The difficulty of being a caregiver, especially during the holidays.

Thank you for your beautiful words. I've been doing this for only 4 months, but some days it seems like an eternity. I feel for all of us caregivers, and you are all in my prayers.

God Bless you for your comments!

Omg
thank you for posting this

Hang in there and MOST OF ALL have faith and enjoy these times!

Thank you, memsobelle- you're a sweet, caring, compassionate person. I've never cried so much in a Christmas week! :) Nice to hear from someone who understands. Merry Christmas!

This is my first Christmas as a caregiver to my 90 year old mom who now lives with us and my husband who was diagnosed with Alzheimer's right after mom had her stroke. I got a double whammy. I cried enough to make a new ocean. We have all been together for 4 months now. Some days it seems like an eternity. On those days I sing that song "I'm still standing. Yah, yah, yah." One daughter-in-law checks on me almost daily and always (first thing) asks how I am. The oldest granddaughter is my mother's care giver one day a week so my husband and I can go to dr. appts. and just be together for a little while. I love this web page. It's good to know that I'm not alone and that my inner feelings are natural. Merry Christmas to all of you out there, and may the New Year bring each of you at least one good thing a day to help you feel good about yourself and the good you are doing for your loved one.

The gates of heaven opened this morning for my 93 year old Mom. She and my Dad were married for 73 years. They lived in the same nursing home for the past month. Not many people can say they had both quality and quantity of life but she certainly could.

I am the original poster. Again today as I sit with my 97 year old father, I think of us all and I pray for peace, health and patience for all of us. Undoubtedly caring for a parent/spouse/loved one is the hardest of tasks, often rewarding, sometimes emotionally and physically taxing. Hang in there, folks. As people often tell me, “This won’t last forever!”. Sometimes these twenty years do seem forever, though.

Don’t forget to take care of yourselves! ❤️

Merry Christmas to you all. 🌲🎊🌲🎊

Thank you so much for your comments.
A big hug to you❤️

Thank you for your support! You know all of us don’t have family members that call or come by to visit just because they don’t want to face the reality that their parents don’t remember them sometimes. The adult children are in denial or are to busy with their own lives. I make excuses for them everyday so my mother doesn’t feel like they have been abandoned.

Thank you. Of all the greetings I’ve received this morning, this one hits home because you “feel my pain”. Mom made my Thanksgiving so horrible until I dreaded Christmas.
This is my second year being the caregiver for my 88 year old mom and I’ve never felt so alone. Maybe if she was nice to me or showed me any sign of compassion, it would be easier... Happy Holiday, fellow caregivers!

As Alzheimer's disease progresses, you lose your loved one. Even when mom was alive I lost her over 5 years ago due to severe Alzheimer's. My way of dealing with holidays was to reprogram my thinking that it is just another day. Since I dealt with mom's Alzheimer's for 15 years (the last five were end-stage) and she died practically brain dead at age 90, unresponsive to the environment, unable to speak, or even move her arms (I had to do range of motion exercises to keep her from getting contractured!) -- and kept alive with a PEG tube--but very comfortably and she never suffered (ironically it was not Alzheimer's that killed her--she had liver failure due to liver tumors), I stopped doing Christmas and just treated it like another day. I took good care of her, and her skin was perfect up until death, and not a single complication from her PEG feeding tube as I dressed it daily and kept it flushed so it never clotted. I also instituted a bowel schedule three times a week to prevent impaction. Yes she was very comfortable Oh and I put her in the living room every single day for about 8 hours -- it was good for her breathing. Up until death no urinary tract infections, NO lung issues, NO infections, and clear lungs. That feeding tube kept her fed, well hydrated, and very comfortable and not once have I ever used a single narcotic or psychotropic over the 15 years of Alzheimer's disease. I used hospice like a clinic and I told them to routine tests on her. She was on hospice for TWO YEARS. When mom was dying of liver disease, the hospice nurse never had to open up the "comfort kit" because she was so incredibly peaceful (the only time she moaned was when I changed her diapers, but I had to turn and clean her poo -- can't lay in it you know!). Otherwise she was very peaceful. So I knew she could respond to discomfort because she did not like getting cleaned up..but I got so used to it I could clean and change her diapers a few minutes by myself. I was her sole caregiver. I recall going through about 5 diapers a day.

So instead of all the hoopla of Christmas it remains just another day for me. However, that does not stop me from enjoying all the Christmas lights people put out. It's also fun to play with all the Christmas gadgets while going to stores LOL

I also get time-and-a-half for working today! Yay! You all spend money..I'm making money.

Mom died just 2 months ago, but I'm at peace because I took the best care possible for mom and nobody on this planet would have done better than I did, so I cannot reproach myself. People do die -- we all do. They are supposed to die, so Christmas does not bother me. Considering mom was insulin-dependent diabetic, which I managed her sugars extremely well, END-stage Alzheimer's disease (to the point she no longer responded to the environment), high cholesterol, metabolic syndrome, and liver disease, she lasted to 90 years old, her skin in perfect condition, and comfortable and peaceful throughout even while dying. Even her death was peaceful. It was the most peaceful death -- so she lived a very good quality life even with end-stage Alzheimer's since she was very comfortable and knew she was loved. Always loved. That's probably why I never needed narcotics or psychotropics.

Taking care of mom was very hard and it was stressful. I was by myself and always worried something might happen to me like catching the flu, get laid up in the hospital, or something, and mom would die because nobody will take care of her like I did. But if you still have your loved one, please appreciate every single moment you have with them no matter how hard they are to care for because one day she will die and trust me death is forever...you will never see them again and all the wishing in the world will never bring them back.

I lost 15 pounds after mom died. That's how much mourning I went through. I know she's in a better place and her mind was gone in the end...but I still cry

Take time for your self I sing to my Mother she tells me she loves me I know she feels alone but I live with her and I am in the next room when you feel overwhelmed take a breather maybe a cry once in a while I do what I can for my Mother to make her well.I bought a bullet and I puree her food now it takes time but it is worth it.
Also make sure you eat.

If you used to enjoy the holidays or cooking for others or just want some companionship during the day that you can no longer get from your "family", stop inviting _them_ because _they_ are the problem. Invite some people from your extended family, church, or neighborhood who are also alone. They will not ignore you. They will appreciate being invited. They will be pleasant guests. Everyone can enjoy a few hours of good food and good company.

Don't give control of your life over to the bad choices or insensitivity or ignorance of people fate threw your way. Take as much control back as you can and create a few hours of happiness for yourself.

BTW: You don't have to cook much to enjoy the holiday anymore. One year I purchased the basic turkey dinner from a local grocery, made some iced tea, coffee and a couple of our traditional sides, and invited my guests to bring their favorite dish. It was still a wonderful meal with good company. Restaurants can work well too if your LO needing care can cope.

CM,

I totally get what you’re saying. We should be loving and charitable year round. I do get people doing extra special things during the holidays though and I think it’s very thoughtful. We should be grateful for generosity no matter what time of year. We should give to others when it’s possible for us to do do.

Some people get depressed during the holidays, some get stressed or feel pressure, some are lonely and so on. It’s a mixed bag, for sure.

I'm seeing this from a completely different angle this year, because I'm now working for a social care organisation instead of being a potential client :)

Clients and their family members over the last few days have been surprised that we work through the holidays. "Even Christmas Day?" they say. Well, yes, of course - people who need our support don't suddenly stop needing it on the 25th December.

And you've reminded me that some of them will need us all the more on that day.

NEVER GIVE UP

I have been with my Mother 3 months now I bath her feed her dress her I have to get her in and out of bed I
I would not trade it for nothing it is days before Christmas and we will and can not shop together my Mother cannot walk,
She eats soft foods I feel that she will get better.
I do not want her to see my sadness for her,
She has always been strong it is hard on her,
I got in the shower this morning and cryed,
As a caregiver you have to take time for yourself and never give up.

Kbuser,

You’re welcome. I feel like they should show appreciation. My siblings didn’t show any gratitude either.

Thanks NeedHelpWithMom, it's nice to know I'm not the only one who experiences that type of treatment. I am going to have to stop hosting holiday gatherings too.

Kbuser,

I get that. I couldn’t stand being treated like I was invisible while they ate three portions of food! That’s why I ended it and didn’t regret stopping hosting holiday dinners in the least. In fact, it was a huge relief.

Thanks for the post. I had my siblings over for thanksgiving and actually felt more isolated with them present. My sister and 2 brothers all chatted amongst themselves, never even looked at mom or asked how to help. I've been care giving for 3 years and it seems every day gets harder and more complicated with all the medical, financial and emotional decisions. Thank goodness for this group!

Thank you needhelpwithmom, it turned out very nice considering my mother was in the hospital from 11am-3pm. I hope you had a nice thanksgiving also.

So glad that you had a happy Thanksgiving, Elaine. 😊

My mother spent 4 hours in the hospital today for her toe that still hurts. I called an ambulance for her and I told my mother that me and my sons would meet her at the hospital. I didn’t have a whole lot of sympathy for her because she refused to go to her follow up doctors appointment on Tuesday. I set aside Tuesday to take her and she cancels. She wants to go to the hospital on thanksgiving morning at 11am. My sons and I went but they both said we aren’t staying long because we are having our thanksgiving meal at home. So we stayed a little while and went home. They called me at 2:30 and told me she was fine and I could come pick her up. So I went and picked her up by 3:00 and brought her to my house. She was on her best behavior at our house because she was anxious to see both of my sons. My sons took her home at 9:30pm so it actually turned out to be a nice Thanksgiving after all.

Very sweet of you to post this.

Beautiful message.

Memsobelle, thank you for sharing such heartfelt, and unfortunately true sentiments.

Thank you for your comment. It is isolating and lonely especially when other family members don't want to come over. I hate the holidays.

Well said