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.
Veronica, when the CDC and other doctors were saying that you can only get Ebola from body fluids and not from sitting next to someone in the plane. What?! The airplane is enclosed and the air is circulated. If that person sneezes or coughs and fluids shoots out, those things can stay in the air for about 30 minutes. I told family if it's only by body fluid, then why is it spreading so fast and easily?
Strange how the US (govt) is so determined to pretend that those shootings are Not Terrorist. That the Benghazi attack was by protesters and not terrorist. Then the Ebola situation -which we can only catch it through body fluids and not by sitting next to someone who coughs/sneezes. Yet, in Canada, 2 soldiers get run over and the shooting at Parliament, and Canada immediately declared it as a terrorist acts. Times are getting bad. This is not the time to pretend that everything is fine and dandy. It's not. Our hospital is not prepared for Ebola. The Naval hospital stepped up and offered their facility if it ever comes here. Our govt insists that they are prepared for Ebola. Hmmm...heard that same thing with the hospital in Texas. And that hospital is a more advanced facility than our small local hospital.
Freq, that happened to me, too. I was the patient. I brought my older sis and SIL with me at my appointments with the surgeon. They would say something that the doctor said - and I did not recall him saying it - at all.
That's the reason I go into the exam room whenever I take my parents to the doctor. I find it somewhat comical whenever I am driving my parents home from an appointment and I hear them talking in the back seat.... it's like a Twilight Zone episode.... yikes, I thought I was in the same exam room with them with the doctor.... what room and what doctor were they seeing???
techtimes/articles/19280/20141102/cancer-drug-nilotinib-may-help-cure-alzheimer-s-disease-its-all-in-tau.htm
Also Google
Molecular Neurodegeneration
All sorts of articles on ALZ I was able to get on their email list, it's for profs but it's very enlightening
Consider the recent Ebola scare. We were told that you can only catch it by direct contact with an infected persons bodily fluids not by breathing the same air. Hubby and I were sitting here shouting rubbish at the TV (we do that a lot) If a patient sneezes in close proximity to an unprotected person you certainly can breath in the infected droplets that are released into the air. You can work that one out for yourself. Don't need an MD for that do you?.
However I stand by my comments that people do need to educate themselves and never agree to any treatment unless they fully understand the risks and benifits. If it is too much for the patient then they need to have someone with them who can either be authorized to make an informed decision or at least review the information with the patient and question everything. Drugs are very easy to look up and usually have a simple explanation for thy lay person. For example if you develop A fib and the Dr wants to put you on Warfarin or another blood thinner and you know you already have a bleeding disorder you need to know the risks and be able to discuss it with the MD
Even on this website, once in awhile a contributing author will give professional advice and I am sitting there re-reading the article again and still scratching my head wondering what in the world is being said.... [sigh]
Good for you twopupsmom. keep up the good work and continue to share. even if you only change the behaviour of one person it is worth it.
I remember recently seeing a report where two people with similar brain scans and the same amount of plaque showing, yet one had memory issues and the other didn't.... now that all makes sense that maybe it isn't the plaque. Clinical trials will start in a couple of weeks using the cancer drug nilotinib. Keeping fingers crossed :)
I really wish when doctor's diagnosis a patient with dementia/Alzheimer's that the Doctor insist that the grown child or the spouse spend some time learning everything about the disease to help them cope and to plan ahead. Set up seminars or classes for the whole family to attend and learn, learn, learn.
I know from this website here I have learned so much about memory issues, and have learned from my boss who's wife had Alzheimer's for 14 years. What an eye opener. This was all new to me. Even if my parents never get said disease, I feel so much better learning about it in case my sig other gets it, or if I get it.
One thing I have noticed are more featured articles in our local newspaper The Washington Post, which goes worldwide, regarding caregiving and with memory care issues. And more articles in the business section about reverse mortgages, about saving for retirement, and about the cost of caring for an elder at home, etc. That's a good start :)
I got a new (to dad) end table for his room but hubby will have to carry in as it's awkward for me to carry by myself.
I decided to take Dad out for Thanksgiving at my SIL's as there will be many people and little kids there which my Dad enjoys. Will take 2 vehicles though as I will want to leave earlier than we usually do as that would be quite a long day for him as it's about 1 1/4 hr away.
Speaking of injuries I was doing yard cleanup last weekend and did something with my left knee and am icing it currently. Not sure what I did.
Dad's 6 month checkup went well except he gained more weight. I think partially due to the snacks they get plus I see he was having a larger glass of juice instead of milk with meals so I asked to switch back to milk or a smaller glass of juice.
Question though dad has this darker reddish blotches on arm. The nurse han't said anything to me. Normal on elderly?
I remember back in the 1960's when seatbelts first came out, the cry from women were the seatbelt would wrinkle their clothes :P
she will love the warm blanket on her legs and hands. My Mother can't do much either. So we let her try to fold stuff from the dryer and praise her efforts.
Love to all
Good thing we have a large van. LOL
Turns out the cabin we rented was not as depicted on the website it was listed on. Very small (which was ok), but also *not* wheelchair accessible as stated on the site. Good thing Mom can walk a little bit. Wheelchair wouldn't even go through the door, into the bedroom or bathroom, and I almost dumped her out of it twice trying to get down the sidewalk, because it was uneven and sloped - and there were no outdoor lights, so I couldn't see where the sidewalk ended and the grass began! Talk about a comical pair - someone should have been behind us with a video camera.
Then there was the bathroom. Mom is very short and heavy-set. She has trouble getting in and out of the tub at home. (That's next on the list of repairs.) We arrive at the cabin and find that the pictures of the bathroom were not quite accurate. You have enough room to stand in front of the sink and toilet and that's it - the shower stall is right beside the sink, so you have to squeeze between the two, and then - surprise! - it's also FOURTEEN INCHES off the floor. So the shower is on a platform raised up 14" off the floor. Good thing we brought Mom's step stool for the van - she used it to get in and out of the shower while we were there.
All in all, it was a nice trip, and you have to laugh about these things in retrospect, but they sure weren't much fun while we were there. Mom keeps talking about how much fun the trip was, even though all she got to do was sit inside the cabin and look out at the lake - but that was enough for her. (It was rainy, windy and cold the whole time we were there.) There was ONE nice day, and we took advantage of it to go a little further north to Mackinaw City and out on 2 West along the southern coast of the U.P. Sat by the water for a while and looked out at Lake Michigan, got a couple of pasties (Cornish meat pies, a "yooper" favorite) and then headed back to the cabin for the afternoon. That's all it takes to make Mom happy - a nice ride to a place she enjoys. I took the pontoon boat out on the lake for a couple of hours that afternoon and took the dog with me. I loved it. He hated it. LOL
We did have to have a serious talk about future travel, though. Mom has always been a traveler - she gets what she calls "itchy feet" and wants to travel. Not as much she used to, but she still likes to ride. We had to have a talk about the future of long trips. I have a son in another state, an 11-hour drive away. I haven't seen him in over a year, because I haven't been able to leave Mom alone and there's no one else that can (or will) take care of her. She wanted to go with me on my next trip to see him, but she gets uncomfortable just riding for a couple of hours in the van now....I can't see how she could do 11 hours. I'm only able to go for about 5 days, so stopping overnight on the way there and the way back is not really an option either. It was sad, but she made it easier by saying, "You know, the long trips just aren't fun anymore."
Now coming into a situation everyday and not knowing what I will find, I have had to completely change my approach. Things happen at a much slower pace and some days not at all. Thank you for letting me know I am not the only caregiver that has had to make this important adjustment. Now we all do whatever needs to be done each day and the rest can wait.