This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
Hope all of our friends have had a wonderful day..........
Love and Hugz to all,
Jam
My point here is that I just can't imagine what this poor woman is going through. I whine and get mad but I am not in constant pain from carpal tunnel or a pinched nerve in my upper neck. My knees work. I can see and hear. I can cook my own meals and do my own laundry. I am in my own house. I can walk to the mail box and get my own mail. I don't have to wait for someone to take me to Church. My children visit often. I don't feel like a burden.
I just realized that what I am doing is a privilege and that some day I will be able to look back without regrets and with the good memories. I know that this is temporary and that one day I will actually miss the complaints that I can't do anything about, her childish behavior and repeated stories. I live a pretty simple life style so its easy for me escape even briefly to my garden or a book. I actually rescued a hummingbird the other day which must sound incredibly stupid, but to have felt his vibration in my hand when he must have been very near death was sooo uplifting! If God is looking out for that tiny bird, surely he's looking out for us.
All caregivers are in my prayers. Lets be thankful for what we have and find the simple pleasures in life.
Starri, I am very happy you are going to make this trip. Take the camera with you and make many beautiful pictures! About "seroquel". The doctors who visited my mother belonged to different facilities and they didn't know each other. And though, they all said the same thing! It seems my mother is at such an advanced stage of the disease that there is nothing you can do, except keep her mildly sedated. I think it depends on the person, too. She is restless and she has to be kept quiet, otherwise she gets into trouble! (she opens the car door abruptly, for example, when she has decided she has to get out of the car....)
Johnny, send Don Julio to my house. It could be fun. We could get drunk together, my mother, me and him!
Jeanie, good luck in trying to keep 3 generations in the same home all together and happy! It must be a hard work!
Seattle was beautiful and very green. A clean city and a very big city. Traveling alone was fine. No need to have worried. I had those behind the ear patches for motion sickness and they worked great. I highly recommend them for traveling. As for my restless legs, I took my knitting with me and the intricate pattern I was working on kept my mind busy with counting. So, yes, I would definitely travel alone again. It was a great experience for an old lady!
Jeanie, You are a wonder taking on your in laws when you are so yound and with little children to raise. They are lucky to have their grandparents so close when so many children don't even have grandparents today.
Jam, glad to hear COL is behaving!
Dmd, Sorry your experience was so stressful.
Time to get Mom ready for bed. Hope you all have a good night.
I'm sorry you feel that you had a bad experience with hospice. My perspective is that none of us know when "our time" will come. We all want to live forever but the ultimate outcome cannot be stopped even by more advanced medical care. Only prolonged. And in the end, it's all the same. I see your father had a lung disease. The alternative to hospice would have been to keep him in a hospital, on a ventilator, kept sedated in a coma, without hope for any kind of quality of life. The medications that hospice use are not to hasten the end of one's life, they are to make the patient as comfortable as possible and to lessen what anxiety there might be. A doctor's or nurses training can only go so far, then when there is nothing left for them do, the care is turned over to a higher authority. They are, after all, only human.
Again, I am sorry for your loss. Maybe speaking with someone from hospice will help you to put the ordeal in a different perspective and you will understand what they did for your father.
Jam
I'm not sure how I feel about the hospice experience. I am sure he died much sooner than expected in hospice. I am upset that the hospice nurses and doctor did not seem to have any idea he was going to die the morning he did and that I was not able to be with him when he passed on. I do feel that the drugs they give in hospice do "help" the patients to pass on and I don't feel good about that. I do feel if I had gone with traditional medical treatment he would still be here today. I doubt I would ever put someone in hospice again. I do plan on talking with them this week to find out why they didn't have an idea he was dying and why I was not contacted sooner so I could have been with him.
The family drama surrounding his funeral arrangements is certainly something I could do without. I feel like apologizing that he passed away at a time that is inconvenient for people (graduations, vacations, fathers day). I do wish those around me could take a step back and realize that he wanted to live and neither he nor I planned to make things inconvenient for others. Undoubtedly people just do not know how to handle illness and death well.
Thanks to all of you here for your support and advice over the past few months. Some of the most helpful support and advice came from those at this sight. I wish everyone here the very best with your own caregiving situations.
Yes, it will seem like you are waiting for something in the back of your mind... but it won't take long for the freedom of the road to do it's job, and you'll be enjoying yourself. And apparently much needed time with the hubby.... try not to work too hard today... hugs across the miles to you..
Seeme, keeping in touch with everyone is going to be as easy as finding a cell signal and making sure the laptop is charged or has power available. Most if not All McDonalds now offer wi-fi, a lot of motels/hotels and even some camp grounds do. We have a air-card so that if we have cell signal, we have computer.
We got it because one of the hotels that we stay in down in Columbia got on my nerves over their lousy wireless connections, if you could get on, it'd stay on maybe 5 minutes and you'd have to start over. It worked out good, that it decided to irritate me at that moment. As just a few days later, the service went from being unlimited to limited for the same price. I had been telling Glenn "no" we didn't need the extra bill, and McD's offered internet. But now bill or no bill (89.00 per month) we have internet access no matter where we are as long as there is signal. Glenn's had it with him on trips on the bike, pulled over to a rest stop, fired up the computer and was able to move money from one bank account to another and find directions, etc... I fussed about the GPS he bought me till the one day I was out somewhere, got myself lost and it brought me home, paid for it's self right there, as long as I know I can get home that's all that matters.
After the irritating call out of the "eldest" last night, I am putting off doing any thing like packing up till maybe next weds. We go tomorrow to get the camper, it's cute, you slide it into the back of the truck, tie it down and then when you are ready to camp, you take this crank and crank up the top of it, so that you can get in and stand up, has a/c, a furnace, sink, fridge and a little two burner stove.. No shower or potty, but that can be dealt with.. porta potty for when you are out in the woods.. showers can be got at the next stop you find.. or just a wash cloth and soap beside the camper..lol..
This is the first time in my many years that I have been looking forward to not being tied down somewhere. Going to seem weird at first, as I have always been kinda attached somewhere for something, kids, family, job, etc.. still have the kids, their grown and on their own now, family, still have some of them, but their adults and mainly capable of doing for themselves. I haven't worked in 2 years now, between trying to care for my husband, my mom and my brother, the fact that I was getting more and more disabled myself, I could not pull it off anymore. When the hubby had to have his last knee replaced, and my doctors appointment book was showing appointments almost every three day's for three months, then my knee snapped loading wood one day, that was it, I could not do it anymore, the snap turned out to be arthritis rearing it's ugly head. I went and filed for my disability, and just under 24 months later, it was approved. The money we're using to get our camping stuff is from the back pay, and the first check should arrive on Tuesday evening. One of the things we are going to do on this trip is get the divorce certificates from past marriages, so that we can prove that he and I are married to the VA, and he will be able to get more money allowed for me, and when something happens to him, I'll have some kinda pension coming in, in addition to what I will be bringing on my own. Depending on what kinda place you want to live in here in SC, there are houses/mobile homes/apartments, that can be found for between 300 and 500 per month, cheap yes, but going to take a big bite out of the 935. I'll be getting on my own.
Anyway, debating on getting the hubby up, we still need to get the boxes out of the back of his truck, get them over to mom's, then work on getting the shell off the truck and all the "stuff" he has piled back there so that tomorrow we can go and get the camper and start getting that ready, I'd like to take off by the end of July, mid august at the latest, don't want to end up somewhere in snow up to the tops of the tires.
Hugs and Love
Carmen
Keep reading and checking in with us and we will attempt to keep you "fueled".....:)
Love and Hugz,
Jam
Rossella , a trip to see you, I will be saving for years for that to happen, maybe we will be so old by then we will not recognize each other at the airport,,, but something to plan for..... hope you are not working too hard and are able to go to the shore once in awhile..
Johnny, how great that you got some down time... and happy to hear your wife enjoyed it too getting to visit her daughter... tell your daughter we said thank you for giving you a break and being so loving with her mom...
Jam, I wish you could share some of that rain too. It got up to 106 today... over two weeks of triple digits and no rain, fires are everywhere.. it is getting stressful for everyone...
Deefer, yes I am very happy with my new job.. I acually look forward to going to work.. love them both and Sonny is just a happy go lucky guy with a great sense of humor, he can't find the bathroom, but he is smiling when he asks where it is...
How are things since your trip? didn't last long enough did it??? Now that you know you can travel alone, maybe you will get to go again soon... like me going to see Rossella, I would have to get a job over there to get back home, but it sure would be fun...
Well, I am going to go read for awhile and rest my brain... need to get out of here for awhile tomorrow and as Seeme told me, can't spend money in the looney bin, so might as well take a little of my saved money and go have some fun tomorrow...
Love all ya'll and hugs across the miles...
Johnny....have a pleasant Father;s Day ...........you sure deserve it......
Deefer, does it even seem like you had a vacation, or is it just a fond memory? Amazing how quickly the time can fly....
Mom has been given ambien, xanax for anxiety, lorazapamand I can't remember the other one off the top of my head. Well, she was just up again....loks like we are working on a hour and a half schedule so far, and since it is am, I will turn it and maybe get some sleep before that next time.........zzzzzzzzzzzzzzzzzzzz