Guilty of becoming a reluctant caregiver

Discussion in 'Caregivers' started by Strsd, Feb 4, 2004.

  1. Strsd

    Strsd New Member

    My Mom has AD and is getting increasingly hard to deal with.I wish nobody had to deal with this disease but it's nice to know that there are people somewhere that understand how I feel. My Mom's symptoms seem to have started the night I got married (coincidence?) It was the first time she fell and she's been doing it ever since. She has recently been having hallucinations and I have an appointment scheduled with her doctor but would like to know if this is normal for AD? Even when I show her that what she thinks is there, is in fact, not there, she gets angry at me and thinks I'm lying to her. She has lived in our guesthouse since August of last year. I do all her cooking since she tried to burn the guesthouse down with the microwave (did you know that that could happen?) I sure didn't. All she wants to do is watch tv, eat a little, and sleep alot. She stays mad at me about 75% of the time and I'm so stressed out that it's affecting everything in my life. I used to be easygoing, happy, smiley. Now I spend alot of time crying or trying not to cry. There are no support groups in my area and none of my friends are in the same situation. No one can understand unless you live with it too. I'm glad I found all of you.
  2. tom-r

    tom-r New Member

    have been put on the board like what you are going through. Some of them are wanting to know what to do, and others talk about how good it was to have put their loved one in assisted living.

    The ones that I had read made the choice to go along with the assisted living and were suprised by the reaction of their loved one. It was a positive reaction once they saw that they were able to be with others that they could participate in activities together that were their own age.

    It would pay to check into these things and find a nice place for her to live. It sounds pretty much like your situation is only going to get worse if nothing is done, good luck Tom
  3. tom-r

    tom-r New Member

    First of all if you didn't care about your Mom you wouldn't feel guilty. That is why you look around and find a nice assisted living place for your Mother, some place she will be well cared for. Then you know that there will be people around to look in on her and help her when needed.

    Reluctant means that you are or will be treating her out of frustration and resentment, if that is the case then she would be better off somewhere else and you would be better if she were somewhere else.

    Food for thought, Tom
  4. paintergal

    paintergal New Member

    A big oops, here. I re-read my post to you and noticed a typo and hit delete instead of edit when I tried to correct it. That's the second time I've done that with a post. I'm sorry.

    Anyway, my thoughts are with you. Hey, have you ever thought of using another username instead of Strsd? I know it may sound silly, but sometimes we become what we call ourselves. Maybe a more uplifting name like Dooinbetter. lol.

    Good luck.

  5. PVLady

    PVLady New Member

    You may have already done what I am suggesting, but I will say it anyway.

    It really sounds like you should look for an assisted living place for your mom. This is way too much for you, and your mom will be better off also.

    I have an elderly lady I look after who has AD and she was started on Aracept. That really made an improvement in her thinking.

    She is currently residing in an assisted living facility and they are great with her. It is ALOT of work to be responsible for someone with AD.

    She gets so much care there, one person could never provide that level of care alone. I really commend people who work in the place, they are wonderful with the elderly.

    Also, my own mother is in the same place, (two doors down from my friend Alice) and she loves the place also.

    My mom had all the opportunity to live with me, or go back to her home with a live in companion. She told me, she would never do that because she does not want the isolation ever again. She enjoys all the people, and the other senior friends she has met. I have to say, it was a complete surprise to me how happy my mom is.

    I actually waited two years to sell my mom's house in case she wanted to return home. She is age 88.

    At the assisted living, I decorated my mom's room with her own things. She has cable TV, phone, fridge, attached bathroom, walk in closet, balcony with a view.

    There are plenty of conveniences (hairdresser on Thursday, podiatrist once a month etc) for seniors and anytime night or day, all she has to do in ring the bell for someone to help her.

    In my mom's case, she has severe back pain, so she prefers to eat all her meals in her room. Alice, on the other hand, loves to go to the dining room with the other ladies.

    I guess I am saying to see the big picture, you have options, and sometimes everyone is better off if you let your mom live in a place where she will receive full time care. You just cannot possibly give her what she needs alone.

    If your mom has any funds, I say the money could not be spent in a better place. I am sure you and she will be alot happier.

    Lastly, your mom should have a complete physical to make sure there is not something else wrong with her.

    Alice was so confused when I plucked her from her house. She was a sad case. She is blind, arthritic, was severely malnourished, not taking any meds, dirty clothes, dirty house, very anemic.

    I tried to get her to go to a place for two years. She would tell me she had no money. I called her all the time, and took food. Finally, I called Adult Protective Services and they immediately got a nursing home bed for her, thinking she would be on Medi Cal.

    When I went to pick up Alice, she let me know she had money, so I took her where my mom is. It was a rough year getting her health back (she is 90) but I am happy to say, today she is great. A really sweet lady.

    She was so sick, she had to have two blood transfusions.

    The worst part of Alice, is she has a daughter, (only child) who is 3 yrs older than me. She just moved out of the state without even telling her mom. She lives in MO.

    I do not judge her, I don't know what to think. I do talk to her on the phone and I asked her why she left her mom all alone, she acted like she just does not care, and her mom really does not understand.

    So I will vent one more thing here while I am on the subject. Alice has a niece in Texas who called all frantic, asking "where is aunt Alice".

    After explaining everything to her, she said, well, I will take aunt Alice, and have her live in a home near me, and her living sister, also in Texas. She went on to say what a good Christian she was, and how the minister was at her house every Sunday, and she was so involved in all the church activities.

    So I said ok. I checked out some places and found a nice place near the niece. When I called her back, she sent me an email with two pages of why she changed her mind. She had travel plans, fibromyalgia, quilting bee, on and on.

    I mean it was not like Alice would be living at her house. I said nothing. Actually, I care very much for Alice, and would hesitate to send her there anyway.

    I hope you have some options with your mom. If you can swing it financially don't feel guilty to have her in a home, believe me, she will be better off. You can always call her or go visit.

    Take care

    [This Message was Edited on 03/15/2004]
  6. Strsd

    Strsd New Member

    I appreciate the advice and am setting up a trial visit for my mom when my husband and I go to Florida in May. She may not like the first one she tries but there are quite a few assisted living apartments in our area. She said she would rather do that than have my sister try and take care of her.
    The last time she went to the doctor they did blood work and urinalysis and the only thing they found was a UTI. She was put on antibiotics and is feeling better. He also changed her meds a little and that seemed to help also. I asked him about Aricept and a few other newer drugs but because of her chronic medical problems, he said they would not be right for her. She takes Exelon and Lexapro now. I know that probably in the next year or so, I'm going to have to make the decision to get her into assisted living but I'm going to let her visit a few beforehand so she can feel like she made the decision herself. She hates to be bossed around:) Thanks for taking the time to write. You sound like a very nice person with a kind heart. Your mom and Alice are very lucky to have you!

    MRSBAJ New Member

    My husband has non-alzheimer's dementia. We are older parents and have a 13 year old daughter - only child. Last summer, my daughter and I felt as though we were on house arrest! We could not leave my husband alone and could not always take him everywhere. We sought respite care and ended up taking the room on a permanent basis. They work with us and we use it for parts of days, all day, or for several days, as we need to. However, I still would rather have my husband at home and he would rather be here, but at a cost of $3,000 a month, I could not have the flexibility that we have nor the care and coverage for that price at home. My husband is a disabled physician, which makes this more difficult for him. I think women may adjust to such settings better than men, but I don't know. There are more women and they are much older than my husband, as he developed this in his 50's. I hate this disease so much. Anyway, seek out the assisted living facility. I had to for the sake of my daughter and myself. My husband is home more than he is at the facility, but it has been a God send and a life saver for us. I still go through the guilt about every 3 weeks of wondering if there is anyway I can obtain care for him at home, but the cost and the difficulty of scheduling and the shopping for food and the worry about what if the caretaker got sick and couldn't come, etc., etc., etc., until I come back to the conclusion that this is the best I can find, right now. I wish you the best of luck and hope that your mom makes a wonderful adjustment to it on a full time basis! God bless!!!!
  8. Strsd

    Strsd New Member

    I appreciated your reply to my email. I'm sorry to hear that you are feeling guilty about your situation also but it does seem like you are doing something positive for your daughter and yourself. It takes a lot of courage to make the decision you have made and the fact that you're trying to make it as easy on your husband by keeping him home as much as you can, is very admirable. It is a terrible disease and nobody should have to suffer through it, whether it's their disease or the disease of a loved one. My situation has improved quite a bit. The Lexapro that they put my Mom on has changed her alot. I think that Amytriptyline was causing many of her problems. Her thinking is much clearer now, no more hallucinations or excessive sleeping. A friends mother is also having problems with Amytriptyline so it makes me wonder if it was the cause of most of my problems with her. I hope you can give yourself the credit you deserve. It sounds like you are a very caring person, with 3 people to consider, and you have made wise decisions for all concerned. Take care and God Bless you.