Hey there, Moms Buddy...

Inquiring minds want to know... ...did your mom get released to enjoy Thanksgiving at home? Sure hope so! IV antibiotics are one thing but your loving sunny disposition can not be underestimated.

Wishing you and your mother a joyous holiday...
Joan Marie

Moms Buddy, please keep us informed about mom.I have been to the hospital so many times , but never in the front entrance, always the emergency room.It was nice to do just that this time around.I use to get lost there in the beginning.But I am getting better, thanks to all the signs that guide me.One time I ended up in the basement.,. BUT FOUND MY WAY BACK.

I am rushing through - doc put mom back in the hospital for more IV antibiotic - mom was not a happy camper about it and neither was I, but that's another rave - just wanted to say how wonderful I think you all are, and how downhome real this thread is! I gotta come back and read this thread carefully, but on first glance, I just found myself smiling and wanting to give everyone a HUG! No one should ever let caregiving destroy them - that would be counterproductive. It's a tough row to hoe some days, but we CHOOSE it for our own reasons. Despite the hassles, I am PROUD to be doing this and grateful that I am able to give something to mom when she needs it the most.

Gotta jet - I just hadda dash in and ask y'all to LOOK AROUND at yourselves - you are all such fantastic people! I'd be proud to stand shoulder-to-shoulder with any and all of you!!

Ladies, congatulations.You have allowed your selves to open up up to your feelings and free to share.These feelings are about us and nothing about the love we have for the afflicted .We want to guarentee them quality of life , even though we are not able to do all that is required.We never want to sacrifice them and that is the difference.We want the best care for them and want to be able to have a quality of life for the time we have left.I have excema.I was tested and the doctor says it is caused by stress and nothing else.My mother had it as she was under the stress of the disease.

May, Skydancer, Professor, Gabe, Gypsy, MaryAnne, Eleanor, Edyth Ann etc etc...all caregivers who give to this diease on a daily basis. Our loved one is not only robbed of treasured memories and physical capabilites we are direct victims of increased anxiety guilt stress - our hours are consumed with caregiving and we lose out on our emotional and physical needs - all as we say the long long goodbye. We are in a dull sense of mourning a continuous trauma. Never knowing where else this disease will bring us or our loved one. Does anyone ever feel that there is success? I guess we might feel a sense of achievement in our caregiving when our loved one passes on...then again most of us probably would look back and say woulda coulda shoulda or did we do enough? There just are not any answers. We deal with the care and then we deal with the family dynamics - those who deservedly should make the statement woulda coulda shoulda for the loved one - our family members who do not help, who deny the disease and I will boldly say abandon their loved one. These are the realities of what we deal with. I feel more connected with you "strangers" who walk the walk 24/7 than I do with "loved ones". I appreciate your trials and tribulations and that you share them with the "family" of caregivers here - I feel / know that I can be myself and get support here...criticism or an eye of scrutiny is what I get from "loved ones". Please continue the walk in faith that the good Lord is there with you. My prayer of serenity courage and wisdom is with all of you. Peace and Grace.

Oh, May you have just described the way I feel
every day also. And then I feel quilty for feeling that way and yet I am sure that at some time every caregiver must feel like that. It is the knowing that as soon as I get out of bed it will start all over again and just continue on through the day. It is so hard to stay cheerful and patient and calm when I am trying to explain what I need him to do and it just doesn't work, he just cannot understand. Tonight again I could not make him understand how to try to urinate before he went to bed so now I will need to stay up and keep waking him up every hour to try until he will at least go once before I can go to bed, which may take until 2:00 as it did last night. And still he will be wet in the morning. Tomorrow I have to be up at 6:00 so this will probably be a 4 hour night again. As you do I pray many times each day, asking God to help me make the right choice but either he is not talking or I am missing his answer. I must keep trusting that somehow he will show me the way.
It is so unfair that this disease should have the power to destroy the lives of so many , to take away the knowlege and the memories that are most precious as we age. The memories that are who and what we are and without them we become nothing. Our LO becomes separated from us by an ever widening gap that we cannot cross. I was able to handle it better until the lack of sleep became part of the picture. I fear that the stress now will create health problems for me ( I know that I have been eating more, which I do sometimes just to keep me awake). I know that stress can make my psoriasis worse and I fear that it could change the type II diabeties into Type I. That would not help me to take care of Marv. I will do him no good if I get sick and I do not want to start resenting him because I know it is not his fault.
I sent his daughter an e-mail on Sunday trying to explain what is happening and how I am feeling and asking her opinion and what she would want if something happened to me. So far she has not answered... I am going to try to get hold of someone at the VA and see whether they pay anything on a NH or on a VA NH. Then I will try to get all the information I can on the homes in the area and compare and visit to see what they look like. I did get one good piece of news today ( I think), the results of the last tests show what the Dr is calling a "mild pancreatitis". He says it is not from spread of the prostate cancer and they just want me to put Marv on a low fat diet. I am not sure just what his definition of "mild" means but the nurse did not sound worried when she called. So we will see. Well, got to get Marv up to try to urinate again, so will say good night and God Bless.

Grammy, if you feel you are long wided I have no idea what I am.You and others add so much as you give the human side to what life as a caregiver is.There are good times and we relish them , also bad times and we show others that this feelings are normal and do not take away who we are as humans. Skydancer, that hit with a wet noodle was not to bad.I , too, take meds for my stomach.I have a problem with diverticulitus and with out it I would have to put my bed in the little boys room.The problem is , the medicine relaxes my stomach and I eat too much of the things I was unable to eat.The pants are getting tighter with each day. Life presents us with so many situations to deal with .SO MANY TIMES WE HAVE THE ANSWERS FOR OTHERS, AND IT SEEMS SO SIMPLE. WHEN WE ARE PERSONALLY INVOLVED THAT CHANGES.We know we deserve a life , but we also do not want to have a loved one tossed aside like they did not matter.I know what an oreo cookie fells like, as this time. I wake up each morning wishing I could start the morning doing for me and no other.To sit and enjoy that first cup of coffee.To have plans for the day that bring me happiness.I wonder if I will be able to do all that is expected of me.If it were not for the aides I get for both , I would have thrown in the towel.We are aloud to consider our selves in this process.I admire the person who makes a decision to do what is necessary to help the loved one and them self.I haaate being in the position of deciding another s fate.Each day I ask for the strength to make the right choice.Maybe it would be easier if another made the choice for me, I really do not know.The experience I had with the care mother received is a deciding factor , at this time.I hate these diseases that bring us to this fork in the road.It robes these lovely people of all the character they prided them selves.They wanted to get up in the morning and enjoy life as they once knew .It makes them behave in away they never would of thought of if they were not afflicted.Children not being able to have the relationship of their grand parents that is so meaningful.Husbands and wives seeing on or the others as a stranger.These are the things that make it so difficult to do what we know must be done.I found my self speaking with the aide this morning about our state run facilty.I never thought I could bring my self to think along those lines.I am pleased to know it is excellent , as I had been told many times.It kills my youngest son to see his father in a bad mental state.He said he would rather have him be the other dad who would give him heck when he felt the need.My heart breaks when I learn of the millions of people who are facing the day to day pain of seeing a loved one fight any illness.If I had not experienced it I probably would not feel so stongly .They say that life is a B and then you die.I wish that were not true.I hope you will find your answers and be confident with your choice.

I have written at least 8 long winded reponses to thank everyone for sharing and also vent and share myself...insanity os doing the same thing over and over...I believe I have Alzheimers psychois....

Ruby Tuesday, aka Grammy aka Lori

Thank you all for the loving and supportive messages!! I guess I forgot in the time that I have been away from this forum just how much each and everyone of you support everyone who comes here. I will not forget that again and will try to come here more often. Since our support group fell apart I have been reading more on here and posting a little and I will continue to do so.
To answer your questions:
Gypsy, yes I sleep in the same room as my husband. We only have one bedroom, although I have an extra room that is the room I used when I was working from home but it would mean getting rid of a lot of things that I have no where else to put and I don't think it would help me to sleep any better. We have what is called a king size bed but is actually two individual adjustable beds on one king size headboard. Since they operate independently I at least keep my bed dry. It seems like Marv is going through different stages because two months ago he was still getting up 3 or 4 times a night, wandering around the house, not making it to the bathroom or taking the depends off on the way and wetting all the way across the floor, and now I have to wake him up to take him to the bathroom (like trying to wake up a sleeping 5 yr old) and sleeping all night except when I get him up. So I do not think he even knows he is wetting himself and evidently has no feeling of having to go. I had been going to buy one of the pads that set off an alarm when he steps on it but now I am going to wait on that since he no longer gets up on his own. I am not sure how I do it some days either because I feel like a zombie a lot of the time. I did have respite here 2 days last week (2nd time I have had someone come) but I spent that time going to check on NH in the area so I would have some idea of prices. The VA is supposed to be paying for respite but Sat I got a bill for the days they were here and if the VA is not going to pay I will have to stop that also.

May, if I give you a wet noodle spanking you will have to give me one back as I deserve it as much as you do. Let's consider we have both been "wet noodled" What you say about knowing one thing in your mind and feeling something else in your heart is an exact description of how I feel and I think the stress is why my psoriasis is getting worse and may even have something to do with my hair getting so thin. I take Prilosec every night for a hypersensitive, hyperactive esophagus and reflux disease. Without it I would probably be having stomach problems from the stress. When my first husband died I had stomach problems for nearly a year.

Maryann, I appreciate the suggestion to have someone come in but I have no where for anyone to sleep except a couch in the living room so I don't know that I can do that. I am checking on what the costs of that would be. Even if they came in during the day so that I could sleep a few hours it would help. I would like to try that and see if it would work although I have never been much for sleeping in the daytime.

Well, it is 10:30 and Marv is falling asleep in his chair so I need to get him to bed. Hope that everyone has a good night and a better day tomorrow.

Eleanor, first , let me say , you are wonderful.You are so understanding and so flexable and non judgemental.What a wonderful trait you bering to us.Mary Ann , if I could find someone that would live in for that price , I would have them yesterday.It would be so good to be able to wake up and taste , hot coffee.My husband seems to have taken a turn for the wrose mentally.He was so bad physically after the surgery.Then he began to focus on one thing and that is where he remains.He believes he manages the american legion club in our town and want to act on this.He wants me to take him there so he can prove he does manage it.Saturday he refused to allow me to put on the catherator because I would not take him to run errands for the business.THIS IS THE ONE SUBJECT THAT HAS BEEN SO PREVALANT FOR SO LONG BUT IT HAS BECOME MORE CONSISTANT.Today he had the phone book to get a repair man to check the refrigeration as he felt it was too warm.I did not handle it well , sorry to say.Just now he told me we needed glasses for the bar and I told him all was ok.He can carry on a conversation like normal and then this subject is introduced.He was telling my sound that the Legion was so busy because of veterans day and thought both my sons worked with him.His physical abilities became better .I do notice when he is going to have a bad day he has this fast chewing motion.I was glad the nurse was here to observe it and his state of mind.It changes so fast.The week was so difficult that I spent the day sleeping.Every thing caught up with me.My body tells me in so many ways that caregiving is becoming too much.I ONLY WISH MY OPTIONS WERE NOT SO LIMITED AND MY EXPERIENCES SO .i NEGATIVE.I will receive no more respite care, from the VA after the first of the year.Budget cuts , which were known before the election and never mentioned.No hospice from VA unless they are on their death bed.Thank god , I will continue to get in home health care.If not, I would not be able to do anything

Good evening:

I am worn out from reading the Posts from, Lois, Gypsy, May, Marianne & Ruby.

You are all such wonderful caring Caregivers.
While reading I think back to the days when Jim was home. You do not realize what you do in a day until you have stopped Caring for LO at home.

Jim has been in the NH for 10 mths , I still am his Caregiver but in a different way.

Lois coming to the Forum and letting it all out is a great help to you. You will read were others are having the same difficulties. It is such a difficult disese to watch are loved ones in this AD.

I never got Jim up in the night to change. The last while when he was home the Bed was rarely wet. Maybe his PJ,s and the pad.When Jim first became incontinet everything was wet took awhile but eventually a dry bed. I used Tena Diaper and super night Pad. I found that the best.

Lois do take care don,t be so hard on yourself, Live one Day at a time. Look after yourself, I was always told to Take Care of Me. My health took over and that is why I had to Place JIm. I know now it was the best thing. AS I have often said " Jim is in his World Now "The Alzheimers World." I visit Jim often and spend lots of time with Jim.

All take care and [[[[[[[BIG HUGS ]]]]]]]all around.

Eleanor

I completely understand what you all are going through. About a month ago I was having trouble where my brother was going to put my mom who I am the caregive for in a nursing home. In a way I was OK with it all as I had reached the end of my rope and not sleeping. To make a long story short we ended up finding a home health aid that comes from Sunday night and goes home Friday when I get home from work around 6:30. I had to take a second part time job to help pay but it's worth it. No more having to battle the morning food and meds not to mention changing sheets and cleaning the rug. The lady is a widow and has also lost her son to cancer. She has family but says with her grandkids and greatgradkids it's crazy. It cost $280. a week in which I chip in $100. It did take some getting use to having someone else live here as well as being the one to care for my mom but it has helped me. Perhaps you can look into having someone come in, even if it's only a few days to get some respite for yourself. I never thought I'd have to do it but now that I have I'm sorry I didn't do it earlier. I still try to take things one day at a time. Today was the constipation battle with the enema and rubber gloves with vasaline this morning and I was very happy to be able to come downstairs to my bedroom by 8 tonight. We all have to remember that it's OK to do what is best for ourselves so that we can help our love ones. Prayers are out there for all of you, my new friends.

Sky Dancer,I struggled with the same feelings with my mother and am struggling harder now with my husband.In my heart I feel one thing but in my mind and body something else comes to play.We are given more than we can handle and the choices are so little and so heart wrenching .I take Paxil each morning and it helps with the stomach problems I have developed.I think I should make all my decisions when the reality of what I am dealing with are at hand.I relate to what you are saying and being honest is a good message to others

Sky dancer, my point was not against you it was in favor of you.You do not want to look at your care giving skills through others eyes.When we see others doing things so well we have this tendency to look at our selves through their doings.I am sorry if my words came across as anything but encourageing to you.awE EACH DO WHAT WE CAN OT CANNOT DO.pLEASE , ALOOW ME TO GIVE YOU A WET NOODLE TO HIT ME WITH.

Lois-you did not put your foot in it any more than I did 2 days ago. I am still thanking you for the male pads idea-Last night I think Mike was wet 4 times-the first was before I went to bed and he did get himself out of the depends and soak a few things-no sheets. But after that I only had to replace the male pad, not even the depends got wet until the last time when I didn't put in a new male pad. I just got Mike to bed and went over again how neat the male pads were. I only had to do one small load of laundry today!!!I think we were lucky in a strange way-Mike had his stroke in the recovery room after carotid surgery-so there wasn't the getting worse like in AD or usual stroke situations. In fact he improved for the first 6 years. Sometimes when I read here the problems of others are facing I think back to that first year(he was in the hospital, rehab hosp and extended care for 10 months) In spite of my frustrations he is still WAY better than when he came home. He has lost some ground in the last year and the urine incontinance is quite new-until the last few months he didn't wear depends to bed but I always used pads on the bed to protect the sheet. I don't know how you do it on 4 or 5 hours sleep. I know a few times I have been sleep deprived and I don't function well. Do you sleep in the same room as Marv? I find often I feel Mike getting restless and can prevent wet or quickly change the depends(as long as I don't have to change the whole bed)then get back to sleep. We have had wet pillows also-I now have plastic on his except the one under his head-even that has had to be washed a couple of times.Someone here suggested bell on the bed so I could hear him if he tries to get up-they don't work for that but if he wakes up he plays with them-I have got to know if he needs something by how loudly he plays with them. If you don't sleep in the same room do you have a baby monitor(another idea from here) I only use it when Mike is in bed and I am not-right now he is not sleeping -I can hear the bells but very calmly being played with. I got a little long winded but Please keep posting-you sure have helped me. Looks like I am writing a book. Is there any way you can get a few days respite to allow you to regain your strength before you don't have choices and to allow you thinking time.Please don't feel guilty if you find you have to place Marv-you will still be his caregiver and likely would be able to bring him home on occassion.YOU are the only one who will really know if/when you have to make that decision. Hope you get a good night sleep. We are always here for you. Gypsy

Oh Dear, guess I should go back to just reading and lurking so I keep my foot out of my mouth. I did not mean to compare myself to anyone else and upset any one. I think every caregiver is great and I know that each of us does what we feel is best for us and our loved ones and that it may not be the same for everyone. I think I was just tired last night and feeling down about things. Mostly I think I am just feeling sad and also guilty because I thought I would be able to keep my husband home with me and now I am not sure that will work. It is getting so hard to make him understand things and as I said with the incontinence there seems to be no end. Yet somehow it does not feel right to be looking at nursing homes. I don't know how to explain it (and I am usually very good at explaining things) but it just feels so wrong and like I am letting him down, when I should be able to do this. Over and over I ask myself whether it is really as bad as it seems, or is it just me, and maybe it isn't that I can't do it but just that I don't want to and then I really feel guilty. I worked in a nursing home for a number of years so I know all the right things to do and how to do them but, as you all know, it is very different when it is someone you love and you are watching them slowly deteriorate and become someone you don't really know and who often does not know you. And then there are the times like just a little while ago when he went into the bathroom and when I went to check on him a few minutes later I found him tearing the inside out of his wet depends. He had pieces of it all over the floor and when I finally got him out of his shoes and pants and got him up off the stool I discovered that he had thrown most of the inside padding in the stool so I had to fish it back out of there so that it did not plug things up. Needless to say I lost it and got angry. I know I should not have because he got upset and then I had a hard time making him understand that I was not angry at him. I was just angry at what this disease is doing to us. Luckily I did have a rubber glove so I did not have to fish in the urine with my bare hand. Thank God for small favors.. I do take an antidepressant and have been for a year now. It has helped considerably up to now and I don't think I could handle a lot of things if it were not for that. It is just very hard to take this next step. Well I need to get Marv to bed even though he doesn't want to go(this is going to be one of his late nights I guess),so will wish everyone a better day tomorrow. God bless.

This message has been edited. Last edited by: skydancer,

quote:

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Originally posted by skydancer:
Ruby, I hear where you are coming from and I also get depressed somtimes but have that mostly under control. I kind of think that depression goes with the territory. I am at the stage now when I am so tired that I don't think I even feel the depression, which might be a good thing. I think that those on this forum who can care for their LO for many many years are heros and angels but I do not think I am going to be able to measure up to them and I am feeling very guilty for even thinking of placing my husband.

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There are several things to cover here. One depression is somethiong that every CG has to deal with but should never except as something they just have to live with. Not all depressions need to be treated with medication but if depression is not acknowledged then it will end up needing to be medicated for. There is no shame if you have feelings of depression but you do need to recongize them as a sign that you need a break from your situation or need more help or change of care plan.

I took care of Milly for many years. I took care of her at home to the day she passed. I was there with her when she took her final breath. I became soooo exhausted that final year to the point that I was getting ill myself. I never remember ever having that level of exhaustion before and never want to expreince it again. I wish I had someone that would have stepped in and told me how bad of a shape I was in. I was fortunate in that I recovered most that I lost, including most my hair. Many CGs are not so lucky as I.

Please do not feel that anyone needs to measure up to another. I only wish if someone wants to measure up to what I did they will get themselves to the Dr. take a bit better care of themselves than I did. that they get respite and when caring for a LO at home becomes so demanding that they are getting exhausted that they find options of placement or of additional help in the home so they can get the rest and diet that they need.

Sky Dancer, you are never to compare your self to others on this forum.You have every right to acknowledge you many have to place your loved one.The worst thing you can do is see your as being less than you are.It is difficult job.You are not whinning are induldging in self pity.You are sharing feeling that are honest.You know what you can and cannot do.We make. the choice and go from there.I am one who has done this for a very long time and would not want to do it a gain.YOU DID YOUR BEST AND THAT IS ALL YOU CAN EXPECT FROM YOUR SELF.When you get the chance , sit down and write all the things you have done in a day.You will begin to see why you are burning out.I had to call my oldest son this morning to come and try to reason with his father.He is the only one he will , half way, listen to.The changes, good and bad, are too many to mention , but he will not cooperate with me.I , like you, have begun to loose the strong fortitude to reason with him and deal with the day to day problems.I have no idea what I will do or when.I do know I will make this decision and live with it.Be kind to your self and never second guess your strengths.

Ruby

Many caregivers find themselves depressed, BUT if you are calling in sick because of depression more than once, it is past time to call your doctor and get treated with medication.

Those of us who lead overcommitted lifestyles, (working, teaching, caregiving) often feel that adding one or two more things won't be too bad...but with caregiving the reality comes home to roost. Depression often results as we can control so little of our lives. You have not failed, you are probably just exhausted, afraid, etc etc. Please please get some medication. It is not a sign of weakness as the things causing the depression are nothing you can control.

I also wonder if you aren't having somewhat unrealsistic expectations. When when a family member mentions your mom is sick and declining, this is not a reflection on you but an opening to make an assignment. Ask those relatives to visit your house for a weekend, while you leave for a hotel with your spouse.

Ruby, I hear where you are coming from and I also get depressed somtimes but have that mostly under control. I kind of think that depression goes with the territory. I am at the stage now when I am so tired that I don't think I even feel the depression, which might be a good thing. I think that those on this forum who can care for their LO for many many years are heros and angels but I do not think I am going to be able to measure up to them and I am feeling very guilty for even thinking of placing my husband. I hate the very thought of it and hate myself for not being strong enough but I have no energy anymore and I am so tired.
Hubby is also incontinent (thank God it is only urine so far) and in order to try to keep him somewhat dry in the morning I have been staying up so that I can get him up several times before I go to bed. Not good but nothing else seems to work. It just means that I only get 3 to 4 hours sleep a night and after awhile it takes a toll. Last night I could only stay awake long enough to get him up once so this morning everything was wet, and I mean everything. Even the pillow and his hair! And he just lays there in it! It is so sad I want to cry but cannot or he gets upset and cries too. The VA was supposed to send us some external catheters to try and they came today but wouldn't you know they did not send any bags so can't use them until I can get some bags. My children are after me to do something before I get sick and I know that they are right but I have limited options and limited finances. The sad part is I had to tell them I was not making Thanksgiving dinner this year. I have not got enough energy to do it and I really don't care if the holidays come or not. I am sorry I did not mean to come in here and have a pity party for I am sure there are others who have it worse than I do. Just wanted to let you know that I understand and to tell you I am thinking of you and to take care of yourself. I have not and am paying for it now. God bless everyone who takes care of a loved one through this disease....... {{{{{{{{Hugs to all}}}}}}}}}}