Frustrated

I don't want to be a caretaker anymore...I want my life the way it used to be...I hate my life now... This is not what I signed up for!!!!!!

[Lori56]

I'm so sorry for all the changes taking place in your life Your feeling are ok to have Nobody but another care taker would umderstand I'm not a caretaker but I could relate to things being rip away from your life Your job is so hard and some days you just wish you could go back to the way it was before this dementia but you can't but what you could do is fine a way you can get a break a long break Maybe you could put you love one in respite care Reach out to relatives or friends Don't ever feel guilty or bad about wanting to run away for awhile Once you do you'll want to go back to taking care of you love one for awhile Then you'll want to run away again This will repeat until the end of the dementia journey In the end you find out you were so very strong

[Chuck08]

I hear you. I have been the sole caregiver of my wife of over 50 years. She has multiple medical problems including dementia and heart disease. She is unable to care for herself, is totally incontinent, and has severe emotional up and down swings. Even though I had heart bypass surgery several years ago, I am physical able to and certainly would like to be able to travel and do things other than being a caregiver. Having said all that, I care deeply for my wife and am committed to seeing she gets the best care possible. It is, however, still very stressful and extremely frustrating.

[pkpayne]

Hi Ddcaribe, I have never had to be a caregiver for dementia patient but I was responsible for my mother when it became dangerous for her to live alone. She had her mind and just looking at her you would not know she was sick. But she was on oxygen and because of heart issues and liver issues she wasn't always stable on her feet. There is nobody in this world that I loved more than my mother - other than maybe my husband and children but it was a different kind of love. I have a much younger brother that was still working and he loved her as well but he couldn't do that much for her since he was still employed. My mother didn't have to tell or ask me to do things. She would 'hint' at things she wished would get done and I recognized the 'hint'. My brother didn't but I would tell him if it was something he could do and I couldn't and he would always come through. But it got to a point that it was driving me crazy and I began to resent it taking over my life. I always told her 'you have me to take care of you but who will take care of me'? She would say my brother but I really don't think so unless I give him a real guilt trip about it - and who knows I might. So I think I have some idea of how you feel about the caregiving taking over your life - in addition not even being able to converse cognitively with your 'patient'. I hope that you have friends or family that you can let off steam to or possibly join a group of other caregivers like someone else suggested. My mother has passes away now and I still miss her every single day of my life as she was my very best friend. And I feel guilty about not doing more for her when I could have. I feel selfish about it to this day and today is the day she died - 5 years ago. I think if you could get some breaks that it would give you some relief but I've always thought that nobody ever considered the caregivers enough. They have their own cross to bear and you really need to take care of yourself as well. This is the place to vent however so come here as often as you need to.

[Hidden]

Thank you...my frustration is that my husband who is only 60 and functions independently is starting to show signs...and he knows it....he's ok now Being dx a year ago..,but I guess I'm just scared of what will be in the future...thank you for all ur wise words.

The unknown scares the he'll out of him and I...

[Stephie_girl in reply to Hidden]

Hi. Please know you are not alone. It's natural to feel this way. I've been my mothers caretaker most of my life honestly. She's been legally blind my whole life, and I have helped take care of her for as long as I can remember. 6 years ago she became fully blind and couldn't function on her own anymore. So she move in with me. Now she's been diagnosed with Alzheimer's induced dementia. So now it's not just blindness, it's blindness topped with dementia. How am I going to care for her when I have to work and can't afford to put her in a facility? Im looking into options with her Medicaid, but I understand your feelings. Truly. Just know that you are not alone.

[mamado_62]

Hello.... My father and I have been caretakers for my mom I'm there everyday 6 to 8 he's a day sometimes more my dad is there 24-7 so I give him breaks when he wants them my brothers help when they can, it is a hard job to tend to her needs her questions all day not making it to the bathroom crying all of it gets very frustrating very...but more so heartbreaking my mom was an very hard woman she did everything for us worked..cooked...all of it till last year was diagnosed with dimentia now Alzheimer's I hate that word....but that's what were dealing with and we gotta do it....I no this is my mom and yours is your husband but very similar, like they say you will need breaks take them very much needed, I take mine cause my daughters make me and feel guilty, but back by her side and I wouldn't have it ant other way that's just me....I wish you luck and remember take your breaks it really helps....😊

[Savingfreedom]

Dear Ddcaribe

My husband was diagnosed with stage-4 dementia /early onset Alzheimer's just this summer. It took long time to get him to go in. He is 62 and I am 56. I get angry because this is not the life I was looking forward to either. I ask God to help me cope. So here I am looking for help or even someone to talk to that understands..

[Hidden in reply to Savingfreedom]

Dear saving freedom

Sounds like we are in the same boat...please keep in touch!...I think we are in the mild to moderate range..I guess the unpredictable future scares me the most...I feel like I walk around with a dark clouds over me.

But I'm going to celebrate the holidays, and try not to be depressed.

Happy Holidays to you and all my new friends on this site!!

[Savingfreedom in reply to Hidden]

Dear Ddcribe

I am scared to . Sometimes my husband seems like his old self and then the next minute he is not .So it gets really hard to read him . you might want to ask your doctor about anti anxiety med for yourself to help cop . It has taken the edge off of me so I have so much more patience and understanding with him .I am trying to keep are life as normal( what ever that is) as possible. I hope the holidays go well for you and look forwards to talking with you .

[jasmith49]

Hi, are you a man or woman? If you are a woman and your husband is a Veteran, find a VA hospital and ask for the Next Step Clinic. My husband and our family just recently went through this clinic and they were very helpful. There are many programs that they can set you up with that will take some of the stress off of you. They will also provide in-home service where some one will come and help you learn how to deal with daily frustrations.

As far as not signing up for this, it was part of your marriage vows, in sickness and health, etc. My husband had been my care-giver for ten years, and now it is my turn to be his care-giver. I know it isn't easy. Contact any local Alzheimer's support groups in your area and see about respite care, some one who will come in and give you a break now and then. There are many great support systems out there. My heart goes out to you. God bless.

[Mpeterson53]

I am the person who will need caretakers all too soon. I am 63 and diagnosed with early onset dementia this fall. I am single and without children of my own. So... my sisters are on the hook. I feel incredibly guilty for putting this on them and am trying to make as many decisions for myself before I am not able to anymore and the big decision are dumped in their laps.

I have extracted promises from them to be honest with me about when they need to place me in an assisted living facility. I also have made them promise to not allow feeding tubes, etc. when I am not able to take nutrition orally or if I voluntarily decide to stop eating and drinking.

No one signs up for this disease. If the tables were turned I would grieve just as all of you caregivers out there are. You and your loved one need to be honest with each other and what you feel and what you cannot do. Of course, this will change over time in all likelihood, but at some point the "hardest decision you'll ever make" will be necessary. In the meantime, take respite in your caregiver duties whenever you can. Your loved one would want to do they same if the tables were turned.