. I don't have alot of time to post, but I just wanted to say thank you and tell you how WONDERFUL it is to be where other people understand!!!!!!!!! Even though our situations vary, the stress of it is certainly across the board. I am so glad to have found this site.
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Hi guys you have no idea how glad i am to have found you!! I had surgery and have been off for three weeks i go back to work next monday.
A friend of mine told me that the elderly lose their ability to filter stuff out, I geuss they kinda get old people "Terets"? Lord my mom has it ! Then she'll be sorry...Lordy Lordy.
Sweets, Gods not punishing you or seeing what kind of load you can carry, this is just "Life" an we all made the decision to care for our parents. So we put our dreams, plans, lives on hold. We decided to do that (my rational) isnt that what the good Lord gave us "choice"?
I think you all are earning feathers for our wings!
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I agree it is hard to determine what degrees of decline are going on when you are there everyday. Yesterday we were supposed to go to the store and bank when I got home from work. She was still in her PJ's said she didn't know I was going to take her??? So I told her I have something to do every night except Friday so she would have to wait until then so she fixes herself something to eat and sits there and falls asleep. How do you deal with this, no communication and when there is she cannot hear, now its her eyes she won't have the cataracts removed. I am going tonight to be hypnotized, so I will stop smoking, My stress crutch, do you think I should ask this fella if he can also fix me so I can handle the stress better? Don't know much about this It is unchartered waters for me but If I don't do something about the stress level at home and at work I am going to drive my car into a brick wall. HELP!
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Thanks again for your comments. To be very brief, Mom is aware of his AD, but does not grasp how to deal with him in any way other than she always has. She plays on the computer all day or reads books, occassionally looking up to see if he's up to something, then yells if he is. Tried to be an example, tried talking to her...it doesn't work. I am the primary caregiver. She will yell at him that he needs underwear on, but doesn't help or get him any. That's my job. I put them on, he takes them off. He changes clothes several times a day. She ignores him until he gets in her way. Adult day care here is an all day thing, and she won't go all day and he doesn't get up in time, and waking him only increases confusion and agitation. Can't just send them for an hour or two...has to be all day. Respite care is $100 locally. No can do. Can't wear an I-pod because I need to hear when I need to jump in. They moved here from FL a year ago to be with me, so no friends or family in the area to help. My friends help me, but no one for her to hang with. Church is helpful, but not enough. And yes, I will miss them when they're gone. I think of that often to help me not be so irritated with her. She does love him...they've just operated this way for 63 years, so it's not going to change now. Thanks again.
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Sweets and Kelley,
Vent away! That is what this wonderful sight is for. Sweets, one day I posted about the noise level of her screeching and Cat posted about how sounds affect our freeze, fight or flight senses. It helped me alot to understand my reaction to her and why I was so worn out that day. No matter what we write about , someone has suggestions, answers and always support. Hope you use this sight to get some relief and some answers. God Bless.
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sweets.. just by your response, I can understand your feelings.. whine all you need to! I'm new to this site also and haven't vented even a margin of what I'm feeling..
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I've tried twice to respond to this with a more detailed explanation of a typical day and what goes on, however it didn't go through either time, so I give up. Maybe it's the Lord's way of telling me to shut up and quit whining. It's all good. Really. Thanks for your comments.
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Sweets, re-directing your Mom when she gets on a roll may offer you temporary relief. Ask her to do some small task while you step in to care for your Dad's needs if that is how you wish to pick up on the personal assisting need for your Dad. There are also day trips for seniors in many areas if your Mom is interested and available to go on a day trip even once a month and has the funds to pay for the trip. It would give you a break. There are also computer classes for seniors. Might she be interested even one day a week? Or get her a computer and let her have at it reading about whatever her little heart desires if her vision can handle it. If not, there are pc accomodations available for individuals with disabilities. She may be increasingly irritated at your Dad's situation because she is increasingly overwhelmed by it and is unable to keep you. She needs respite...and so do you, from time-to-time. What do you think? Tough situation regardless. I agree with Julie that reflecting on how much we will miss our loved ones if they were to die before we do is always a healthy dose of reality. Whatever you decide to do, take it one day at a time to avoid becoming overwhelmed. I care for my Mom only. You have a tall order in your life, so take a deep breath and be kind to yourself. You are terrific to your parents!
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Seems you mother is not aware that your father has Alzheimers and treats him as she always has. Sixty-three years of a habit is hard to break. She just may not understand the nature of his illness. You may have to step in and make sure he has Depends on so that there isn't more work with changing the bed linens.

I have noticed that the elderly decline in chunks. If you are with someone on a regular basis, you may not see the decline as much as someone who sees the person less frequently. I became aware of my aunt's decline when she had a luncheon and invited a number of relatives. I hadn't seen her for a few months and I could see she no longer had the ability to organize a meal, set the table, etc for a larger group of people. You mother may becoming less able to care for your dad. She may not remember anything you're "telling" her. Try writing things down for her in a sequence. Like getting the Depends and helping your dad put them on. Praise or reward her when she succeeds at this.

Is your mother the main caregiver for your dad? Maybe she needs a break? Is there an adult daycare in your area? It is worth the money to give you a break for a few hours. Maybe just having your mom go would be good for her and you. Can any other relatives/friends take your mom to lunch or out for a drive? Sometimes just having a few hours of respite does wonders for our mental state!

As for you, is it possible to use an iPod on days when your mother's voice is particularly annoying? Even ear plugs can block out some of it or put on music. I dare say that there will be a day when your mother's voice will be silent so now is the time to laugh at how annoying her voice is and how much you will miss that voice - or not- once she is no longer with you. Sorry to add guilt but sometimes it helps to just see an annoyance from a different perspective.

I agree you are a saint!

Julie Q
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Sweets59 you are a saint to go what you are going through and it is tough, any way you attempt to handle it. I have one very important thing to say....don't forget to take care our yourself mentally
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