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.
Vic – I am sorry that your dad is so disabled and the therapy is hard on him – is there some sort of harness that could keep him in his chair? So much u really can do little about and that in itself is hard – glad you have hubby there for feedback – I think it would be easier for him if he was not aware – you are a tender lady, vic –don’t be down on urself
Spaz – hope the meals prob is solved, glad you are working through a book to help YOU. I wonder if when the stress lessens it will help your headaches – does exercise do any good – some headaches start from tension in the neck muscles
Ladee – hi back to seeme any time you are talking with her - sorry the PA visits got messed up -was there anything new about sonnie? Mess mess what’s that??? Yes it will not go anywhere –understand why u hate Alz
Cmag –did your mu get her next appointment? How frustrating!!!! Prayers for reduction of the triggers… I know how they can get you – ladee said it right – about your success
Seeme - steaks are great –what a pain when a frig dies – hate it – puppies - love puppies – know this is a hard time for you – lots of pain – ((((((((((((((hugs))))))))))))))
Jam - glad u get to do nothing sometimes –glad Target did supper –sounds like he is getting a little more involved – see u r looking at placement – let us know how it goes –Wal-Mart – oh my! What a mixed bag
54 –good to hear from u but sorry your hubby is worse – praying for him to go home soon
Stormy – I know you are on a bed of nails right now waiting for the appointment tomorrow – breathe deep. Try to get some rest tonight. The thyroid issue could cause some skin issues too – you are going through some very tough stuff right now and doing a great job – remember ur mum would be proud of you girls
Shawna - glad mum has been having some good days and that u got some new sneakers – hope the aches and pains are better
Sdpeg – her memory certainly may come back with the adjusted thyroid meds – have to wait and see – If you were a student and I was your instructor I would say reducing your course load is a good thing. Have had many students with very heavy personal leads and they benefitted from going part time. I hate the w/they thing with siblings – happens with me too -hurtful
Carol – you have your situation to deal with which is hard on you - no need to compare -no one is walking in your moccasins – having your mum tell you she needed someone to care for her after you have been doing it for 8 years is very hurtful – yes she is not in her right mind, but it still hurts – maybe it is time for change. Yes they can heal –my mother had a hip op at 84 and another this year at 99 and is healing. Keep on venting – maybe your silver lining will come – one way we do it is antidepressants –are you on any? They do help.
mis – locked out - aaaargh!!! Hope u get that eval done soon. Fall is pretty but we know what is coming
ros – my mil is a good lady and I do not mind help her out – to give my ex credit he called me the other day and he has checked on his mum – he will connect again soon as Gordie’s b’day is the 10th and we always support one another then
burned – so sorry that your hubby has so many health problems – sorry about your children too – good for u for taking some courses – need to do something for urself
heart – how ya doing?
Everyone else – thinking of you and check in when you can
Here G arrived home in the small hours and took off this morning after a good breakfast to clean out his stuff from his contract job – no more work there till Nov and he starts the new job in 2 weeks. Can we get away please? I went out for a walk then fell asleep on the sofa –dd and kids came over for a visit. Have heard no more about mother so I gather she is OK. Mil is doing alright and they think she will be able to go back to her place soon. G said my colour is better –finally I am starting to something close to well. It has been a long time –caregivers be sure to look after you or it will get you down further than you think or want
Made pot roast for supper yesterday so just have to heat it up – but no sign of my man yet so I may go ahead without him -2 hrs. may mean 2 days with him. Got a call from his farmer friend to tell G it was cloudy and not a good time to hay as the moon will be full soon – is this a code message???? Better go - the cat is nibbling my fingers to let me know he wants his supper.
Love, hugs and prayers ♥♥♥
jo
Checking in after my Wal-Mart trip, then I think I will take a nap.
Carol.....yes, 96 yr old's recover from fractures all the time. It's usually something else that causes the complications. How many times have we heard that an elderly person fell and suffered a hip fracture and then died? Usually it's because pneumonia sets in. Please don't feel like you are standing on the outside looking in at a bunch of care givers running through a field of daisies. My response to that is..........hand me a match, someone else can bring the hotdogs, marshmallows, and chocolate bars....don't forget the graham crackers......... and we'll have a party! Some days are better than others, we all know how tough this job is and having some help makes it so much easier to get through those bad days. I tried taking care of the col myself for a year and a half, but unfortunately I couldn't grow a few more arms and legs or eyes for that matter. I swear she was more active and could get into more things than a two-year old. Just because we're care givers doesn't mean we don't have bad days, are grouchy or don't feel well. When I have a cranky day I don't post here much, sometimes not at all. But I do remind myself that the col has an illness and even though it might make me crazy at times, it isn't her fault....she has no idea that what she says and does won't make any sense to me and sometimes her actions may make me totally frustrated...I'm only human after all...but I have learned to put my fingers in my ears and go lalalalalala.....thank you ladee, you're a lifesaver! So Carol, you are not out there by yourself, you're in the same wagon train as the rest of us!
Hope you all have had a terrific day..........time to decide what the col wants for dinner.
Love and Hugz to all,
Jam
I especially like this topic because it does center around WE caregivers who sometimes get forgotten. This group NEVER forgets who we are and what we are going through.
re: break/fracture: I have nothing to contribute as I've never experienced it nor have an answer to your question.
Just wanted you to know I am thinking of you today ... hugs my friend.
Peg
I feel like everyone else here has such a better attitude than I do. Please tell how you do it? Thank for reading . I wish all the best for a BETTER day. Carol
Sdpeg...just some thoughts can you take 2 of your courses online? Agree with cmag about one major and minor.. Or can you get courses scheduled so that they are all tue Thurs classes..will grants pay at all if you are part time vs full time? Just some thoughts..
Yesterday..dad was dreading therapy .. It really takes a toll on him. We got through OT and it was eval. Thought he would be ok...but as the day progressed his body kept sliding we were outside on porch, thought it would cheer him up to get some fresh air, but every few minutes he would be almost out of his chair. We were coming back in house and he slide right out of chair onto floor. No reflex at all to stop him. I asked him like always if he could tell me what is wrong..he comes out with nothing and even if he said it was something then I would say it was nothing.. Arghhh. His tummy hurts from time to time he has a history of diverticutilisand he has had costocondritis in his side that comes goes. Most times when his tummy hurts it is gas and or from something he ate. If his foot is hurting it is gout..not much I can do about any of it. Mom was very upset watching dad last night as his leg was up and down moving and moving. There isn't anything that we can do. He has become much more limber since therapy has been coming but is it worth it!?!! I just don't know .. I just want to see him be the best he can be in this situation. He is down mentally but has a hard time trying to say his feelings or what is in his mind. Hubby says it is just a bad day and reminds me there isn't anything we can do. But am I pushing too hard? I know he wants to move better..he would love to be able to walk with walker...don't see that happening anytime soon as he can barely lift one foot.
Sometimes in my mind I wish his mind didn't know what is going on..it would be easier..for him or me? Hate hate hate to see him suffering so.. Then there is mom seeing her partner declining and her sitting there watching him and worrying and her suffering with him. I am not a gentle person per se..I am gruf and loud and strong..I pray today I can be gentler ...I am so sad but have to keep on keeping on.
Love you all...
I pray your mom gets the appt. Nothing more frustrating than a failure doc appt. Well, maybe no sleep. I, like you, feel more drained the day after than the day I don't get sleep so seeing as I didn't sleep well last night, perhaps I should zzzzz now! But there is something wonderfully addicting to this site. I am thankful for all of you. Prayers and hugs! Peg
I hope everyone has a good night.
I also hope that my mother actually sees her neurologist tomorrow at 1pm after a failed appointment Monday at 11:30am. I could use your prayers for sometimes, like tonight, mom memories which get triggered by mom and taking care of mom flare up on the inside and I end up not sleeping well the night before, being drained the next day, and feeling more drained the day after.
I was talking to sis today before she was to go to her hair appt. We were on the phone talking and we got to discussing about dads appt thursday and she said i need to call them and tell them to reschedule for next week. I said WHAT? I said no you don't. We need to know. And then i told her to go to her hair appt. We were not mad at each other. And i hope and i think she was just joking about changing the appt. She just does not want to hear it if the cancer has spread. I don't think it would be as bad if dad wasn't going to be in the room with us, but she just doesn't want to see dad hurt by the news if that is what they say. And i don't either. But we must know so if it has spread then there are decisions to be made especially concerning dads decline. Like is he going to need oxygen. And just other things. I know how she feels if we hear bad news she is thinking well, what do you say to dad now? I know i have been thinking the same thing. And i still have not come up with any answers. And tomorrow he is suppose to go see the ent dr about his neck. We told dr dolittle today that we thought he might have a yeast infection of the neck. And then i asked him could that infection get into his lungs and he said yes. Oh and the other thing is i was cleaning dads neck today and OMG there was this awful smell coming from around his trach and it smelled like vomit! I thought i was going to hurl right there on him. I was so sick to my stomach i tried to hold my breath but that didn't work. Boy was i glad when i got through cleaning his neck........ Yuck, Yuck, Yuck. I sure hope it is not like that tomorrow or stormy will have vicks vapor rub shoved UP HER NOSE!!!! Nite NIte my internet angels!!!!!!!!!!!!!! HUGS Stormyyyyyyyyyyyyyyyyyyyyyyy
Thanks for your input, sincerely appreciate it. I love school (was a preschool teacher/director/owner) so education is first and foremost in my life (always has been, always will be). Yeah, less units, less stress, better grades. I just have to figure out the money part ... well, less trips to school (an hour away), less textbooks to buy, less ink to write notes with ... hey, part time is beginning to sound good to me!!! Thanks again Stormy, appreciate you! Peg
Shawna- We have been using the sterile water to drown dads drain pads around his neck to unstick it from his neck and ulcer under there, but sometimes it just takes time to get it unstuck. We have not put any pads under his neck since i had such a time yesterday with it.
Carol- prayers for you that things will get better. And remember you are a part of this family and you have just as much right to come here and vent all you want. So let it all out girlfriend; don't hold back you will feel better. I always do! Love ya
Mis- thank you for keeping me and my family in your prayers. It's been a long week and very draining on the mind and body. Ready to get this over with. Hugs!
Ros- Thank you also for thinking of me and for the prayers. I hope things improve for you in the job area. And i am also thinking of you and your mom. Prayers for you my friend!
Jam- you need to let me know how you are able to keep up with everyone on here. I know you said you have a list. What do you do write down the names and who they are taking care of. I know we need to go to this appt thurs and i want to go so we can find out what is wrong with him. This waiting around for answers is for the birds. Thursday can't get here soon enough. Sick of the hurry up and WAIT situation.
Emjo- You were right about dad's tsh level. Thanks for the heads up. I'm sure i will be asking you more ?'s about the thyroid stuff. And anybody else that knows anything about it let me know. Love ya Emjo i hope you are doing well.
Starri- girl u have got to find a computer that works we miss u!
Seemee- It was great hearing from u! Love you.
Ladee-Marie drive u crazy today? And how is sonny today good i hope he sounds like a real sweetheart. Love all of you and thank you again for the prayers Stormyyyyyyyyyyyyy
Mom is out with Golden Boy and g/f and from day one of his visit I was shunned and then yelled at indirectly and so I declined the invitation to go out with them tonight. I do have homework to do so this is nice to not have to hear for my mom.
The Milk of mag worked. The thyroid rx will take time. She gets impatient with her memory loss which doc says is reversible.
I would like opinions. I know ultimately the decision is mine but I do value your friendship and opinions so I am going to throw this out and see what you think.
Presently I am a full time student at San Diego State University. I have waited years and years to attend. When my Dad died last year (Sept, 2010) I chose to stay a student and did very well. I am pursuing two Bachelors or maybe one Bachelors and a minor and then taking that minor and going for Masters. With the courses I need it appears that I could graduate Dec 2012 (40 years after I graduated from high school). I am flopping back and forth with the idea of next semester (Jan 2012) of being a part time student (maybe 2 courses). This affects my grant and student loans. I live off of these two resources as I am unemployed. I am caring for my mom as I have done since last year. She needs more assistance with remembering to eat and socializing. I mentioned to her that I would lighten my load to be home with her but she scoffed at that idea saying she did not want me to change my plans for my education. I really need the loan money to live off of and if I change to part time that means less money. I spoke with someone in social work and she said to seriously consider perhaps someone else coming in while I am in school or day care nearby the school I attend. Both of those my mom isn't crazy about. My heart says to lighten my load not only for my mom but for me as well. I do however hear my mom pleading with me not to change my plans. Please share with me what your thoughts are on this. I would really like to have some other people's thoughts who have or have not altered their lives to care for another. I have known others that have quit jobs, retired, moved in with parents (I like with my mom in her house as I did when my dad was still here), etc. and just want to hear your experiences.
Thanks, I value your opinion and welcome other ideas that i may not have thought of. I appreciate you, SDPeg
For the new ladies: I have an Alzheimer mother who has been living with me for the past 2 years and a half. She had declined a lot when she lived by herself, but I hadn't realized how much she had declined, because I just went to see her 2 or 3 times a week after work, so when she came to live with me (after a surgery, which, as far as I know, it's a very bad stressor for people in these conditions) I didn't know what to do. She hasn't slept FOR A WHOLE WEEK the first week she was here... So I started to see doctors and they told me that she had to take Seroquel. It took months to elaborate the right dosage and the moments where to give her the Seroquel, but we have found a good "schedule" and now she sleeps well at night, so I can work or sleep without worry, and during the day she is awake but she is not crazy.... This is a very very bad disease and you have to search constantly the best ways to fight it... Or, better, to contain it!
My mother doesn't remember her parents are dead and she keeps saying that she doesn't want to live with me, but she wants to go back to her parents. She is not at all grateful to me for what I do for her. It is always a fight to convince her to wash herself and if you don't pay attention she spread her "outputs" everywhere... I know she prefers my brother to me, because he comes once every month and when he comes he is very kind to her and spoils her...
This is a résumé of the situation. So I understand all of you: Faye, Heart2Heart, 54J, Carol, Peg of San Diego, Jam, Ladee... We really are in the same boat, with different stages of the disease. It's exhausting but in a way or another you survive. I have helpers during the week, while in the weekends I am alone with my mother. But even during the weekends I manage to have 2 or 3 hours for myself. I think this is the reason why I haven't lost my mind at all. And of course the experiences and the advice of the other ladies on this site have helped me a lot.
Jo: I hope your MIL doesn't become a burden for you! But it seems to me you don't mind to take care of her.
Seeme: I am so happy you are going to have 2 new dogs! I couldn't live without my babies in this situation.
Stormy: l cross my fingers with you for the next visit...
Good night everybody!
Carol its always good to come here. The ladies and the cmag are awesome. I know I come here alot recently. My husband's grandma has dementia and I got so frustrated at times. I'm do most of caregiving. We're too thinking of placing her somewhere, getting a an evaluation is first on the list.
Well my husband has been in Virginia since yesterday and grandma is behaving herself except for tonight she locked me out of the house while I was taking Peanut out. I forgot to leave the garage door open so I could get back in. My aunt has been coming over in the mornings and afternoon for her breakfast, meds and lunch. Grandma likes my aunt so that helps out alot and then grandma's worker will be here on Friday. All is good so far.
The colors here are changing. It's so pretty out and we're having our indian summer this week. I sure will miss this nice weather.
Hugs to everyone and sending a prayer for everyone here.
Hope it's been a great day for all of you............passing along that we haven't heard from starri as she doesn't have Internet right now. Hope that is alleviated soon.....missing that girl!!!!
Love and Hugz to all,
Jam
Today was a VERY good day with mom. Today was bill paying day so we got up about 9 .. but it was raining so told mom unless it stops we aren't going anywhere .. nope nope. So about 1 the rain stopped sister called to say she was coming over to pay for her plastic halloween mugs which was good. Got mom ready for the day got her outside it was a tad chilly but nice got her in her nice warm coat sis came paid me and off mom and I went. Walked to the one store got my cold meds BOY i feel better. Then we had lunch at subway mom had chicken teryaki and ate the whole thing no mess no fuss and had a soda. We then headed to mail out a package to oz that had to be replaced for two mugs that got broken in shipment. Then called a cab and headed to walmart to pay bills and do a bit of shopping. Mom got herself some more evergreen cedar candles that came in a set, got her pads and other things we needed. It was getting late so called E who said she was home already so I told her to forget it and walked home cause i wasn't paying 8 bucks for a cab to get home. So got home around 7 then niece called to say she needed to go to the store ... off we went again mom got settled in the house and I went and got somethings we forgot got home got her settled in jammies and relaxed for the night. She made me cry tonight though it was a good cry though ... as i was getting her ready for bed she said you know ... if it weren't for you I wouldn't have anyone to take care of me I love you ya know that. I told her I love her too. We also when we went to Walmart my sole fell off on my sneaker i mean as in literally fell in to tatters. Mom looked at me and pointed towards the sneaker section said LETS go there.. I took her over .. she was very firm and told me to pick a pair of sneakers .. i said nope .. she said yes ... lol finaly she had the sales assistant come over sit me down and find shoes in my size then told her to take her card and ring it up so that I couldn't say no lol... so I have a nice pair of low priced sneakers I talked her out of the 30 dollar ones and got the nice 13 dollar ones . In other news E's boyfriend is firmly out of the picture .. so not sure if I have to watch the kids Thursdays or not.
54 I am so sorry to hear about your husband its sad to see what happens to our loved ones. I guess I should be thankful that Daddy passed when he did I don't think I could handle seeing him decline like mom. He was vital right up to the week before he passed away. An abcessed tooth he left unchecked and infected got into his blood stream that and he was a very bad smoker.
Jam Sorry to hear about col declining it must be very hard to see her like that and not driving you crazy like usual. My heart love and prayers are with ya ...
On a side note ... can I slap the post office in the head. I told them I needed large priority mail boxes .. what do they send me the military ones which i CAN"T USE so I can't ship out ladee's box yet ... oy vey..
Dad did ok today, but there was several times today when he had some blood tinged mucus coming out of his trach and then a small blood clot came out of there. Then he spit in a paper towel and it was light pink and he had not eaten anything red or pink. All day long I was tripping out when he would cough because i was scared that he was going to have more blood coming out of somewhere and i can only imagine what was going through his brain. I hate to say this but i just feel that this cancer has spread to his lungs and maybe his bones. Today he moved his leg and it just looked like it hurt him. And then his shoulders hurt sometimes. Today when he went to the bathroom he was almost limping. He still has the swollen lymph nodes under his neck and under his arms. So that has been over a month with s.l.n.'s. And i don't think congestive heart failure causes swollen lymph nodes because that is what my mom died of and i never saw those on her. And the poor thing that neck of his is so red it looks like he has been through radiation of the neck again and he has not. Sis called the ENT dr today and told him about his neck being so red and tender and that he has a ulcer under the trach plate and they were suppose to call her back and tell her when to bring dad in but they didn't but the receptionist did tell sis that she told the dr and that he was very backed up today so maybe tomorrow he can see dad. Even dads collarbone looked swollen to me where it is red. I'm just scared that infection has gone to his bones or something like that. And this morning when i started cleaning his neck the pad that was under his trach plate was stuck to the ulcer and i had a time trying to get it unstuck and when i did it started bleeding. I told sis we cant put any more pads under there cause it is not helping its only making it worse. Well i guess we will see what all happens tomorrow. Still waiting on thursday. Scared something is going to come up and we won't be able to make the appt. that is how our luck goes these days. Love and hugs Stormyyyyyyyyyyyyyyyyyy