The Caregiver... How are YOU doing today?

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The Caregiver... How are YOU doing today?

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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.

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W windytown Apr 2015 · Answer 1 · 2015-04-12T23:33:17.000-0400

Prayers sent for you and MIL gawomen. Hope she is able to make it in to the doctor on Tuesday. You need some answers. With all of her maladies, I don't understand why the doctor is trying further treatment to 'cure' something.

I hear you about a loved one dying alone with just you. It was beyond my personal skill set. My dad spent his final days at a hospice house with 24/7 care. Of course we were there too around the clock, but they specialize in the dying and made it not so scary. We could just love dad and hold his hand and be there for him, honor him, without all the physical aspects that come with dying from cancer. It's not pretty, in fact it's awful.

You sound like a strong woman. I am too. Sometimes you just have to know when it's time to let others share your burden. I will be thinking of you at this awful time in your life. ((Hugs))

G gawomen Apr 2015 · Answer 2 · 2015-04-12T22:26:29.000-0400

I really sympathize with all the caregivers here. I know it is the hardest thing I have ever done. My Mother in law is dying i think, her brother died with the same cancer two years ago. He did not have kidney failure but she has chronic kidney failure. Just over the last week I started noticing things that she did and I googled it and realized this was related with end stage renal disease. She seems to get lower everyday. She has a doctors appt on tuesday with her cancer doctor. I have no clue whether she will be able to go. She has trouble walking now. She is very weak and wobbles with her walker. I follow her around because she is almost falling because of the weakness. My husband and I had agreed to just let this be the way she goes because she has 3rd stage Multiple Myeloma, (end) Chronic kidney disease, major heart disease, and congestive heart failure. I am beginning to wonder if this is soon. a Doctor once told me that death has no time table but I am getting really fretful over this because I hate for her to die with just me here at the house by ourselves. I think once the doctor see's how bad she is he may tell me to call in hospice, but since he is still trying treatment it is not an option or her treatment will be terminated by him immediately. I'm just trying to do what all thinks I should do. I'm being patient. Just trying to get her through this life with her wishes to be done. i need prayer in my caring for her. Please think of me in the following days.

A antilane33 Apr 2015 · Answer 3 · 2015-04-12T20:45:39.000-0400

Let's see, how do I feel today? Do I feel?? I feel like I just DO and DO and DO so there's no time to feel. Still no luck finding 24 hour care, still doing bed baths on a 94 Y/O 167 pound baby, still trying to get him to eat a meal at least once a day, still coping with his legally blind wife as well, still taking the complaints with a smile (I lie), gave up trying to get him to the bathroom on time (when we get there we get there, then I clean up everything in between), still cooking what he doesn't eat, still putting the TV on to what he used to watch but hates now, still loving him every minute of every day. That's how I feel.

S SherylBeth Apr 2015 · Answer 4 · 2015-04-12T19:02:51.000-0400

We had a surprise birthday party for my moms 86th birthday yesterday at a little restaurant she likes. I told her it was she and I going, then some of the family was already there and surprised her. It made her happy to have some family around...a couple grandkids and great grandkids. My sister, who has had a few strokes and also has cancer, was able to come. My other sister passed 10 yrs ago, 2 grandsons died of overdoses within the same year 2 yrs ago, 1 grandson is currently in a rehab facility, and one granddaughter is not around because shes an addict, and 2 other grandchildren havent been around for years.. So the remainder of the family was there and it seemed to make her happy. I did notice that shes having trouble now remembering who is who...which is troubling. Im glad we had the party for her since I fear by her next birthday, she may not know some people at all. Scary and sad thought.

5 57twin Apr 2015 · Answer 5 · 2015-04-12T10:26:13.000-0400

Couldn't find my iPad last night I remember taking it to Dad's thought I grabbed it and just came back from a short visit as it was in his room.
One of the aides mentioned to me that dad was very upset yesterday as his new theme seems to be that mom died but he didn't go to her funeral. I asked what TIme this occurred as he was fine at 3 pm. She said after lunch until probably shortly before I arrived. Then it started up about 5-8 pm. I told her my aunt and uncle came at 3:30 and perhaps seeing my mom's sister triggered it? It seems to be his short term memory is getting shorter and he is having more of these upset episodes. Another stage into Alzheimers? I asked him to sit outside for a while as it will be nice and I do not work tomorrow so I will pick him up and we can go for a walk.

W windytown Apr 2015 · Answer 6 · 2015-04-12T10:23:58.000-0400

I am truly sorry for your hospice experience with your brother 195Austin. That was awful.

Our experience with my dad was the complete opposite. They were totally supportive and available 24/7 and there were no charges, even for meds.

I guess, like in all of life, their are good services available and bad ones. If someone has an experience like you did, I would strongly encourage them to switch to a different hospice provider. My condolences on the loss of your brother.

1 195Austin Apr 2015 · Answer 7 · 2015-04-12T08:43:10.000-0400

If I had it to do over again I would not get Hospice involved get a good Visiting nurse and an aide who can do cares and meds if necessary Hospice was not helpful for my brother and were even annoyed that they were called too often to visit his home-you have to hire your own aides anyway and the first agency was horrible-the first aide was horrible and the second did not even have training to empty a urine bag and the third aide from an agency suggested by Hospice did not know the signs of end of life a regular aide is 200 dollars a week and an aide who can give meds is 500 dollars a week extra the Hospice nurses who did come in only wanted to come to the house once or twice a week and as I said were upset to be called in more often an did not give the wife support or even explain his time to pass was close- and when they were there mostly did paper work and only spent minutes with my brother-I was very disappointed with Hospice because I had heard good things about them in the past.

V Veronica91 Apr 2015 · Answer 8 · 2015-04-12T07:07:18.000-0400

Gawoman you are making all the right decisions. It is time for hospice now not in a few weeks. I don't know what her blood work looks like but the Drs do and should have given you a probable time line. Now nothing is set in stone but it is not fair to leave a patient out in never never land there may be things that need to be done such as legal paper work and people she would like to see before the end. Now I am not suggesting you tell her that would be very unkind but if she asks she should be told the truth as gently as possible although she probably already knows. If you get hospice now there will be no need to drag her to see any more Drs so I would advise you to call them tomorrow. If you think that would scare her you can wrap it up a bit and tell her you are calling visiting nurse services and they need to send someone out to find out what kind of help she needs and and whether she would be more comfortable in a hospital bed, things like that. if she asks you can just tell her they usually come in when the Drs say more treatment would be too hard on her and she will be more comfortable looked after at home. Without seeing her and and not knowing the facts from your description I would guess she does not have more than a couple of weeks and she will decline very fast during that time and need 24 hour care. Now remember this is a guess based on my experience and not written to frighten you but you seems to be seeking answers. When you call hospice they will tell you what their evaluation is and how things are likely to go

B bookluvr Apr 2015 · Answer 9 · 2015-04-12T03:01:50.000-0400

gawomen, I'm not familiar at all with this. I agree that it's best to not let her know that her body is shutting down. I'm sure, deep down, she knows this. Just be there for her so she knows she's not going at it alone. I guess it is true that all those abuses she vented to you was her vent towards how her health issues. You just happened to be the closest one there for her - to get the brunt. You're a real trooper. {{Hugs}}

G gawomen Apr 2015 · Answer 10 · 2015-04-12T01:36:44.000-0400

My Mother in laws kidneys are failing. I know they told us in the hospital last week that they were really bad. There will be no dialysis, for her having the 3rd stage Multiple myeloma and her heart is very weak, being 85 I wouldnt even dream of letting the doctors talk her into that one! They already have wreaked havoc on her thin frail body by putting her thru chemo when there is no cure for Myeloma and then another form of treatment, and now steriod treatment. I ask them when is enough -enough? They said to me well with no treatment how long do you think that will last? I said I dont know...how long do you think she would last yourself? They said they did not know. Who is trying to play God here? I have noticed some strange things in her behavior in the last few weeks, she has stopped eating meat totally...and her body had been itching like crazy. I thought it was from radiation she had 2 weeks ago...but come to find out these two things are symptoms of last stage renal failure. I went in on the internet and typed in various methods of "End of life, Cronic kidney failure-and end stage renal failure symptoms" out of the 10 basic symptoms I could count 7 truthfully- so now me and my husband have decided not to tell her anything about it-because it will only create new anxiety in her feeling like she is dying. We have also decided not to involve any more doctors unless it is a regular appt they have already made for her. We will try our best to give her the least painful death with Palative care and when its definately time, we will call hospice which I feel will be within a week or so. If anyone knows more about the kidneys please tell me of your experience. I know its not looking good here. She is coherent, but her mind has been wavering-she is getting mixed up an dreaming alot of weird things.

5 57twin Apr 2015 · Answer 11 · 2015-04-11T19:14:13.000-0400

Well dad had is visitors today and I am sure he did not know who they were :(. Did not need all the vaked goods either- well they are taking them home. Dad pretty much said nothing which is pretty much standard for him though when I came to his room he was watching The Masters on TV! First time I can ever remember him watching golf. But my aunt and uncle were not talking too much either- my cuz and I did not of talking. The leaving went ok- that is dhat I am always concerned about.

G gladimhere Apr 2015 · Answer 12 · 2015-04-11T00:04:35.000-0400

Jude, good for you! Soon after I started caring for my Mom I wrote ber doctor a letter about how frustrated I was with trying to figure oit whatnwasngoing on with her! I also thought he should be more abreast of research in AD. I had heard about two different studies and this geriatrician hadn't heard of either one of them. They are supposed to let patients know of advances in the field. Isn't that their job? So many feel all that is necessary is to take vital signs, put them on a scale, call in refills for prescriptions and check for UTI's in case of sudden behavior changes.

P PhoenixDaughter Apr 2015 · Answer 13 · 2015-04-10T23:10:50.000-0400

Im anxious today Mum has had 3 seizures, is in hospital and noone will tell me what that actually means in the grand scheme of things or perhaps its just another hurdle on the road to wherever that road leads. The one thing that made me mad and smile at the same time was when a doctor (clearly of a school where he truly believed patients should do as they are told) said to me quite aggressively...does she understand orders...I obviously gave him a weird look...he altered the question to cant she follow commands? ...I smiled sweetly (always a time to know that you are on dangerous ground)... " My grandmother marched in favour of the suffragette movement....the likelihood of my mother (or me for that matter) following orders / commands of the like you have just given are absolutely nil. If you want her to do something I suggest you start speaking to her like a human being not a chattel" ....as I was just finishing my verbal assault (doctor was clearly amazed I dared speak to him like that and turned to face my mum) my mother swung her fist into his face - now she had no force behind it she was waaaay too frail today having had 3 seizures one after the other but his face was an absolute picture. Arrogant toad that he was. Most of the doctors she saw today were not from our country but were an absolute delight - this one clearly brought his culture with him and paid the price .....one quick glance round the ward showed at least 2 doctors and 3 nurses sniggering so I imagine he is always like that.

B bookluvr Apr 2015 · Answer 14 · 2015-04-10T05:58:49.000-0400

Sinus/allergy bad today. My boss and I have this problem. Today, he had it bad. I kept massaging my face - delaying the sinus pressure. Boss had to leave early at 1pm due to a very bad headache. My headache was crawling up all afternoon. Right side face, head. Press my face, feel squishy on the nostril and cheeks. Drank lots of water...couldn't remember why just know that I should.

Boss still have not approved my vacation leave. On Monday, I will ask him if he's still thinking about it....

W windytown Apr 2015 · Answer 15 · 2015-04-09T21:11:01.000-0400

57twin, I'd talk to the AL's kitchen manager. My mom's AL will provide pitchers of ice water, carafes of coffee and a tray of cookies for meetings and visitors if asked. I imagine there's a minimal charge. Never done it myself but I've noticed other families doing this in the bistro/sunroom where she lives. It sure would make it easy for you. :)

C Countrymouse Apr 2015 · Answer 16 · 2015-04-09T19:59:52.000-0400

Maldorasi, can you discuss how you're feeling with the hospice providers and ask them for more support?

57twin, isn't there anyone at AL you can ask about catering for visitors? They might even have caterers they can recommend who can handle the dietary requirements - and besides, it might be courteous to give them a heads-up that there's a potential bathroom crisis on the way..! But I hope the visit goes really well for all of you :)

5 57twin Apr 2015 · Answer 17 · 2015-04-09T19:38:38.000-0400

Question. Saturday my aunt (mom's sister) and uncle are coming to visit my dad at his AL. They are being driven by my cousin and her husband. I am planning on using the sunroom for the visit as I do not have enough seating. Do I bring refreshments as they are coming at 3:30 in the afternoon. And of course I now my uncle has dietary restrictions due to kidney failure and having a colostomy.....

M maldorasi Apr 2015 · Answer 18 · 2015-04-09T19:06:58.000-0400

I take care of my 87 year old mother who has chf, a-fib, copd, etc. now she hurt her back by doing something changing her clothes that I should have helped her with if I had known what she was doing. I happened to be on the phone at the time. So she got inpatient and says "she didn't want to bother me." Well she hurt her back and is in a lot of pain and on pain meds for the pain in her chest and her back. The hospice nurse also believes she had cardiac dimentia or is starting to. She is not totally immobile yet. I am finding myself not wanting to do this any longer. I am at my wits end. She is under hospice care at home. They are great. But I am her main caretaker. We both live with my sister and her husband right now who both work. I am essentially on my own. I have weekends off thank you God. I don't know how to tell my siblings that I do not want to do this anymore. I want to be able to go and visit her and not be her caretaker. Just see her as my mom and my as her daughter. She is probably going to be devastated. I feel so guilty feeling this way but it's the way I feel. I want to be done with it. Any suggestions?

S SherylBeth Apr 2015 · Answer 19 · 2015-04-09T18:20:29.000-0400

Noticed moms having trouble sometimes with finding a word...and sometimes using the wrong word...new symptom. Also was over the other day and i said, hey lets make a pan of brownies! (The box had been in her pantry for months and she used to make them ALL the time). I got out the box and the pan...she stared at the instructions and did nothing...she couldnt follow instructions. I just had her get the items...egg, oil, water...and i did the rest. I know she cant balance her checkbook anymore and ive been doing that for 6 months or so, but this is the first time ive seen this symptom of not comprehending something even though she can read. Its so hard seeing new symptoms arise...each time, its like being kicked in the stomach. Sad that people are being kept alive longer by medical advances and yet the quality of longer life cant be enjoyed because of these diseases. Were having a birthday party for her on saturday...86 yrs old.

1 195Austin Apr 2015 · Answer 20 · 2015-04-09T11:11:51.000-0400

It is cool but not raining -getting some yard work done -now uncovering the rhubarb bed the plants should be poking up soon-feels good to be outside.

B bookluvr Apr 2015 · Answer 21 · 2015-04-09T09:48:00.000-0400

Veronica, I figured the connection of asprin and Motrin. I Never Ever had a nose bleed before. Then my doctor prescribed Motrin about 2 years ago - for my headaches. I would take it sparingly due to my aversion to pills. But that last bout of migraines, I was popping One Motrin a day, every day. Then one morning, I woke up and felt something dripping from my nose, I immediately got off the bed and went to the restroom to check it out. It was blood, coming out of my nose. The past 2 migraines, I took Excedrin Migraine. On the 2nd bout, my nose had a tiny bleed. I need to check the box to see if it has asprin. Almost midnight. Time to get ready for the night.

B bookluvr Apr 2015 · Answer 22 · 2015-04-09T09:10:32.000-0400

Yes, I'm dehydrated. I rarely drink fluid. My only fluid is a small can of ice coffee. When I eat lunch/dinner, I don't drink anything. I'm really trying to force myself to drink water. I don't like the taste of water. I brought this up, years ago, with my doctor. I tried all her recommendations. Did you know that if you drink flavored water, it exasperates your acid reflux/Gerd? The same applies for putting lemon in my water. Yes, today, at work I was forcing myself to drink water and my stomach started heaving. Thanks for the reminder. Water is very important...

5 57twin Apr 2015 · Answer 23 · 2015-04-09T09:04:24.000-0400

book make sure you are drinking plenty of water and dehydration can also caise headaches esp if headaches are mid afternoon.

V Veronica91 Apr 2015 · Answer 24 · 2015-04-09T09:02:36.000-0400

Not to answer your post Book but you had mentioned constant nose bleeds and not knowing how to stop them. You also mentioned taking Advil and/or Motrim for the pain. These are in the same class of drugs as asprin all of which can increase the risk and extent of bleeding. They have a similar effect like warfarin (coumadin) Something in the Tylenol group would be a better choice when bleeding is a problem. Never exceed the recommended dose of Tyenol because it can cause severe liver damage and death

B bookluvr Apr 2015 · Answer 25 · 2015-04-09T08:44:52.000-0400

Researching Sinus Pressure headaches. Learned something new from a study done by a Headache Care Center. I figured that most of my headaches was due to sinus - since my nose is almost clogged up.

"There clearly is some relationship between the two, but allergy is only one of several factors causing headaches. The role of allergies in headaches is probably much less than most people believe." ..... And that is why when I take the extra strength sinus/allergy headache pills - it doesn't work. Yes, it lowers the pain a bit, but it comes back within a hour......" over 97% of self reported “sinus headaches” were migraines." ....... That is why my Rx for migraine prescribed by the neuro doc works soooo well... Because all this time, I thought I was having sinus/allergy headaches, when most of the time it was migraines.... Did you know that there are different kinds of migraines? ...There are migraine headaches in which your nose is congested and eyes/nose waters as part of its symptoms.

G gladimhere Apr 2015 · Answer 26 · 2015-04-09T04:59:13.000-0400

Sick and tired of all of these middle of the night spam postings!

P PhoenixDaughter Apr 2015 · Answer 27 · 2015-04-09T03:56:31.000-0400

Kroger rather than confrontation which is natural because you are living in the real world tey to go with the flow and live in their world. It feels very odd to begin with but when you go with the flow it does flow better. I have been known to shower my mum at 3 in the morning because she was demanding it and it was easier just to shower her than go 45 minutes arguing about it (during which time I could have showered her anyway). I have been known to overrule people in shops about what she is eating especially whether something is carrot cake or not! I guess its easier for me for I have never ever done anything right in my mother's eyes and its just a worse version of that.

Let me give you some examples from this week. I dont want a shower I had one this morning (Hm no you didnt) Oh so you did I forgot lets have a strip wash instead.

I cant eat this meat you know I cant eat meat....Gosh sorry I forgot what would you like? Some chicken ... OK mum I will get you some now let me have your plate. (goes into kitchen minces said meat) there ya go. Is that chicken? yes says I lying through my teeth. Thats much better than that stuff you just gave me.

Drives me nuts but hey its easier than the angst of her anger

C Countrymouse Apr 2015 · Answer 28 · 2015-04-08T20:56:05.000-0400

KR, look up Teepa Snow's video tutorials - you can search for them in the top right hand corner of the page on this forum. She's a knowledgeable lady who really gets it. I feel for you.

K KROGER123456 Apr 2015 · Answer 29 · 2015-04-08T20:49:48.000-0400

Hello i can anyone help me How to handle the stress of taking with a dementia patient She always wants to argue About everything I say I know she doesn;t understand and there right And you don't argue But it getting where I can't do it anymore Pack it all up and leave Thanks for letting me vent

B bookluvr Apr 2015 · Answer 30 · 2015-04-08T07:24:13.000-0400

I was driving home one day, and was amazed that my head can rest on the driver's seat headrest. Since 2 years ago, my head couldn't touch the headrest. I drive leaning forward. At the traffic light, if I rest my head while waiting for the light to turn green, I get a headache. At nights, I couldn't sleep on my back because no matter the different pillows I bought - it would hurt my head. I finally found the micro bead pillow - perfect! But a bit flat for my taste. But, this allows me to sleep on my back. I'm mostly a side sleeper but I'm finding that sleeping on my side - hurts my upper back.

Anyway, with that sinus massage, I now do it when I feel my face beginning to hurt. Last night, I felt a slight headache on my forehead. I slightly swiped both hands from the center down to the side of my ears. My left hand went over the corner of my eye brow, and I heard something liquidy pop. Eeww. But, with that popping sound, the headache went away.

For the couple of mornings, I wake up amazed that I'm not stuffed up. I wake up with both nostrils working. Too bad my sense of smell hasn't returned. Maybe that's a good thing because dad's poop can get really smelly - choking smelly kind.

I still get the sinus headache though on my head (not the face). My right ear still rings at night. And I've noticed that the vertigo has cut back. Now, how can I release the sinus pressure inside my head? If I have time, I will research it. Time to change dad's pamper.

The Caregiver... How are YOU doing today?

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