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Sandra2424 Posted June 2017

Help. I'm addicted to the AgingCare Caregiver Forum!

I've been a physical therapist for over 35 years and have worked in many different areas of caregiving. I was totally unprepared for being a caregiver. My mother was always domineering and liked to be in charge. For 20 yrs, my sister and her husband did everything to keep her in her home. ex:snow, grass,maintenance,dr,er,etc with no thanks at all. She fell often, but never any fractures. Got her a life alert which she cancelled, wouldn't allow home care nurse in house, The final straw was when she would call 911 for help to get off the floor and then complained that she shouldn't have to pay for this since she refused to go to the hospital. One night when I was visiting and my sister was staying overnite, we heard several people talking downstairs (sounded like a party). We went down in pajamas to fing several neighbors there to help get her off the floor!!! None of them were very young and we were SHOCKED! I later found these people programmed into her cell phone and had been called at other times to lift 180lb dead weight off the floor, so she wouldn't have to pay ems. We're talking about a 93 yo. Finally, she fell flat on her back in the Aldi's parking lot and injured her back.
She called me all excited because she was going to have back surgery! She loved all the attention of drs, hospitals, etc. I told her she wasn't having back surgery and I was flying there asap. (I spent the past week with my dau who was septic in an ICU in Maine due to a botched gall bladder surgery).
So, we moved her from upstate, NY to Michigan which was an 8 hr drive in the car. We had leased a small, accessable apartment within walking distance of our house. Fell 3 times in 1 day, so had her go to er. Went to rehab after and improved to walking with rollator.
WE went crazy and found a studio appt in asst living. Finally, some rest.
Not so fast. She went out on the activities bus and did pretty well. She's eastern European and spent her life hoarding food, going to grocery stores all day, and cooking. She continued to have falls and I was worried everyday about how many falls they would put up with. She was making complicated recipes in her microwave and making a big mess. She by then had CHF and severe arthritis. After a mild stroke which disabled her right hand, she got very angry with me for taking away the rollator and making her use her wheelchair. She still continued to cook so we emptied out the kitchen. (She was paying for 3 meals/day and only went to dinner). We told her she would have to get meals in the dining room, upped her care level, and insisted she ring for help in bathroom, dressing, etc. She also refused showers for the first 2 years and claimed she did a bath with wipes. She was sent to her room from meals several times due to odors.
"When we moved her here, I was expecting maybe 6 mos. It's been 4 years! 6 mos ago she started palleative care at AL with increased care level there. Cont to use br herself, but at least started agreeing to showers. Of course, I was worrying about getting a fracture and refusing treatment.
She was 97 2 weeks ago and family came for a big celebration. She was happy and in good spirits. Later that week, I had my 25th birthday. The next day she passed away sitting in ther chair. WOW
She was such a pain in the b. At least everyone there loved her even she wouldn't follow and suggestions and safety issues. She was very pleasant with everyone, except me. She had no dementia and knew exactly what she was doing when she was asking the aids to leave her alone.
If I wouldn't have found this site, I would have lost my mind more than I already have. I've never posted, but I felt that there were others out there dealing with refusing care, cancelling call buttons, etc. I don't know about risking neighbors health by asking them to lift her. I would always cringe when anyone would say "let us know if you need any help" because she was always happy to get as much as she could out of them.
I've resented her for always being domineering and have had much counseling from growing up with her criticism plus her continuous interference in our lives. About 6 mos ago I was getting suicidel really didn't feel I could take anymore. Now I feel relieved and I consider you guys to be someone who can understand. People say they're sorry about her death and all I can say is that she was 97 and in pretty good health and didn't suffer. Also, she died the morning after my 65th birthday, so it wasn't ON my birthday. That's the best I can do.
Back to the title of this post. I can't get away from this site. I will tell everyone about it (including patients' families.) I'll still be following and supporting you. Thanks.

anonymous272157 Jun 2017
Condolences for all you've been through, and for not having a loving, positive Mom. I'm reminded of my MIL, whom I never had to care for. I am truly fortunate to have an aunt who is usually sweet and caring. It made her UTI behavior obvious immediately. Thanks for sharing. Do something nice for yourself.

daughterlu Jun 2017
So sorry to hear the bad side of caring for a LO from so many. This is my third year of caring for Mom. She is as sweet and pleasant as she can be. Stress from extended family and a rogue facility injured us both. Recently there was a dialogue on AgingCare about how family infighting killed a LO by putting or keeping the LO in a facility where there was negligence by authority when the LO was placed out of town or shut out of the siblings life who was kind, caring and/or willing to give the caregiving the LO needed. How sad. Thank God my son and I got Mother out of that situation alive. Between the two of us and his wife we are with her 24 x 7 in AL. with me getting breaks to go to church and participate in bible study and choir. I still have anxiety over what might happen in the future should my cousin jump in and mess things up again. My brother changed after seeing what harm a rift in the family can bring. He is out of town but very supportive. Mother is getting stronger. She has damage to her eyes from the rogue facility that can not be healed and she relies on a wheelchair now instead of walking on her own or with a walker. Thank you all for caring for your loved ones even though you have given up years to serve them. Like so many have shared, I do not have the finances to stay in a facility. As far as one of my two sons stepping up to provide care for me, I do not see that happening. That is a separate issue. Caring for my Mother is a blessing in life while every day I think of an outstanding experience - i.e., being on a mountain top above the clouds in the sun and skiing down the mountain in to the snow/sleet, etc. Keep your best experiences of the past with you every day with a picture or reminder here or there. Being with my Mother now is the best of the best. Mother, son, daughter-in-law, cat and myself are experiencing the close loving family that escaped us in the past. Freedom, self indulgence doesn't measure up. Cleaning up messes isn't so bad. Give it a funny name like the mess is a friend. Blessings. PS. Every day I look at AgingCare. It is very helpful and a site for the good.

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daughterlu Jun 2017
So sorry to hear the bad side of caring for a LO from so many. This is my third year of caring for Mom. She is as sweet and pleasant as she can be. Stress from extended family and a rogue facility injured us both. Recently there was a dialogue on AgingCare about how family infighting killed a LO by putting or keeping the LO in a facility where there was negligence by authority when the LO was placed out of town or shut out of the siblings life who was kind, caring and/or willing to give the caregiving the LO needed. How sad. Thank God my son and I got Mother out of that situation alive. Between the two of us and his wife we are with her 24 x 7 in AL. with me getting breaks to go to church and participate in bible study and choir. I still have anxiety over what might happen in the future should my cousin jump in and mess things up again. My brother changed after seeing what harm a rift in the family can bring. He is out of town but very supportive. Mother is getting stronger. She has damage to her eyes from the rogue facility that can not be healed and she relies on a wheelchair now instead of walking on her own or with a walker. Thank you all for caring for your loved ones even though you have given up years to serve them. Like so many have shared, I do not have the finances to stay in a facility. As far as one of my two sons stepping up to provide care for me, I do not see that happening. That is a separate issue. Caring for my Mother is a blessing in life while every day I think of an outstanding experience - i.e., being on a mountain top above the clouds in the sun and skiing down the mountain in to the snow/sleet, etc. Keep your best experiences of the past with you every day with a picture or reminder here or there. Being with my Mother now is the best of the best. Mother, son, daughter-in-law, cat and myself are experiencing the close loving family that escaped us in the past. Freedom, self indulgence doesn't measure up. Cleaning up messes isn't so bad. Give it a funny name like the mess is a friend. Blessings.

gladimhere Jun 2017
I definitely do not think I am addicted to this site. Addictions are not healthy. This site is very therapeutic and helpful. So many in so many different circumstance, yet very similar, we are not alone after all.

My mom passed just a few days ago, June 1, at 90. She was diagnosed with Alzheimer's 10-12 years ago. So, Sandra you are not alone. My condolences on your mother's passing. For me it is more the end to my mom's suffering and she is now released from her disease. It is a blessing.

And  I plan on being around for quite some time.

freqflyer Jun 2017
Sandra, I am addicted to this website, too. It seems like every time I walk passed my computer, the website is calling out my name :P

Thanks for coming out from behind the scenes. I am sure each one of us can related to one or two of the items you had to deal with with your Mother. My heartfelt sympathy to you and your family. I also had a very stubborn Mom who was in denial of her age and that of my Dad [both in their mid-to-late 90's].

It was quite an interesting journey with my folks, thank goodness for talk therapy, pills to calm me down, and for this website. I was ready to run away from home !!

William89 Jun 2017
Sounds to me like you cared a great deal, and have figured out how to take the experiences you have learned from what you described to map out your own future. Enjoy living.

golden23 Jun 2017
((((((((hugs)))))) Sandra. My condolences on the loss of your mother. You are not the only one who comes back here after their parent has passed and who is most welcome to continue to share. I have one daughter too, and listen to her suggestions, and plan never to be the burden to her that my mother (aged 105) is to me (aged 79). Now you can concentrate on you!

Sandra2424 Jun 2017
One more thing. I have one daughter. I told her I will never leave her with a lot of stuff to get rid of, have our finances in disarray, will be open to her suggestions, and try to cooperate with changes that may need to be made. She has her own life!

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