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.
Any chance you might be able to get a break and get a little time to yourself? I know it's difficult. Let us know about the sleep study.
While I was doing my "honeybee dance" I threw in a snow dance just for you.....it's snowing here right now, but not going to stick and the roads should be dry by morning. Fine with me, I would rather share it all with you...:) Sleep well and hope tomorrow is a better day for you.
Mis-thanks for letting us know how it went. Hope the whole funeral is a sad but warm memory.
Bees, wasps, it was 50 degrees here today (not normal). I got myself an ice cream cone on the way home from work. Tomorrow we are supposed to get 4-8 inches of snow. Not kidding.
My Dad's 1/2 brother passed away yesterday from lung cancer. There seems to be a big black cloud over my family. He was diagnosed at New Years, but the cancer was very advanced. Dad got to visit him a few times in the last 2 weeks, so that was good. I am doing alot of emotional support for Dad right now because Mom doesn't want any part of this or Dad's family. And I am going with him to the memorial service this weekend. Another aspect of caregiving.
Seeing the sleep study doc tomorrow for Dad's sleep apnea. Still haven't heard back from Mom's doc about adding the radiation. The calander just keeps filling up.
Had a rough time today. Sad and tired. Too much stress at work and at home. Would have posted if I could have found the time. But just thinking of all of you helped make it better.
I'll be back when I can. Goodnight and sleep well.
Vic ~ You might be the one helping me with the diaper issue. I checked out the Wellness site, but, unfortunately they're not for me. My husband Alan is still mobile, so pull-ups are easier for me than tabbed. It seemed to me that the Wellness site was trying to make their product seem unique; e.g. other brands are just cotton fluff, as opposed to their technologically advanced filler. I can say with complete certainty that other diapers don't use cotton fluff, since Alan went through a phase in which he hand-shredded his diapers. Wellness does have good absorbency (87 oz.), but so do many others--just not the ones you pull off the drugstore shelves. Abena is one (50-120 oz.) and Dry 24/7 (93 oz.). The lady that comes to give Alan his shower turned me on to diaper liner pads. Think high absorbency sanitary napkins. For nighttime I use Abri-Let Anatomical pads (shaped like a figure 8 for more comfort between the legs) that give me an extra 50 oz. Mind you, leakage will always be a problem for side sleepers, as their weight will compress the liquid in the diaper.
Alan shares our king-size bed with me. I use a full-coverage mattress pad under the sheet and a 34x56" waterproof pad under his bottom, but he invariably rolls off the pad. This means soiled full-coverage mattress pad, two sheets, under-bottom waterproof pad and a blanket--three loads of laundry. Then of course re-making the bed, and I have a bad back and COPD. I'm going to see if I can fit a twin-size bed in our room. He won't have room to roll off the bottom pad, and, even when I do have to change the bed, I should be able to shove it all in one load.
Jam ~ Thanks so much for all the Dead Documents info. Yes, I do have Alan's POA, both medical and financial. The information you gave is pretty much the same as what my attorney layed out. The problem is, when you're dealing with a parent, all assets are attached to them--their income, their home. Your income and home aren't a consideration in their care, so your standard of living isn't affected. When you're dealing with a spouse, his income is also my income, his house is also my house. So right now, there's his pension and both our SS checks. The Medicaid spousal monthly allowance is little better than $2,000. Our house payment is almost that much. There would be nothing left for me to live on.
And selling my house is NOT an option I'll entertain, no matter what I have to endure in caregiving. I lived a large portion of my adult life as a single mom with no child support, sometimes going without food and clothes so I could feed and clothe my kids. I vowed to NEVER go back to scraping for pennies. God has been helping me with that so far. I just have to believe He will continue. Thank you for your part in trying to help.
I know with ruth, it was pads under her sheets, pads under her, and double diapers, and I still had to change the bed, sometimes in the middle of the night...so I know how frustrating that can be... let us know how the new "night pants' work... may be something to pass along.... sorry you are so tired.... hope you got a nap in..... more later, love ya'll
Starri..he is in a hospital bed..we have pads under, he wears undershirt at night and that gets wet too. Hadn't thought about cloth diaper am thinking if using other disposables that don't work so well to cut out and use on sides if these others don't work. Just want him to be as comfortable as possible.. You all know how it is. Have to get online and do some education on the procrit and this bone marrow deterioration. Hate that he was diagnosed with the bone marrow deterioration so many years ago and when they moved here all records came too..and in the last three years this may have played a major role in his health decline and I never even remembered... Sucks ..can only go from today right!? Makes me sad though. Oh well. Been a busy bee today from bathing pop and laundry to poop and lunch and more staightening up for the cleaning lady to come! My sweet momma wants everything I place.. Oh well waiting for her to get through so I might get a nap in before I make dinner.
Prayers...V
I have met with financial advisor this morning...making some changes that need doing.....been thinking more about long-term care and death benefits...for me and hubby. Having no children, we must do this while we are able..I did find out 2 very important things today.....
1. 1992 was 20 years ago.......doesn't sound very important, does it? But the significance of it? Time flies....what we needed 20 years ago does not pertain to what we need today........and the future is 20 years closer.
2. Insurance policies need to be looked at periodically.....not just put in place and forgotten....we saved a lot on car insurance just because I quit working and was not on the highway exposing myself to traffic daily....life insurance premiums are changed by the companies and a smaller premium could garner more benefits.
Heavy subjects, but caregiving will get you thinking in ways you never thought. And believe me, I did not think of these while I was elbow deep in poop and stinky butt, doc visits, and medications
Am off to get my hair done so I don't look 60........phhhhhtttffftt...who do I think I am kidding? TTYL
Jam, I can just see you dancing around the yard, the blind dog trying to get away but getting under foot instead.. Thankfully that bee sting didn't end up in a trip to the hospital.
Ladee, I am glad to hear that you and Marie had a good day, those are always nice. Even better when you are trying to get back up to speed after having a few days off. Hopefully those days allowed you to recharge your batteries.
I received the POA just a couple of weeks before my Mom passed, I live in small town America, where folks still take care of each other. It goes back generations of care giving by family, Mom was taken care of by family, her mom, etc.. I was lucky in that Mom's doctor talked to me.. of course he didn't have much of a choice, I was dead up in his face about her care.
You can try and mess with me if your brave enough, but don't even let a thought get within a mile of your head, if your thinking your going to mess with those I care about. I went so far as to book a appointment for me to see her doctor, so that I had his undivided attention. I didn't care if it cost me the 85,00 to see him, I wanted answers, he didn't end up charging me, and I got 20 mins of his time..
Vic I hope those undies come in soon, have you thought about using a cloth diaper for added absorption?
They never let me down.
I've seen your posts on Grossed Out, too. It's another wonderful group of angels whom I've come to know and appreciate.
What I found is that I may have a situation in my life that I haven't seen addressed on a certain thread so I look around on the site. Sometimes I find something that will help me and I take it back to my favoritiet threads to share with the others. You never know who might benefit or who's life you may touch at just the right time.
I've been so supported on the AC site by angels from all over the world. Open your heart and welcome the warmth and camradarie around you here. You can always find a safe haven somewhere here.
You might also go to CareGiver Live. Ted has created a neat site (still under construction) where you can chat in real time. He seems like a great guy and some of our friends here are also members there to chat with. Good luck, hon. You are in great company! (((hugs))) Bee
Toe is fine..........I will live to dance another day!
Will see if I can try and help with some questions....and if I don't touch on something you have asked just holler.......
Sheila.....Medicare and Medicaid are two entirely different programs. I see by your age that your husband is probably already on Medicare? He can go into rehab/NH straight from discharge and Medicare will pick up the bill UP TO 100 days. It's usually not that long, but it can be. Then in the meantime, apply for Medicaid.....your admittance form for the NH will say "Medicaid pending". Normally NH's have only so many "Medicaid beds" so check with the place he will be. A lot of entities are leaning this way more because it's guaranteed payment, unlike private pay or insurance. Then in the meantime you can go to your local Social Services office and you should find plenty of help in finding out what else you need to do for your state. Each state has their own little quirky "laws". For instance Mo has a "5 year look-back" law. But the universal law for spouses, is that when one is in a NH and Medicaid is paying, the family home is exempt and a certain amount of income is set aside for the spouse still at home. Medicaid aka the government can't take all of your money. There is a wealth of information on the Internet, although I will say the actual Medicare/Medicaid site is hard to follow. The ideal person to help will all of this is an elder care attorney. They know what you can do to preserve yourself as well as care for your loved one.
What we did for the col when we had all of her Dead Documents rewritten, was to combine her bank accounts into one and designate it an Irrevocable Trust. It's done all the time to preserve the money. We could have applied for Medicaid to pay for her NH care, and in doing so, they pay even though she is sitting here with ample funds and a separate house that she used to live in before we built her house onto ours here. So while they are paying, her money sits safely in her account, we can use it for her care or to pay any bills she may have. And her house does not have to be sold until such time as we are ready to sell it. Then when she dies, we would get a bill from Medicaid for everything they spent on her and we would have to reimburse them.......if there is no money left to pay them back and we can show the money was spent on her care, then the bill is forgiven. Either way, there is a "spend-down", one is just not right away, and there is nothing to spend her money on except clothing, etc and how much does a person in a NH need? The col's funeral expenses are already paid for. So we decided to just continue to pay for her care as private pay. She has enough to provide for her for about 8 years and if she is still alive then we will apply for Medicaid and I will have the records to show where her money went. And by then it will be simple, with her income monthly now, we have to supplement about $1000 more to cover the NH bill so there wouldn't be anything left.
Sheila do you have POA for your husband? Even though the HIPPA laws are in place, as the spouse you are entitled to medical information on your husband. Have that done as part of the Dead Documents. My husband and I did ours when we did the col's. Unfortunately doctors these days are busy and their heads are full of information and sometimes you have to just stand in front of them if you want to find out anything. When my hubby was still working and was on shift, I did not want to talk to him. He would switch into "doctor mode" ......he could have 11 rooms filled with several serious cases...he was an ER doc.....and anything I said went in one ear and out the other. I would always wait for him to call me. Anyway, their brains are full and they have each patient categorized in there and when you ask them to stop, it's like....huh? Be patient...:).....but don't allow yourself to be pushed off into a corner.....as I told one of the other ladies here, sit your butt down on the floor in front of the door and don't let the doc out of the room until your questions are answered. If you aren't satisfied then go find another doctor. Personally, I don't want a younger doctor because they are still green and don't know squat.....an older one is tired and sick of the system.....one in between is great.
mis.....glad to hear you made it through the last couple of days....Grandma would be proud of you.
I hope everyone has a wonderful and peaceful day! After writing this book, I need a nap.......
Happy Trails,
Jam
Re dad and his undies...daytime we use pull up depends because he can tell me pretty much when he has to go..lately We have had a problem at night with side leakage as his personals..go in that direction! Arghhh. He is in a hospital bed and we have pads etc.. But it would be nice not to have as much leakage during the night so he can rest better. I thought I would try The "Wellness Briefs" supposedly NASA inspired but they tout less side leakage. Guess we will see..have to check order today or reorder.
Jam ~ I was interested in the info you presented about the trust/spenddown re Medicare covering a NH for your mom. I'm going to double check with my attorney, but I don't think it would be applicable for me, because I'm dealing with my husband, rather than my parent. You aren't financially responsible for parents, but spouses share financial responsibility. So I'm terrified of what's going to happen if I find myself unable to follow through with caregiving for my husband Alan. Right now he's in a NH rehab recovering from his third stroke since April. If he hadn't had the stroke when he did, I don't think I could have made it one more day from being his caregiver.
Vic ~ What's the problem with your dad's undies? I'm becoming somewhat of an unwilling expert on incontinence and it's necessary supplies. Maybe I can help.
RW ~ I can relate to your issues with the lack of communication from your mom's medical providers. I brought my husband to the ER the day before Thanksgiving, and he's moved through the ER to hospital admittance and on to a NH rehab facility. Despite dozens of requests along the way, today is the FIRST time I've spoken to ANY doctor! I find this totally unacceptable. I don't even know what the official diagnosis is--brain damage from the stroke with expected improvement as the brain heals or Alzheimer's, vascular dementia with progressive deterioration.
Well, it's 7am. Most of you are probably getting up about now. I think I'm going to head to bed for the night. I've developed this odd habit of staying up vegging in front of the TV til the wee small hours, then sleeping until after noon.
Ditto to what seeme and jam said on the poa.
stormy- didn't know that you smoked, either. I was suppose to quit on Thanksgiving but that didn't happen and then on New year's and still haven't yet. I need too and I will quit once things settle down here. It's kept my sanity.
ladeeda- glad that sonny and marie are doing good.
Jam- how's the toe doing?
As for how I'm doing? Yesterday, it was rough, but my hubby and I made it through it. Our niece sang and I managed to get up in front of people and read a poem that one of my fb friends found. Grandma gave me the strength to do (I'm not one to stand in front of people and talk) it even though she's gone now and I added some grandmaism to it things that she use to say. It was beautiful.
We didn't have a dinner afterwards. One of our long time friends took us out to eat afterwards and then we went our to our nieces and her mom's (the one that I wished was my sil, the girls adopted mom) to spend time with them and the great nephews and niece. The little ones sure make it easier to get through this.
I'll check back in a little later. Thanks for all of the hugs, prayers and support.
Your neighbour? This is not the first time I hear stories like this. It's useless to tell her she is wrong, I am sorry because that man seems dangerous too... I mean, he is not just a con!
about your mom, do you have poa and that avalanche of paper work to help her get another doctor??? Can she be convinced to get another Dr... we had to finally intervene with my dad because the doctor he had was killing him with diuretics.... the old man wasn't happy, but he almost outlived us all.... sometime you gotta do what you gotta do....
And most of us are asleep this time of night or are changing pants and staggering back to bed.... I woke up sleeping on my back, and was apparently snoring, lol, and had a dry mouth.... so had to get something to drink....gotta go back and get some more zzzzzz's.... I'm sure others will have some suggestions about your mom... hugs and get some sleep lady.....
that's it for me