A couple of months ago, I told a friend of mine that I felt like I had fallen into a soap opera and couldn’t escape. The last 2-3 years have been exhausting, sad, and mind-numbing. When I discovered this site, it felt like coming home. As I read other stories, I found myself nodding (and crying a little) but recognizing the most important truth…I’m not alone in my role as caregiver.
I’m the youngest of 3 and the only daughter. My widowed mother always told me she had set up everything for me to handle when the time came. Neither of us imagined Alzheimer’s would be the culprit. My brother, Ken, was living with my Mom as he battled throat cancer. She was already in the early stages, but they could take care of each other. Ken beat the cancer (what a sigh of relief) but he continued to live with her for several years until he couldn’t take care of her (she would get out at night and wander down the street). I live about 90 minutes away, so we moved her here and I found a nice assisted living facility that specialized in dementia/Alzheimer’s residents. It wasn’t cheap, so I would go there 2-3 times per day and help with her personal needs. Unfortunately, my Mom didn’t suffer from just confusion, but the frustration caused lots of anger, verbal abuse, combativeness, paranoia and anxiety attacks. I knew it was the disease, but it killed me every time she told me what a cold-hearted bitch of a daughter I was for putting her in prison. She did calm down a little but I had to go to “the home” more than once in the middle of the night to calm her down so they could give her Ativan.
Ken had his throat cancer return along with tongue and lung cancer. He didn’t want to go the chemo route, but finally relented. Although my oldest brother helped as much as possible, Ken was basically alone. I knew, if my Mom was in her right mind, she would insist I drop everything and go take care of him (she would’ve). But she wasn’t in her right mind and I couldn’t leave her. The chemo was brutal but he made it thru and it was successful. Slowly, he started feeling better. Spring 2009, he was getting out of his apartment and rejoining the human race. Early June he returned to his cancer doctor for a checkup and told him everything was much better except he was having problems urinating. I guess red flags popped up and he was referred to another specialist. I don’t know exactly what that doctor told him, but I gather it was “this could be an infection or it could be prostate cancer”. They ran tests.
When Ken started chemo, I had gone there to get set up with his medical power of attorney as well as general POA. He told me how terrified he was of dying slowly eaten away with cancer. He made me promise I would do everything in my power to insure he didn’t suffer. I believe he thought the test results would show prostate cancer and he could not face chemo again. Before the results came back, he went home and shot himself.
I had to go handle things (including cleaning his apartment). He didn’t have much, but we did the best we could to give him a proper send off. I’m still angry at him for killing himself, but it also breaks my heart that he felt so alone and terrified. My Mom doesn’t know, of course, and I keep him alive by getting cards and gifts and signing his name. I feel guilty…if I had gone and plucked him out of that apartment and brought him home, perhaps we could’ve fought the battle.
About six weeks later, my Mom ended up in the hospital with pneumonia from aspirating. A peg tube was inserted and we had to put her in a nursing home. When she felt better, she cried and begged for food because she thought she was starving because she wasn’t getting anything by mouth. After a couple of months, I couldn’t stand it. We had the tube removed. At some point, she’ll probably aspirate again and the pneumonia will probably kill her, but eating is one of the last joys she has in her life. So, the nursing home feeds her soft food and she loves it.
Two of her sisters have recently passed. The remaining two sisters have either Alzheimer’s or dementia. For me, it’s like writing on the wall. I know most people fear their doctor telling them “you have cancer”. I fear my doctor telling me “Susan, you’re in the early stages of Alzheimer’s”.
I still go see my Mom every day. We just visit as the nursing home takes care of her personal care. Eighty per cent of the time, she doesn’t recognize me as her daughter. I tell her not to worry, I’ll remember for the both of us. It doesn’t happen often, but every now and then, she’ll reach over, touch my cheek and say “I love you Susie”. It makes me cry every time.
Since my family seems to be dropping like flies, I find myself worrying every time anyone gets a cold or the flu or anything. My wonderful (supportive) husband is under a lot of stress with his job. He has frequent headaches. I look at him and wonder “is it a brain tumor?”.
But then, like I said, I discovered this site. I realize…life is messy. We do the best we can and keep moving. Thanks to all of you for helping me realize I’m not alone.
First, I want to say thanks to everyone who has responded. I really took to heart the comments about my brother. I finally let go of the anger and guilt. I still mourn him but I try to think of him NOT suffering now. I’ve visited this site often and have wanted to comment here and there, but taking care of my mother has been a rollercoaster ride. We went thru another bout of pneumonia. The doctor got irritated with me because I refused a peg tube. He said I should take her back to the nursing home and sign her up on hospice because they couldn’t stop her pneumonia without a tube. So, I did. Within a couple of weeks, her lungs were 99% clear. We still had lots of problems (falling out of bed a couple of times) and mini-strokes last weekend. Tuesday morning, she passed away at 8:30AM. I walked in the door of the nursing home for my normal visit at 8:35. Luckily, the hospice aide was right there with her. She died quickly and didn’t seem to have any pain. To be brutally honest, I always thought my first reaction to her death would be a huge sense of relief…for her that her suffering was over and for me as well. I was wrong. My first reaction was shock (even though I suspected she was getting close, maybe even days away) and it felt like a huge chunk was ripped from my body. At the moment, I’m numb. I’m focused on the “final business”, arranging the service and burial, notifying everyone, clearing out her room at the nursing home…all of that. It’s difficult to imagine next week, when I fully realize she won’t be the center of my focus. My life has revolved around her care for several years now. I’m not going to worry about it. I’m heartbroken because my mom has died, BUT she was in such a bad way; 90 years old, advanced Alzheimer’s and living in a nursing home was hard work. I don’t wish her back. I personally believe there is one hell of a family reunion rocking on “the other side”. I suspect she was shocked to see Ken there, but I’m hoping he was the one who helped her cross over. I don’t she would be afraid if he was there meeting her. After I’ve had a chance to catch my breath, I’d like to contribute a little more. There were a couple of things I’ve learned about the process (the elderly and health care) which may or may not be common knowledge. Again, thanks to all of you. It always made a difference when I stopped by and read some stories or comments.
Susan
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Dear Susan, it sounds like you made all the right decisions for your mother – good job, kid. That numbness is a blessing when you have so much to do. It’s futile to wonder what next week is going to be like – there’s really no telling when the grief will start. Just take it one day at a time, one hour at a time when you need to. But here’s the thing about the grief – your psyche is like a woman posted at a flood gate – she won’t release more than you can handle. She’s keeping the gate closed right now because you have things to do, but every once in a while she’s going to release a little more and then a little more. Unfortunately, she won’t announce when she’s going to do it, but just go with it and be gentle with yourself. You’re going to feel a bunch of complex emotions because at the end you were your mother’s daughter AND her mother. (This sounds like something from “Chinatown”!) Just know we’re here for you, and will be glad when you can come back and share what you learned out there in the trenches. Rest now. ~ Jean
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Dear Susan, I am very sorry to hear of your mom’s passing. I am sure she is as she was before, fully whole again, and at peace. You did an amazing job as caregiver, it is something you should be very proud of, and I am sure she and your brother, Ken are smiling down on you today. It will be day by day for you, I remember feeling great relief when my Dad passed, and then without warning a few weeks later, someone said something about his passing, a kind word, and I had a breakdown, couldn’t stop the tears. You will come out stronger, but you will never forget the pain of losing her, it just gets easier to handle as time rushes by. I look forward to “hearing” from you and reading your thoughts. Please take care and know we are all thinging of you and your family.
Fondly,
~Char
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Dear Susan –
Imagine loving arms wrapped warmly around you, holding you safe, and rest.
Joan
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My mother always had a saying for everything and one of her faves was “you’re damned if you do, you’re damned if you don’t”! I agree with Jean that even if you had had a way to “pluck” Ken out of his apartment and bring him to you, you most likely would not have been able to pluck him out of his despair. His suicide was not your fault. It wasn’t his fault either. It was a desperate act of a very sick man. He was sick emotionally as well as physically. You have your anger but please, don’t hold onto it for too long. I used to think that people who took their own lives were the most selfish people but now I realize that they are just very damaged people that don’t believe they have any other alternative.
As far as your mother’s disease, I know how difficult dementia can be. I am caregiver to my best friend who is 44 years old and has an 8 year old son. It has become much easier to take care of the 8 year old than to take care of his mom. I must encourage you to find a support group. There are many resources and sometimes you find a place that feels like home. Everyone seems to just know. With my friend, her disease is much more rare than AD so finding a group was very difficult. It helps a lot when others know what you are dealing with. Including the anxiety.
I am also a worrier and when my husband or my sister says they don’t remember a discussion we had or the name of that actor who…I get this choking feeling in my throat. I have to stop and remind myself to breathe! Sometimes you have to just talk yourself down. Hang in there and keep up the outlook you have. It’s important to find some positive somewhere in all the heartache! Good luck to you.
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Dear Susan:
Your story really moved me (as many of the stories here have.) I, too, am glad you found this site. I will put you and your family in my prayers.
Regarding Ken, I honestly can’t say I wouldn’t make the same choice he did, given the same circumstances. Suicide is such taboo, and very sad, and often grows out of a temporary hard time, which is saddest of all, especially if just a little time passing could put the person in a totally different ‘place’ inside.
Yet in SOME cases, especially some cases of illness, I feel it CAN be a courageous and appropriate decision to make. I know many will disagree, and that is ok (we can’t all agree on everything!)
Although no one really knows what happens beyond here, I believe Ken is at peace and believe your willingness to be there for y’all’s Mom would mean more to him than you having turned your back on her to care for him.
Hard choices! Yes! Yet your love and devotion to both your mom and brother come through in your words. You have nothing to feel guilty about. I’m glad you have a “wonderful, supportive husband” at your side. Now look girl, don’t take on HIS stress as well!!!
Give all your worry to ‘God’, and remember to take care of YOURSELF too!
Dorothy
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Dear Susan, wow. What a story. I literally gasped when I read that Ken killed himself. And then I immediately thought of the guilt that you would carry around with you, on top of everything else you have to carry around. I think it’s interesting timing that Suzie F’s story went up after yours – she says that everything around the time of the diagnosis is a blank. I know what that’s like, there are so many blanks in the days after Dan’s diagnosis when I don’t remember making certain decisions. I want you to consider the very real possibility that when Ken made the decision to end his life, it was a decision based solely on fear and emotional exhaustion. And that, even if he had contemplated suicide before, he wasn’t himself when he acted on the impulse. If you had “plucked him out of that apartment”, there a good chance the fear and exhaustion still might have won out. I’ll bet that once he made the decision he felt relief at leaving the fear and pain behind, and that he just couldn’t face living a life in which he would worry every day about more cancer and chemo. I’ll bet he took comfort in knowing that you were going to handle everything for him once he was gone. ~ Jean
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First, let me say how nice it’s been to talk about this without worry. You guys understand. I so appreciate it. And Jean, I believe you’re correct. I think Ken’s decision was based on fear and exhaustion. Looking back, I *think* he probably made the decision once the chemo was over and he was feeling better. Knowing him, I think he decided then, if any cancer came back, he couldn’t go thru the treatment again. I’m struggling to get past the “if only I had” stage. We can’t control everything. And like you said, the fear and exhaustion might have won in the end. I am grateful that my Mom has no idea. He still lives for her.
Thanks again to all for your encouragement. Susan
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From one Susan to another, I cannot imagine going thru what you have, are and will be going thru. They tell me what doesn’t kill you makes you stronger. I sometimes wonder. I am glad you found this site and I hope you get as much comfort and strength from it as I have. I pray your journey goes smoother and my mantra, you are never, ever alone. Blessings, hugs and prayers!! susan
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Thanks Char. I appreciate your kind words. My husband says “worry” is in my DNA. Could be, along with its side-kick guilt. Hopefully, one day I’ll lose them while walking and they won’t find their way back to my house. Maybe if I jog.
Susan
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Susan so thats the reason, people jog!!!!
Be well.
~Char
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Dan used to tell me that I worry too much. I told him it’s difficult for one to give up something that one is naturally gifted at. ~ Jean
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Susan, my heart goes out to you. Glad you found us. Never worry,there is always someone around here to “talk” to.
I am a born worrier, I try hard as I can not to, but…. as you said life is messy,got to get on with the living and caring.
All of my best wishes for you and your family. You are not alone.I think you are very brave.
Char
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