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.
Today, our youngest came down with a fever over 101 and has been sleeping the whole day. My muscle relaxer that I take at night for my neck is almost working too well, but when I get up in the morning the back of my skull hurts for a bit and then stops.
Have people found their parent's long term care policy to pay for basically all of the nursing home expenses? If so, should I look for a good not for profit nursing home where her insurance would pay almost everything and she would be well taken care of?
Why do dogs always want to get up and go outside EARLY when it's raining?
CMag.....I don't have any experience with long term care policies, but I will be interested in the information you get, as I am really thinking this may be the way to go for myself. After trying to figure out how to handle the col's care, and writing those big monthly checks, I think any assistance would be a God-send.
Did a little on-line Christmas shopping this morning for grandchildren. The bigger "kids" have already been given money, so shopping for the 2 girls.
Will check on the col later.....no phone calls during the night, so all is good.
Check in when you can and let us know how you are doing today..............
Happy Trails,
Jam
Jam, let us know how the col it today.... and keep your hiney dry....
Hope we hear from everyone today.... love ya Seeme Sue..... hugs and angels to everyone...
Up early again and this time just because I can't sleep. Went to bed way too early last night I guess.
After talking with the col last night Target says this is probably the beginning of her downward decline. I agree, but then again she is one tough little bird.......but this lady I look at isn't the same one from a month ago.
ASG....no, I probably didn't write a timeline to where you could see her decline. Target and I took at week at the end of Sept and went down to Tunica, Ms. Had all the girls with the col around the clock. We noticed the day we got home that her mental status had declined in the short time we had been gone. And we were gone only 4 days. She started walking stooped over, holding onto every surface for balance, as well as hanging onto someone's arm. We bought her a cane which she refused to use, bought a walker which she had to be reminded constantly to use and still can't use correctly, bought a lift chair to help her get up and down and she would still forget it was sitting there and go flop down on the couch. All of her meals were being prepared for her, but she would still go into the kitchen and make a bowl of instant oatmeal and sometimes would have up to 3 bowls sitting in the fridge. She had to be helped in the bathroom constantly. When the girls weren't here.....4pm until 10pm bedtime and Friday 4p until Monday morning at 10am.....one of us had to be downstairs with her or constantly monitoring her on the camera. The diaper and bathroom fell to me...whenever we looked away from the camera she would disappear only to be found in the bathroom, covered in pingo, all over her hands, clothes, every surface she touched. And throughout all this she constantly harangued us to take her out to shop, to eat, told us to give her the car keys she can drive herself. I don't know how many times she would almost fall, with me grabbing for whatever I could get my hands on to keep from going too and still hang onto her. She didn't recognize that her dog needed care and would stand and look at him while he's begging to go out. She had no mental stimulation, she refused anything that we offered her, other than the tv and I finally locked out the news channels because all she was watching were the shows where they reported children being abused in some manner and I noticed a trend that when she watched that her mood changed drastically. We were in the process of just calling around to the various homes looking at current monthly prices and making arrangements for around the clock care here, when she decided to fight her way out her locked front door and the marble topped table won the fight. I took some time to run my dogs outside and she took that opportunity to try and elope and I found her sitting on the floor with her face banged up. Target made the decision right then to place her, so that's what we did. The other day I saw that Carol had written a terrific article about promising a parent you will never put them in a home, and then having to break that promise. It was on the right side of the page under Community Activity. I read it and I think it bears reading by a lot of people, especially those who might deal with the guilt. One year ago on Christmas Eve my mother went into the hospital with pneumonia and left us on the 29th..........and now the col also went on a Friday with pneumonia..........I have been dealing with this sense of dread even though I know my mother was a lot worse than the col.....maybe that's why I threw a fit because they weren't being aggressive enough from the NH and the doctor that was on call over the holiday for the group is an IDIOT!!!!!!! So that's the story of how the col and us got to where we are now. Oh and I lost 12lb during that time just running up and down the stairs.....of course a few meals were missed because I didn't have time to eat......but that's okay.
I will do a daily update after our visit today.
I hope everyone has a wonderful day.......check in when you can.
Happy Trails,
Jam
Haven't heard from some of ya'll all weekend, hope it is because you have been having fun with family and getting to relax... I have totally wasted this time off, but needed the break too...
Seeme, happy to hear you made it thru this first holiday... was thinking about you....
Ya'll please don't make me start singing, Pink Floyd's', IS ANYBODY OUT THERE... I can't carry a tune and the illegals next door may call the cops on ME for a change.... hugs and angels...
I am here with stress ... studying ... writing papers ... creating powerpoint presentations ... I just cannot wait for this semester to be over with!!!
Mom is my strongest supporter. She is always asking if I have school, am I doing homework, and asks if there is anything she can do for me to help. I just cannot ask for a better cheerleader ... even when it is almost hourly ... her heart speaks so strongly these days. I wish my Dad could see us getting along. We didn't fight per se but we always seemed to have opposing views on things and some of them trivial. I am thankful that we have this bond now, my mom and me, although it is because of her vulnerability and concern for her cognitive decline. And in my heart I see a woman who really, finally, sees me as a product of her: a very strong, loving woman.
I am also here with joy ... Mom and I went out last night for dinner and a couple of hours of gambling. That's her "happy place" and I know she will eat at the buffet (who wouldn't???) and relax by just pushing buttons and chatting with others. Once I put her on her "perch" (on the chair at her favorite machine) she can play for a couple of hours and zone out and I can take a break as well. The management knows her and when she can't get ahold of me (forgets how to use her cell phone lately) they come and find me using my card in the machine. Gosh, nothing is sacred!!! ha ha So it is a win-win for both of us. Last night she lost about $70 and I won about $114 so I was happy I won and she was happy she didn't lose "too much".
Today...more homework.
Next semester...not so many classes so not so much homework. Still deciding what courses to take; of course what courses are available depends upon the ever changing budget. We will see. Two more weeks now, then finals, then vacation ... sure need one.
Hope all is well with all of you. I jump on to read the posts, sometimes I don't respond but that doesn't mean I don't care. I laugh with you, I cry with you, I sigh with you, I pull my hair out in frustration with you ... I just don't always post. So those of you who are struggling, I pray for you. Those of you who had snippy siblings over this holiday, I empathize with you. Those of you who had a great time and got away for a while, I envy you. Those of you who truly saw the things to be thankful for ... I can relate. If you look for them, we will find them.
SDPeg
Well, pretty darn lousy. After 8 1/2 years of taking care of my grandmother - now 105.5 - with absolutely no help from anyone, she is now in the hospice wing and probably hours from death.
Don't have time to provide details now, as I am heading back to my depressing vigil in a few minutes. But I am almost certain that I could have given her a year or two more time if I hadn't agreed to the hospice care. However, it all comes down to quality of life.
She has been bedridden for at least the last 6 months, has poor hearing and vision, stopped looking at the paper altogether, has been tuning out early on our traditional 8 - 10 pm tv fare, etc. I just realized that I can no longer lift her from the bed to the wheelchair to the toilet anymore without risk of cracking a rib, or snapping some other bone. So it would have meant all meals in bed too, instead of the usual ride to our dinner table.
As of 1 week ago, she began exhibiting RAGING dementia, as opposed to her normal intermittent possibly-explainable-by-general-nastiness type. We're talking horses in the room, asking what time decades-gone relatives left our house today, and stuff like that.
Anyway, gotta go, but it really sucks because I know I could have done better than just morphine/starvation/dehydration. But even if I am right, would it be sensible for me to completely lose 24/7 more of my life for another 2 years, and go deeper into debt just to gain 2 years of ultra-low quality of life for her? Not one person I've spoken with thinks so.
More on this later if anyone is interested.
Hugs,
Jam
I am sorry if I sound cynic, but I live in the same situation... Rossella-Achab
SDPeg
Cmag – hope your son is recovering and you are from the neck thing. I wonder what will happen to mother if she out lives her capital. She used to live off the income of her investments, but in her new place she is using capital to cover her monthly costs. I think her plan is that my sister and I will support her, if her income runs out, but I cannot afford to do that, so my solution would be to find an affordable situation.
Jam –dogs do it because they can! I have done some grandchildren shopping and better get onto the rest of it. Hope the col is better. I have been reading several stories where people are between a rock and a hard place with their elders –and not only with elders – we had to make fast and difficult decisions with Gordie. The time of year must be a trigger for memories of your mum and now the col with pneumonia –(((((hugs)))) – let us know how she is
Ladee -RAIN!!!! -love the moist air –does Diva go out in it? GOWW sounds right to me
Asg – small town gossip - ugh!!! Glad you had a good Thanksgiving -yes auntie is doing some weird things -don’t doubt yourself
Seeme - ((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))) -the empty chair thing – know it well – these special occasions are hard. We lit a special candle…
Sdpeg – busy, busy time near the end of term – lots of pressure. Next term should be better and a vacation will be great – good luck with all the school work –good to have that discussion with your daughter
Brandy - hope you feel better soon – I am listening to Joel right this moment!
Stormy –glad it went well and you had someone to talk to who understands – that helps a lot – nice of sis to take lil red
Ishmael – love that name , had a student called Ishmael – 8 ½ yrs. is a very long time, and you are young, and your grandma is very old. 105.5 is a tribute to her and also to you. Quality vs. quantity is one of the big questions. Sounds like she needs more care than you could give her. Would it be sensible, considering the issues you mention? No, not at all. A little personal perspective - my youngest son was assaulted, age 23, and went into a coma from head injury. They did surgery to relieve pressure, but the damage was too great and in a bad place. He was on a ventilator and, after a couple of days, we had “THE discussion” - the one about pulling the plug. Their opinion was that even if he survived he would never be the same person, and would have very poor quality of life. We gave him to God, and they pulled the plug, and he went very peacefully. We all have a time, and we concluded that was his. Is it simple? In some ways, yes, it is. Is it easy? No. Please do come back and let us know how things are going. Thinking of you…
Beta – your mum made an amazing come-back!
Ros – agreed - guilt should not rear its ugly head and you are right, death is natural. Sometimes I think doctors prolong dying rather than prolonging living.
Everyone - let us know how you are.
Got above freezing here today – yay!!!!! Did a bit of cooking and floor cleaning – good enough. My basement renters are moving out at the end of the month and I am relieved. There will be some clean up, no doubt, and then space for storage and G’s activities, and I will reclaim the upstairs. Think I am getting a handle on my gut issues –had a light bulb turn on the other day. Delayed-reaction allergies as well as immediate ones. Something to work on! Have a good week everyone!
Love, hugs and prayers.♥♥♥
jo