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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C chrissykall23 Mar 2014 · Answer 1 · 2014-03-26T09:14:01.000-0400

My mom had a fall on sunday and her foot soon started swelling and bruising. Took her to doctor to find out she has a sprain, they immediately put her on frozen therapy and some swelling went down but she still can't wear a shoe. She is going to day care in her wheelchair but its hard for them to keep her in her chair. Im glad she is still very active but just wish she would relax sometimes. Also doctor took xray of her neck where her old injury and brain injury occurred and says its a mess. She is surprised she can even walk and move her head. She has been to specialists over the years and they can't operate because they said there is nothing that would help and she would be paralyzed. I hate watching her suffer so much. She has had so much pain the last 15 years with her lower spine narrowing, her neck damage now the RA in her legs.

A assandache7 Mar 2014 · Answer 2 · 2014-03-26T09:21:32.000-0400

Book I'm jealous... Vegetables going in your garden. It's snowing here with blizzard conditions..

V Veronica91 Mar 2014 · Answer 3 · 2014-03-26T10:51:43.000-0400

Assandache don't be too jealous of book remember she lives in tseunami (?sp)
country!!!!!!!!!!!!!!!!!!! I"ll take snow over that thank you.

W wantingtime Mar 2014 · Answer 4 · 2014-03-26T11:10:27.000-0400

butterfly....yes, I offered her a couple of pieces if she wanted them but she just pouted and refused to accept any. Now I am finding out she was getting things OTHER people wanted too...like a cousin who had asked for the dish towels. Mother told her the towels were $60 and she refused to pay that...so I gather Sandra was sent to 'collect' what others (who are refusing to speak to my mother or visit her) think they 'deserve'.

bookluvr...sounds like your engine mounts might have broken..have they looked at that? Finding a honest mechanic is hard, use recommendations from friends and if you find one do whatever you need to keep him!

This morning has been a little rough...my aunts called last night and asked my mother to go with them to visit another relative she hasn't seen in a long time. Last night she said yes, this morning she's crying and saying she won't go and (referring to her sisters) "they'll never come here again".

I wish I had a decent family but reality is, I don't. I feel so sorry for my mother to be treated like that. Yesterday, she did speak a bit of her true feelings to them..she is VERY closed about her feelings but she said "Everyone that comes in here just wants stuff from me".

Her embroidery gives her so much joy and she LOVES to show it off to people. She was more animated and happy when she was showing my aunt her stuff the other day and all my aunt was thinking about was stealing it.

R reddoglives Mar 2014 · Answer 5 · 2014-03-26T12:59:14.000-0400

Red...MIL lousy dog...has done great for the last 2-3 months...up until 3 days ago...he's tagged the floor every day for the last 3 days...don't know if he's getting so old he's loosing control (almost 15)...stressed because he's sensing MIL decline (probably giving him too much credit...or stressed because of all the strangers from Hospice coming and going...he needs to realize that at this stage of the game we could probably put a small stuffed dog in his bed and MIL would never know the difference...VVEEERRRYYY tempting...just sayin.

V Veronica91 Mar 2014 · Answer 6 · 2014-03-26T13:11:22.000-0400

See how he does you'll soon know if it is time for a one way trip to the vet. Is he doing anything else like staying close to MIL? give him credit she's had him a long time and he could realize what is happening

A anonymous179890 Mar 2014 · Answer 7 · 2014-03-26T13:13:45.000-0400

Red try putting pee pads down for the dog. I inherited my mother's little dog, Sue, 4, and she was far from house clean as my mother only took her out mid afternoon (no fenced back yard) - once she'd got dressed to the nines, full makeup & jewellery - so the dog had no choice but it went on the carpets as well. Sue's been with me 18 months now and is pretty much house clean thanks to a fenced yard and encouragement from my old black lab.

The old dog might just be becoming incontinent and unable to ask for out quickly enough so pee pads may be the answer. Good luck!

B butterflykisses Mar 2014 · Answer 8 · 2014-03-26T15:53:56.000-0400

Want: your Mom is afraid to go with them alone. There is a fear within her that perhaps they'll not bring her back home. Don't make her go - it sounds like she can still make some decisions for herself. Could you take her to visit some of the folks she has not seen for a while? I'm so sorry she is tearful about this situation, because then you feel guilty - please don't. She obviously feels very safe with you and one thing I know about changes - people with dementia/Alz. or memory loss have a fear of not getting home again and they want to be with people they really trust and know. You've done the right thing and again, your Mom has spoken volumes in the few things she has said about her sisters. Protect her and yourself, please. Hugs and blessings.

R reddoglives Mar 2014 · Answer 9 · 2014-03-26T16:53:27.000-0400

Ashlynne it took me 3 years to get him to hold it to go outside...MIL did same thing your mom did only this dog was 12 years old when we moved them in here...he's blind so only used the pee pads she had when he accidentally hit one. Thank goodness for tile throughout...we did have tile in the master bedroom but gave that to MIL and moved us out into the garage so she would have room for all her stuff...carpet has since been ripped out of there too because between her accidents and the dogs it was ruined. She now has waxed concrete...Veronica in my opinion he was ready for a one way trip to the vet about 3 years ago...At first I had to mop 4-5 times a day...he had never been housebroken and was blind as a bat so would pee then step in it and track it all over the place...it took about a year to get him to be ok during the day but would wet in the middle of the night worked on that and for the last 2-3 months he's done fine through the night too...just the last 3 days he's been back to old BAD habits...MIL loves that dog more than anything else on the planet...that is the only thing that has saved him so far...

W wantingtime Mar 2014 · Answer 10 · 2014-03-26T17:48:59.000-0400

butterfly, that's why I am sooo against putting her in assisted living or a nursing home...yes, she gets lonely, yes, she gets bored and I am sure it's bad for her mind but she thinks of it as home....it's the only place she wants to be.

A couple of weekends ago, we went to see an aunt that lives near us, she got very panicky about how far it was.

It may not be perfect but for right now, it's working for her and for me

S StandingAlone Mar 2014 · Answer 11 · 2014-03-26T20:12:37.000-0400

Chrissy, I'm really sorry about your mom. I hope she feels better soon and is in less pain. It is hard to watch someone suffer and can't do anything to help... I hope tomorrow is a much better day...

If you guys need a good laugh, get on YouTube and look up 'Lip sync battle with Joseph Gordon Levitt, Stephen Merchant and Jimmy Fallon' and also, 'Lip sync battle with Paul Rudd and Jimmy Fallon'. It's hilarious! I laughed tears. :)

Have a good night, ya'll!

A AliBoBali Mar 2014 · Answer 12 · 2014-03-27T00:55:43.000-0400

Wantingtime, I really sympathized with your situation recently, where your absentee aunt came in and "bought" your mom's embroidery… I think everyone on here sympathizes.

One of the ugliest incidences surrounding my grandmother's wake occurred when my sis-in-law decided she was taking some of my grandmother's family pictures then and there, that day, the day of the wake… held at my grandmother's house… where I was/am living, slaving, cleaning, not sleeping, up all night - literally - before day of funeral and wake so I can prepare the food, set out the pictures as tributes and in memory of my grandmother so family can view… and my sil declares she is taking some. I firmly and without anger, took the pictures out of her hand, returned them to their box, and said "Not today, you're not, I'm happy to make copies for you." She threw a tantrum, grabbed me by my face and yelled at me. I didn't return fire at all, I was just confused why my normally sane and decent sil was acting like this. Later, my bro sees she is upset in bathroom and asks her why… she says, I quote, "Oh, your sister!" She KNOWS me and bro have history of quarreling, so she KNOWS he will now "handle me" for her. He cornered me in a side room, totally blindsides me, physically restraining me by grabbing my arms and hissing at me an inch from my face, and verbally just berating me in the most vicious voice about what a piece of poop I am. I tried to get out of the room by just pushing him aside. He wouldn't let me. At that point, my emotions are so on edge, I'm crying and its escalating into hysterics because he won't let me go, and it becomes a scene-making incident in front of all my family that I now never get to forget… and its attached to the tender feelings I have about my grandmother dying. I mentioned I was up all night preparing food, etc, for wake, but I had been up for WEEKS, bottle-feeding her, giving her round the clock meds she needed… And this is what some of my family members do to me on day of funeral. Yeah. They can just be so wicked.

I suppose I didn't need to regurgitate this terrible experience on here, but I wanted you to Know, Really Know - that you didn't do a thing in the wrong. That its hard when we're already in sensitive place, caring for our loved one, and some "family" person comes in and acts like an enemy… its so hard to know how to handle it. Whether or not your aunt ever wakes up and realizes what a wicked witch she was to do that is not your concern. To this day, my brother's "version" of what happened that day was that I assaulted him… I told him a kidnap victim can't be accused of assault… sigh…

Love to you, and to all of you… Getting old may not be for sissies, but Caregiving sure isn't, either. (((((hugs)))))

B butterflykisses Mar 2014 · Answer 13 · 2014-03-27T02:00:53.000-0400

Allison: Amen! Nothing surprises me anymore about family dynamics. It seems most, not everyone, on this site has a story to tell that is not pretty. When we're caring for a deteriorating loved one, our emotions become close to the surface and we are so vulnerable. Just remember, your SIL is sick and that you cannot change. Also remember, your brother has to live with her, so it would be necessary for him to take her side or he would be also the victim of her wrath. So sad, but true. Life is so short. You did the right thing and don't think another thing about it. Did she ever think there might be others who would like copies of those pictures? I bet not. Make the copies, send them off, don't ask for reimbursement and feel good about doing that. You've been a blessing to your Grandmother and for that you don't have to justify anything to anyone.
Hugs & xxx's. This too shall pass.

B bookluvr Mar 2014 · Answer 14 · 2014-03-27T05:44:03.000-0400

Hi Maryhope, how are you today? Still have your shoulder pain? Is it something that can be treated with medication? Or hot/cold pack? Salonpas? I know what it’s like to caregive when you’re in such severe pain but still must do it…because who else will do it? Any possibility of finding day help with one of those elderly programs? Your father might qualify. Even if it’s only once or twice a week.

Veronica, when they had the tsunami in Japan, I watched the videos of it. I tell you this much, if that tsunami had hit here, most of our island would be covered by the water. When this tsunami had hit Japan, our island went on a tsunami warning. Our office (me and my 2 bosses) is located at the beach road where all the tourist hotels are. We only found out about the tsunami warning like 530pm. When I got out, our 3 story building with very high end boutiques, - the parking lot was practically empty! I was sooo pissed off that the building management (same 3rd floor as us) did NOT warn All their rentees. As I drove down the beach road, I saw NO LOCAL people. All I saw was the Japanese tourists who did NOT know that their island was hit by a tsunami. NONE of the tourist buses stopped at the pick-up sites – which the tourists were waiting. I think I rolled down my window and tried to warn some tourists but they didn’t understand English. I was so upset that none of the hotels sent their people out to warn the tourists.

Wantingtime, it sounds like your mom does see the reality of why people come for visits. It could be that she no longer knows how to say NO. My father is like that. If you came to the house, and said you need this or that, he feels obligated to give you what he can – even if it doesn’t belong to him (like my sister’s generator!) With your mom’s comments, she’s telling you in a round about way what’s going on. I’m so glad that you did what you did…. Can you believe that my car Did have problem with the engine mounts? I had that replaced. I asked for the parts, and they gave it to me, showing me where it was broken. That was years ago. My car is only 6 years old.

W wantingtime Mar 2014 · Answer 15 · 2014-03-27T06:30:53.000-0400

Oh, Alison! What a nightmare..this whole incident just came out of the blue for me. It is astounding to me that people can roll in out of nowhere and just assume they know more about the situation than we do. My other aunt told me "there's plenty of the embroidery to go around! There's boxes and boxes of it out in storage!" Now which one of us would know what is in my storage bin? Me, the person that put it there or her? People have picked over and she's given so much away there is little left....and she isn't making more.

The real thing that makes me so upset is how when it's in their favor she is in her'right' mind but in the next breathe they tell me to put her in nursing home 'for both your sakes', like I am not taking care of her.

S StandingAlone Mar 2014 · Answer 16 · 2014-03-27T08:06:00.000-0400

Wanting, you know the truth of it, the fact that you're a good care giver and that's all that really matters. I wouldn't put too much stock into a strangers attitude when they're really clueless about your life don't live it and don't know what's going on.

I still have several really lovely blankets my mom made. A few sweaters she made. Baby clothes she made for me when I was a baby. I will always highly value these hand made treasures, but it's painful to look at them too, right now. I have quite a few of my mom's things, but it's the handmade items that are the most painful to look at right now. I hope it won't always be that way.

I found a picture of my mom yesterday, one I knew would be a favorite the second I snapped it. It's my mom in her favorite chair, sitting there relaxed, holding her little dog, Reba on her lap...The sun is coming in the window and it's a very peaceful picture. I was thrilled I found it again, and sad as h***, too.

Have an awesome day everyone.. I hope it's warmer where you're at!

V Veronica91 Mar 2014 · Answer 17 · 2014-03-27T09:46:29.000-0400

Red being blind is not an excuse - dogs have incredible noses. Our old German Shepherd went blind from diabetes and she never ever had an accident. My daughter adopted a Lab that was blind also from cateracts due to diabetes. she did have one cateract removed so he could see again and he was clean before and after. She said the day after the surgery she found him with his nose pressed up to the window watching everything.
Have you considered putting MILs miserable pooch in a crate at night? maybe someone would lend you one preferably a nice big one so he is comfortable (not that he deserves it) Would he bark all night if he was confined? Could you put him in doggy diapers? Sorry Red I am just full of ideas for saving this miserable dogs life!!!!!!!!!!!!!!!!!!!! Another thought does he have diabetes? or kidney failure? Does he drink an excessive amount? I"ll stop now before you climb through my computer and hit me.

A anonymous179890 Mar 2014 · Answer 18 · 2014-03-27T10:24:23.000-0400

Red & Veronica, although my mother's little dog can see perfectly well (she's only 4 now) in trying to keep her going in one spot in the beginning I'd put 2 pee pads side by side. When she went on them I'd dry them out and put them down again so the pee smell for her was really strong though I couldn't smell it. Sounds weird but if you could get pee from another dog and put it on the pads to start with he'd be more inclined to "mark" that spot. Though I leave a pad down at night in case of emergency, Sue is now 100% clean ... Yay! Good luck!

V vlangel Mar 2014 · Answer 19 · 2014-03-27T10:29:46.000-0400

Hi, I am brand new to a caregiver forum but not brand new to care giving. My husband's mom moved in with us in '07 and has been bedridden since '11. She suffers with congestive heart failure and mini strokes. Her condition day to day varies greatly. Yesterday she wouldn't take her pills or even open her mouth so I could feed her. This morning she did both, drank her juice and is feeding herself a strawberry donuts.😊Its a rollercoaster ride for sure. We have hospice support but because she is not showing continual signs of decline she may be discharched which I would very much miss. I love our nurse and aides and I value their input and suggestions. Also the medication to help mom breathe is invaluable when its necessary and I would not have access to that anymore for her which is scary. My husband now helps in all aspects of mom's care, (we protected her dignity as long as we could but after a year and a half of being the only caregiver I couldn't keep going without help). We make an excellent team which is good because his siblings both live too far away to help. Anyway, that's my story. Thanks for listening.

V Veronica91 Mar 2014 · Answer 20 · 2014-03-27T10:52:05.000-0400

Welcome Viangel. You and your husband sound like the perfect team of caregivers. Hope you are able to get out together sometimes for a little respite. Have you used the respite care that hospice offers.
Why do you think you would not have acess to MILs breathing treatments if hospice leaves. It is something Medicare or Medicaid should cover. The actual machine probably will be left because they can not usually use it for another patient. You own Dr can prescribe the medications and any other equipment currently supplied by hospice. Talk to your nurse about this she or the social worker should be able to help you with a transition. keep up the good work and return often. blessings.

V vlangel Mar 2014 · Answer 21 · 2014-03-27T11:12:18.000-0400

Thanks Veronica91. Yes Dave and I hire a Home Helper on Sundays for 6 hours so we can go to church and then maybe go out to eat with friends or take our pooch for a walk. We started that a year ago. Its a scary unknown how we will manage without hospice as they have been with us since Mom became bedridden. I know they will help us transition if it happens though. What we have now is working so I'm hoping that we don't have to make a major change like that but I feel much more equipped now than when Mom first entered hospice. I was so lost and overwhelmed and hospice was awesome at helping me learn to care for a person confined to bed.

L LadeeC Mar 2014 · Answer 22 · 2014-03-27T15:11:03.000-0400

Hi, Vlangel .. welcome to AC and the You thread! Once hospice discharges your mom, talk with her primary care physician. She should be eligible under medicare guidelines for continued "skilled care" under the 'upgraded guidelines' ( http://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNMattersArticles/Downloads/MM8458.pdf ). It's been my experience with doctors and Home Health care providers that most are NOT familiar with these guidelines, so be sure to pass that document along.

Blessings and best wishes,
LadeeC (not to be confused with the other LadeeM ::grins::)

L ladee1 Mar 2014 · Answer 23 · 2014-03-27T17:02:20.000-0400

I am getting so f**king tired of being bumped off of here !!!!!

Ok, deep breath.... one more for good measure..... mmmm, a little better...

With that little rant over with, welcome.... to our new folks.... and yes, there are two Ladee's.... separate people, but with many of the same answers... I know, we find it weird too.... lol

She has to take deep breaths behind medical professionals and I have to take deep breaths behind just about everything !!!! LOL.... but we BOTH need a vacation.... like a REAL vacation.... not just a day or two off... like everyone on here.....

One of these days, we are going to have a huge 'meet up'... we'll all recognize each other at the airport... we'll be the ones that look older than our age, will have dark circles under our eyes... and a 'twitch'... somewhere... and eye, a shoulder, something.... and it will take us a little time to smile..... but wouldn't that be the greatest thing.... for me to get to meet ya'll would be out of this world a good thing......

Ok, last night to work..... then sleep.....love to you all..... and chocolate... we must consume chocolate...

V Veronica91 Mar 2014 · Answer 24 · 2014-03-27T17:07:14.000-0400

Saw this on a coffee cup. "I should give up chocolate but I am not a quitter"

L ladee1 Mar 2014 · Answer 25 · 2014-03-27T17:14:28.000-0400

Oh Veronica... I have to have that coffee cup..... !!!!!! Need to find me one.....

R reddoglives Mar 2014 · Answer 26 · 2014-03-27T17:18:35.000-0400

LOL...if MIL suspected for an instant that we put her precious Red in a crate she would kill us both then have a stroke to boot...then come back to haunt us...she can barely see the pills on the table in front of her but can see that mutt if he's outside on the patio...I think she could get out of that wheelchair and hurdle the kitchen table to get to the sliding door to let him in...my husband and I both know our order or importance around here and trust me what ever that dog wants comes way before either of us...we continue to put up with him and it keeps her as happy as she is capable of being at this stage of her life. My husband is the one who gives him his insulin injections and will clean up a puddle if he finds it first (typical man has tunnel vision) We are making it work for now...Not sure if Hospice is a big help or not...may wear myself out trying to make sure everything is spic and span when they drop in...

B butterflykisses Mar 2014 · Answer 27 · 2014-03-27T17:29:04.000-0400

Red: you and your husband are truly saints to put up with the dog, but being an animal lover myself, I understand. It is amazing that someone who has a sight problem can see "some things" and yet other things go by the wayside. Don't worry about Hospice and having everything spic and span - believe me, they have seen it all. They came to my house and did not turn around a leave...they are wonderful and I'm so glad you have them helping you now. Let them do it and you all enjoy this special time together with MIL - you won't be sorry. It's good you and your husband know the pecking order where the dog is concerned - I laughed out loud with your comments. You keep your sense of humor, girl. That and sounding off on this website will get you through the next challenges. Blessings.

S StandingAlone Mar 2014 · Answer 28 · 2014-03-27T17:29:44.000-0400

Well, this made my day. lol

I ordered a seating set for my sunroom. I wait and the delivery day comes and goes. Two weeks later, still nothing. Ok... So, I finally get hold of someone at Fedex and they didn't receive the order, didn't know anything about it. Great. Finally get hold of someone at Walmart online. According to the girl on the phone, the ticket for the order was printed, but the order was never gotten together and sent off. So, she said she'd send a new one out. That was great and I got it a couple days ago. I still haven't put it together yet. Anyway, someone knocks on the door just a few minutes ago and it's the fedex guy. I wasn't expecting anything. But here he comes...with yet ANOTHER set of furniture for the sunroom! Now I have two identical sets.

What do I do? Do I call them and tell them about the mix up?

N norestforweary Mar 2014 · Answer 29 · 2014-03-27T17:38:28.000-0400

Yes.... have to let them know you received two....I always feel if you don't let them know it will come back two fold on you! Enjoy your new sunroom furniture.

P Patty342 Mar 2014 · Answer 30 · 2014-03-27T17:59:08.000-0400

How am I today?
I am tired.
I love my Dad.
I never want him to pass, I will be so totally lost when it happens.
Right this minute all I can say is that I feel like I am drowning.

The Caregiver... How are YOU doing today?

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