Reaching Out to Caregivers like Me

Dear Islandgirl38,
I know exactly how you feel because I am in the exact same situation. My Mom has advancing dementia and is progressing by the week/month. It hurts so much to see her deteriorate before my eyes and sometimes I feel like I am in a hole that I will never get out of. But I have learned so much about myself, my life, my mistakes, my triompths, my relationship with the Lord through pain and hardship that I would never have learned without taking care of Mom and Dad for two years. Dad just passed away 3 months ago, and Mom was diagnosed with terminal cancer that had migrated into her lungs after a cancerous tumor was found in her colon that had to be removed. So this year has been the hardest and most stressful year of my entire life. A great learning one, but very, very, hard lessons about life from all the pain. If there was another way I'm sure I would choose that easier route, but unfortunately there wasn't. The mixed feelings are normal. We/ or I, was just thrown into this position without any training, guidance or advice, and I've made countless mistakes in the beginning and am still making mistakes, but not as bad as at first. I just joined this forum and the people here has helped me greatly. Not just a place to get advice, but a place to vent frustrations and anger, and anything else. No one who has not been a caregiver to parents will ever understand what its like unless they are in the thick of it no matter how much you try to explain things to them. It's just out of their realm of experience/daily life, etc.. If they had to do it for one month, that's the only way they could possibly understand. But I truly doubt if they would even want to do it. So the people here all understand what we are going through perfectly and I hope you will keep coming back as I am doing. God Bless you!!!

I also felt guilty but it was my husbands idea because he would go to bed and leave her up with me and he realized that we needed to make that time for us so he started it and thank god, it is really a good thing because it gives me a chance to unwind and just be with him.......it's funny how you adapt and come up with different ideas....you just never know what will work...Talk again soon....

Heidi,
I had to laugh because we also pretend to go to bed around 9 or 10 so my mom will go to bed. We will usually get to watch the news and get a chance to talk. I don't like talking about her when she is around so we save it until she goes to bed. I was so gald to hear you say that because I felt so guilty. It's the only time we have anymore to ourselves.....lol!!

P.S. I found another site that I like because you can chat and send email and such it is eons.com and I joined the caregivers group, you should check it out!!!!

Hi phyllis, so far we are lucky in the aspect that when people ask jane how she is she says she's in good hands....She thanks us all the time for taking her in. My husband keeps me sane as well, he is so thankful that I was able to stay home with his mom and he is very good about trying to give me time for myself. We don't get much time together alone and that I miss most. I know it may sound awful but at 10pm every night we pretent we are going to bed so we can get his mom to go because she won't go by herself even if she is tired. This seems to work and it gives us a little alone time. She has also been getting up late at night so I stay up until about 1am so I can get her back in bed. It makes for along day but I need to make sure she is safe. I did by a book as well when I knew she was coming and it was very informative, plus I worked in a nursing home as well on the alzheimer's ward and only lasted a year I because I was getting to close to my residents and also had a hard time with the treatment these wonderful people were subjected too..So it did help me for this time with my mom in law..I just keep going one day at a time.......Thanks so much for your comments they mean the world to me it makes me feel a little more connected with the outside world..
Heidi

Islandgirl........
My mom obsesses about things. She doesn't like chocolate but if she sees it sitting, she'll eat it. I keep a lot of finger foods sitting around because she doesn't eat much at meals. Her doctor says right now as long as she is eating, thats' what counts. At this stage anything is good. She doesn't drink much either and has been hospitalized several times because of dehydration. Again, I just keep glasses of Ensure, water, juice sitting around the kitchen because she will pick it up and take a bite or drink. That's about all you can do. She tells people we mistreat her and has actually caused senior abuse people to come out. She says we lock her in the basement, won't feed her, won't take her to the doctor or any where. She doesn't realize we are trying to keep her home and out of a nursing home. It is very hard but, again all you can do is take it one minute to the next. Thank God for my husband. He keeps me sane. Otherwise I think I would be in the nut house.....lol!! I don't slep much anymore because she is up most of the night. She doesn't reall know day and night much. These are all normal. If you can, go to the library and get "The 36 Hour Day". It is a great book about Alzhiemers. It puts it in perspective and really hits the desease. I was amazed at how my mom does everthing the book says she will. Take care of yourself. I know it's hard. I'm going thru the same things and it helps to know that.........Phyllis

Thank you pkpurs for your comments and support. I know we will get through this it's just some days are harder than others. I've had my mom in law tell me that I have taken away all her rights and that she is angry because she doesn't even get her own ss check.(my father in law keeps it) I just stay calm and explain that we have no control over that and we are just trying to keep her with us and out of a home. Some days are better than others. Do you find that people with alzheimers seem to binge on certain things? She won't eat much dinner says she's not hungry but then she'll eat 6 or 7 cookies right after. And she loves chocolate so I try to buy her some but I get concerned because she'll eat the whole bag. I like seeing her enjoy it but then she'll have problems with her stomach. She also is very picky on what she drinks she'll have oj in am then its (wine) for rest of day. Not really wine we finally got her drinking cranberry juice which she thinks is her wine. She won't even drink water and it concerns me. She does well at check ups but that's just a 10 minute how are you feeling session and its hard because I have a hard time asking questions when she's right there I try to let her answer all the questions because I don't want her to feel like she is a child. But then if I call her doctor after its hard getting hold of her.

Islandgirl............hang in there. I also quit my job to be full time caregiver for my mother. She is in tha last stages of Alzhiemers and is very hard to handle. She does well with others but not with me. We can't get any help with expenses. We pay for her to go 2 days a week adult day care and that is when I clean her room and wash her clothes because she allows no one in her room because we steal everything from her. I would like to have someone come in onch a week for bathing but we can't afford it. $20 an hour, 4 hour min is the cheapest we have found. I check this site every day and it helps to read and write my feelings........good luck to you. You are a wonderful person.........remember that..........Phyllis

My husband is wonderful to me and his mom, he knows it is hard for me during the day with the isolation. Unfortunately i get paid by the state to take care of her and they have strict guidelines about her going outside for care or even having someone come in. I don try to get out at night even to go to store but then I feel guilty and hurry back. What's really sad is her family and mine have seemed to abandoned us, her own husband lives states away with his sister and says he will probably never see her again. I think my family doesn't understand the stress or feelings i am having. They get upset because we haven't gone to family functions but unfortunately my family is very big and when they get together it is extremely loud and my mother in law can't handle that so we have to decline.

Hi:

I am sure you will find others here that share your issues. I have seen many posts that have helped me learn a lot about caring for my husband. But even more, somehow knowing that there are others out there that share your issues with Alzheimer's and becoming a full time caregiver will give you an outlet. I think Alzheimer's has to be one of the most difficult diseases to deal with since it is progressive and you see people degenerating before your eyes. It's so sad. And you think they would appreciate your help, but often they can become beligerant.

When you first leave you job to stay home to do this, you feel like you are doing what's right. But for someone who has worked a long time, it can be isolating. The fulfillment you got from work is quite different. Have you spoken with your husbnd about your feelings? I would also suggest that you might consider a middle ground where you obtain some adult day care part of the time. It will let you get out and about.

I wish you the best.