What perceptions did you have in the beginning and how do you feel about it now?

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What is caregiving?

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Braida- such a beautiful story. Thanks for sharing. My mom is also a very cheary person and always tries to please. She doesn't like being left alone and that does make life hard but I just pray I can have the endurance and strength that you had. I don't want to put my mom in a home if I can help it:)
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I became a caregiver for my dear Mom 8 years ago. At first I brought her to the city where I lived with my husband, and set her up in a nice independent living apartment close to me. But her memory was so bad, that she couldn't find her way to and from the dining facility without feeling she'd get lost, and I was running over to help her and keep her company many times a day. She was lonely there, couldn't make friends because she forgot who the people were, thus felt surrounded by strangers. That's when we moved her in with us. She had her own quarters within our home. She ate all of her meals with us, and was in our part of the house on and off all day. Things were pretty manageable for a couple of years. We could leave her on her own for a couple of hours, leaving notes to remind her of things, and she could call us at that point too. But it then got to the point where she felt fearful if we were gone, and sometimes forgot where we'd gone, and when we'd return, etc. So it got to the point where we couldn't leave her alone for even a small period of time. We felt trapped too, like others have mentioned, because we couldn't do anything spontaneous, and had to arrange for sitters if we wanted to go out alone or to a function. Otherwise, Mom went everywhere we went. Very fortunately, she was a very sweet and fun person to be around. She had a great sense of humor, and a desire to please us, and not be problem to us. She was always thankful and grateful for all we did for her, and mentioned it often. She had coronary issues, and the last month of her life, she began having more problems, and seemed to go downhill somewhat rapidly. Her walking became more unsteady, and she had spells of angina requiring nitro pills. She had a couple of instances where we had to have her ambulanced to the ER, just the last week of her life. She died at home just a month ago, and I was not ready for it. It's hard to put into words how much I miss her sweet, childlike presence. She was the type of Mother who gave unconditionally to her children (there were four of us) but I was the only caregiver. The others lived out of state, and saw her about once a year. Because of the close relationship I always had with her, I couldn't think of plunking her in a care facility, but wanted to care for her in our home so she could be surrounded by her family and people who knew and loved her, rather than strangers. (even though I know many caregiver strangers are kind and loving.) The last year or so was difficult in many many ways, with lack of sleep, sometimes loss of patience, and certainly loss of our lives and freedom, but there was also much joy and a great companionship....almost comparable to the type of love that a beloved pet gives to someone....absolutely unconditional and she was always just happy to be around us!! She loved to do the most simple things, just trips to the bank, the store, the doctor, and such. She was my sweet lovable best buddy. And I miss her every day. The loss is deep. I never regret for a minute the time and love I gave to her, because she deserved every minute of her. I actually regret things that I felt I could've done better, which I suppose is just human nature after such a loss. I would always recommend caregiving of a beloved parent in one's home, or their home, if at all possible, because although I can't minimize the sacrifice and hardship, I believe from the bottom of my heart that it is worth it.
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I had a long vent typed. It was cathartic. I deleted it, didn't want to offend anybody with my long winded complaining and cussing. I've found some things help in caregiving a little, some more. My dad is a self centered user sociopath, so it is very important to keep everything at a strict routine with him. This way I'm prepared for the insults and constant demands and name calling, making it easier to brush them off and not take so seriously, same with the spit and trash he throws on the floor for attention. Setting a strict routine also gives me time to call friends and stay in touch and do other things I enjoy, reading, crafts, exercise, nap, drink, run screaming through the house pulling my hair out.... just kidding, kind of.

Joking aside. I feel everyone's pain, it's a painful and thankless job being a caregiver. I just try to hang onto some normalcy in my life and some routine. I've lived long enough to know that nothing, good or bad lasts forever, it just doesn't, I know this will not last forever, and when this passes my life will be different again. Everyone should make some kind of plan for life after caregiving, keep it simple, like moving and where that would be and why. Fresh starts are a good thing, and living lean. Hang onto to the good friends through this, even with a phone call now and then, don't give up things you absolutely love.

Hugs.
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My dad passed away in January of this year. My mom and dad had been married for 66 years. My mom took care of her mother 6 months of the year for almost 20 years when she was younger. She always told me she never wanted to be a burden to either my brother or myself. Sadly, my mom is not physically able to live alone and I took her into my home while my dad was sick in the hospital and she has been here since. It has definitely been an eye opener for me. She has some dementia, poor vision and nueropathy in her legs so requires the use of a walker. If not for the help of my two girls I don't think I could do this. My mom doesn't want to be left alone so if I want or need to go somewhere I have to take her with me or have one of my girls come over and sit with her. Thankfully, my husband has been very understanding. My mom is 90 and isn't bitter or mean. Always says please and thank you. I hope she always stays like this. I have read so many posts where that isn't the case. Somedays are hard and I get down and depressed. I wonder if I will ever have my life back again. Then other days I tell myself to cherish the time I have left with her. My brother only helps when it us convenient for him. I try not to get resentful but I am at times. Caregiving is the hardest thing I have ever done but I just can't put my mom in an Assisted Living place. She would just be lost. There might come a time where I have to do that and I am dreading the day. So for all of us caregivers I pray for strength, patience and peace of mind to get through this difficult time in our lives. God bless you all
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A post from the "new" poster: hadenough and PrettyGood, I've been reading your posts and my heart is aching for you both. We will never understand why in our Universe does the body make it and the mind does not.
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Spouse response ~ seems like many years ago, when the symptoms started my husband was in his mid 70's, me 58ish, I really saw no big changes in him it was very slow going at first, in my mind ( after two years of denial with me) I thought I read enough, took enough courses, listened enough, that I knew how each step would go, that worked fine for awhile, I could still go shopping we could still take vacations, then it seemed like all h*ll broke loose, the disease within my husbands body was getting too much to bear for me, and with no more being able to leave him alone, for the past two years, it seems sometimes like I can't even breath. It really got to me twice & ended with me having to be hospitalized. But once I was able to get myself together, things started becoming a bit easier to handle. My husband is now almost 84, very healthy except for the mental deteriation, I think the biggest setback during all of this his his one daughter, an RN 25 minutes from us, I thought I can do this with her knowledge & support, she would be the help we so desperately needed, but it was never to be! Now how do I feel? Positive, we are going to make it, love & caring & living in his world for now is the key ( along with a few choice meds.) If not we go to plan Z
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I have been my Mother's caregiver for 3 years now in her home. My sibs visit maybe once a month even though they both live less than an hour away. I have always been close to my Mom and we enjoyed each others company so I thought it would work out OK. It has actually worked out wonderful for dear Mums. She no longer pays for anything (all of my savings is almost gone) and uses me as her personal assistant/slave/mom and little friend. I hate it. Her personality is pretty much gone and she just stares at me and follows me around. I feel totally abandoned by the other family members. What I do to keep my mental health is insist on respite. Because my sibs are so filled with guilt they can hardly say no to my getting 3 days off every other month. Not much is it? If I had to do this over I would have found a nice assisted living facility. That is not an option now as my Mom is totally happy in her home and has serious memory problems. Glad she and my sibs are at least happy - but it was at my expense.
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Thought I would spend end of life years with the mom I love so much. I have, but not in the way I thought I would. Still love her so much, but when the mind goes, you lose what you cherish. But it is all worth it, she is still my mom and I love her.
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I imagined both my parents would be dead before 90. Now, over 5 years later, they are STILL ALIVE. Modern medicine.
I imagined that everything would truly be Fair & Square, between the kids. Now, I see how the out-of-state kids are treated like Royalty, and I, the only local one, who does 24/7 caregiving, is treated like ordinary, even slavery.
I imagined that my parents money would be theirs alone. Now, I see my Sis writing checks on parents account several times a year, for her travel expenses to visit parents, and other things.....at the same time, I am most definitely NOT paid for my gas to drive back & forth to parents, to their doctors, to their shopping, to go pick up ice cream & deliver it to them, etc.
I imagined I would be so proud to be their caregiver, that they would really appreciate it. Now, I think I would rather be one of the out-of-state kids, who gets to live their own Life, on their own schedule, and when I feel like I have extra time for family visit--get Paid to get on a plane, sleep in nice hotel, and receive a little extra cash on the side, just because I'm one of the Royalty that out of state kids are!
I imagined that my out of state siblings would support me in being the On-Call 24/7 caregiver.....maybe send me a birthday card, or a gift certificate at Xmas....but instead, they never even call me, instead they mistrust me and grill my parents over what I am, or am not doing.
I imagined my parents would be able to understand and SEE what is really happening. Instead, Dad has worsening dementia, and Mom just does the helpless Female thing and claims she can't change anything that was set up 25 years ago.
I imagined that I Would Own MY Own Life. Instead, I have discovered that in order to Re-Gain My Own Life, I will have to deliver a crushing blow to my parents who depend on me, and further alienate my siblings.
I imagined that my parents might give me a little something extra, whether it is regard, or their coin collection, but Instead, Sis is claiming the coin collection, grandma's gold/diamond jewelry Brother, and then Sis wants me to accept an old used motor home as my share. They all "claim" that it is easier for me to take the big heavy items, since they live out of state they will take the small items.
I imagined everything would be Fair & Square. But in reality since I do not have the POA, the Executor, or the Trust, I have absolutely no say in what goes on, but I am still expected to set aside my Own Life to support my aging parents.
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I wish I would have been firm with my mother when she started demanding to move in with me. I should have just said no. Now I am half-way into buying a condo for her to live in. She blithely informed me last week that she will not be paying me any rent. I told her she would have the proceeds from the sale of her townhouse for the rent. She told me she can't spend that money, that is her children's inheritance (my dead beat brother & sister).

I am one phone call away from cancelling the condo purchase.
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