Rage and agitation

[marti]

Since Sam has gotten sick I've had to learn all kinds of new procedures. I just finally got the hang of the oxygen concentrator and now I'm dealing with the Inogen portable oxygen thing. I hate to say this but I fly into a rage over every new little thing I have to deal with. I guess I'm just tired... exhausted... from handling absolutely every little detail of his illness while taking care of all the day to day home/car/pet/yard stuff. You know?

I just don't know how to control my anxiety and this frustration over all this. It actually makes me sick at times. I'm happy to take care of him, but at the same time I guess I feel kind of resentful. I have not taken care of ME in a long time. I miss all my doctor visits because I just don't feel alive enough to go. No energy left. Anxiety that causes palpitations. A sick stomach.

Other than taking an occasional Xanax and a nightly 1/2 Klonapin I'm not helping myself. Can anyone advise me on controlling my anger and agitation? Any time I have to learn anything new it just throws me into a fit... trying to read instructions, listen to techs tell me what to do... sitting through the nurse visits and the PT visits, trying to learn now to exercise him and the endless note-taking so I don't forget all the neat little tips and instructions they give me.

This is no life for him. I know he's unhappy. And God help me... I have wished he could just go on. I'm thankful for the few days when he seems a little better and can do some things for himself. But I am just so exhausted.

Thanks for listening. This is not really a MS post.

[Jules A]

Hi Marti,
I'm sorry to hear what you are going through and can not imagine the stress you must be under. It makes sense that you would be irritable and have a low frustration tolerance right now. Are you in therapy? Please don't be offended because I think most everyone can benefit from having someone impartial who will listen, offer strategies and coping skills. Some people tell me it is their "me time" they carve out of their busy schedule and helps recharge their batteries.

My husband and I have a pact that there will be zero extensive efforts to keep us alive and the minute one of us isn't able to care for their ADLs independently on what is anticipated to be more than a very short term basis it is off to skilled nursing. There are many reasons a team of trained professionals are paid to care for people who aren't able to care for themselves, least of all because it is NOT a one person job. I hope you are able to get some assistance and some time for yourself.

[Seasha]

Thanks for listening. This is not really a MS post.

Oh Marti - of course it is an MS post. You are both a caretaker and an MS patient! My heart goes out to you and I'm so sorry you are in this difficult position. I can't even imagine...

Is there any way possible that someone can come to your home to help you. A family member or friend? Even someone to be a note taker when you get new instructions on Sam's equipment or for his visits to the Dr. or PT? Even better can someone take him to the DR or PT occasionally to free you up from responsibilities?

YOU are not going to be of help to Sam when you are not feeling well yourself! My advice to you is try to make it to your own Dr appt and get on an steady anti-anxiety med, rather than an occasional Xanax for starters. It will calm things down in time with your agitation, anxiety and anger. Next, get some help at home! Even if you have to pay someone.

If you or Sam are on Social Security you can get some help there too- https://www.ssa.gov/OP_Home/ssact/title19/1929.htm

Here is what they offer:

(1) Homemaker/home health aide services.
(2) Chore services.
(3) Personal care services.
(4) Nursing care services provided by, or under the supervision of, a registered nurse.
(5) Respite care.
(6) Training for family members in managing the individual.
(7) Adult day care.
(8) In the case of an individual with chronic mental illness, day treatment or other partial hospitalization, psychosocial rehabilitation services, and clinic services (whether or not furnished in a facility).
(9) Such other home and community-based services (other than room and board) as the Secretary may approve.

Please take care! We care about you. Maybe someone else has advice to add to this.

[richjh101]

you need respite

Marti,
It sounds like you need respite care to recharge your batteries. You sound fried and I am concerned about your health. I know that stress is not helpful. I try to stay as stress free as possible. In your case I really feel for you. The previous post by Seasha gave some really good information on SSA.

My wife is my full time caregiver going on 20 years now. Being service connected I am allowed 4 weeks of respite care per year. In the early years I would have 6 or more exacerbations per year. Since 2000 my MS has been quite stable.

I really hope get some help. You are in my thoughts and payers.
Rich

[marti]

Oh Marti - of course it is an MS post. You are both a caretaker and an MS patient! My heart goes out to you and I'm so sorry you are in this difficult position. I can't even imagine...

Is there any way possible that someone can come to your home to help you. A family member or friend? Even someone to be a note taker when you get new instructions on Sam's equipment or for his visits to the Dr. or PT? Even better can someone take him to the DR or PT occasionally to free you up from responsibilities?

YOU are not going to be of help to Sam when you are not feeling well yourself! My advice to you is try to make it to your own Dr appt and get on an steady anti-anxiety med, rather than an occasional Xanax for starters. It will calm things down in time with your agitation, anxiety and anger. Next, get some help at home! Even if you have to pay someone.

If you or Sam are on Social Security you can get some help there too- https://www.ssa.gov/OP_Home/ssact/title19/1929.htm

Here is what they offer:

(1) Homemaker/home health aide services.
(2) Chore services.
(3) Personal care services.
(4) Nursing care services provided by, or under the supervision of, a registered nurse.
(5) Respite care.
(6) Training for family members in managing the individual.
(7) Adult day care.
(8) In the case of an individual with chronic mental illness, day treatment or other partial hospitalization, psychosocial rehabilitation services, and clinic services (whether or not furnished in a facility).
(9) Such other home and community-based services (other than room and board) as the Secretary may approve.

Please take care! We care about you. Maybe someone else has advice to add to this.

Thanks so much Seasha. I have turned to neighbors and family a few times already. I really hate the thought of someone moving in to help. I'm not a talker and don't want to have to be extra sociable during this. I know how that sounds.

We are getting home health care right now... a nurse and a physical therapist twice a week. That is so draining, although it is helpful. I might extend that when the time is up. I feel like I can do a lot, but then sometimes "a lot" is too much. I hate to give up. He is afraid I will put him in a home and forget about him. After 45 years I can't break his heart with that. Not yet anyway.

I know there are a lot of services available. Oxford home health care is supposed to get me in touch with a social worker to kick it around. Right now I'm so afraid that I will get sick and there will be no one to take care of Sam if I end up in the hosp. So I'm kind of working on finding a contingency plan just in case. The kids will help, but I really hate to take them away from their own families. I'm just hanging on the best I can.

So far none of the doctors have said anything about the chance of him not making it. So I keep hoping he will get at least a little better. But I don't see that happening.

Thanks for the sweet, heartfelt post. Guess this is what I needed right now.

We had a big storm today and I went to close the door and the screen blew in on me. Of course, there was no one to help and I had to fight my way through it alone. Sam was sitting in a good position to see me, but he can't see well. And he's almost deaf. So...... One more hurdle. Jeez!

[marti]

Marti,
It sounds like you need respite care to recharge your batteries. You sound fried and I am concerned about your health. I know that stress is not helpful. I try to stay as stress free as possible. In your case I really feel for you. The previous post by Seasha gave some really good information on SSA.

My wife is my full time caregiver going on 20 years now. Being service connected I am allowed 4 weeks of respite care per year. In the early years I would have 6 or more exacerbations per year. Since 2000 my MS has been quite stable.

I really hope get some help. You are in my thoughts and payers.
Rich

Thanks so much. I keep hearing the word "respite care" but also keep forgetting the word. It's exactly what I need. I have this feeling of being tethered to Sam... trapped. Terrible thing to say after 45 years. I just want to do the best I can, but I am a terrible nurse. No training for this kind of thing. I make mistakes, forget meds, never know what meds to give him for new problems. Things like that. It's like our home has been invaded by all these home health care people who are great, but are never here when something goes wrong. So far I've done all the heavy lifting (so to speak), but I know I can only do so much. I am a 97 lb weakling with MS and have to hang on.

[Seasha]

Marti - here's some information about respite care that you might find helpful. https://www.nia.nih.gov/health/what-respite-care

There is a locator link under the heading For More INformation where you can find services in your area. It's worth a try to see if it might help!

[msgijo]

Marti - It breaks my heart to hear of what you are going thru. I do understand about wanting to take care of Sam (both physically AND emotionally) and know how it can just wear you down to the point of being resentful and angry. Not at them, but just because it is simply too much to handle alone.

Funny (not really) but my husband asked yesterday if I would like a vacation. I told him that a vacation would take more energy than I had to give, but he then told me that he was talking about a vacation from him for a couple of days. While I don't know how I truly felt about it I was quick to assure him that it wasn't that bad taking care of everything.
But I am snapping at the least little things and starting to resent having to do so many things for him that I don't do for myself.

I am sorry that I don't have any suggestions for you, but will look into some of the suggestions that you have received.
Prayers for both of us .

[marti]

Marti - It breaks my heart to hear of what you are going thru. I do understand about wanting to take care of Sam (both physically AND emotionally) and know how it can just wear you down to the point of being resentful and angry. Not at them, but just because it is simply too much to handle alone.

Funny (not really) but my husband asked yesterday if I would like a vacation. I told him that a vacation would take more energy than I had to give, but he then told me that he was talking about a vacation from him for a couple of days. While I don't know how I truly felt about it I was quick to assure him that it wasn't that bad taking care of everything.
But I am snapping at the least little things and starting to resent having to do so many things for him that I don't do for myself.

I am sorry that I don't have any suggestions for you, but will look into some of the suggestions that you have received.
Prayers for both of us .

Sounds just like my song. I am up now at 4:41 am. because he had another hallucination and was fiddling with his oxygen. I put him in his chair with a movie, changed his oxygen to the portable and yelled at him to shut up and go to sleep. I hate myself for that. Do NOT want to hurt his feelings. I am going to look into the visiting nurse assn. This nighttime stuff is the hardest. I took a whole Klonapin and now it's wasted on me. I'll never get back to sleep. Sending you something I wrote awhile back just to give you an idea. I know you are well aware of this situation ... just like yours. But I have to share.


THIS IS HOW MY DAYS GO.

EARLY IN THE A.M. I CLEAN UP THE DOG PEE. EVERY DAY. YES, I WASH THE FLOOR EVERY DAY. I DO THIS SHORTLY AFTER I'VE OPENED MY EYES. YOU CAN SEE WHY I DON'T WANT PETS!

IF THE CAT STAYED IN OVERNIGHT I CLEAN OUT HIS LITTER BOX.

I CLEAN UP ANY AND ALL MESSES SAM HAS MADE DURING THE NIGHT. BLESS HIS HEART, HE TRIES TO MAKE BREAKFAST OR POUR A CUP OF COFFEE. BUT BECAUSE HE CAN'T SEE WELL, MOST OF EVERYTHING LANDS ON THE FLOOR. SO, I'M WIPING, WASHING, MOPPING, AND SCRUBBING ALL DAY LONG. THERE'S NO TELLING WHAT'S ON THE BOTTOM OF HIS FEET AT ANY GIVEN TIME. HE CAN'T FEEL THEM AND HAS NO PERIPHERAL VISION SO HE DOESN'T KNOW WHAT HE'S TRACKING AROUND WITH HIS STEPS.

I MAKE A POT OF COFFEE FOR SAM. IF I DON'T GET THIS DONE BEFORE HE GETS UP I GET "THE LOOK". HE GIVES ME SUBTLE LITTLE HINTS THAT HE WANTS COFFEE.

I TRY TO CONVINCE SAM THAT THERE IS NO ONE CHASING HIM AND NO STRANGERS IN THE HOUSE. I TELL HIM EVERY DAY THAT HE HAD A VIVID DREAM OR A HALLUCINATION. THIS IS A HEARTBREAKER.

I PUT HIS PILLS BESIDE HIS CHAIR WITH A CUP OF COFFEE OR WATER.

I HAVE TO STRAIGHTEN HIM OUT ON WHAT DAY IT IS AND WHAT TIME IT IS. THIS USUALLY CAUSES ARGUMENTS. I HAVE TO EXPLAIN EVERY LITTLE THING THAT I HAVE DONE FOR HIM BUT HE NEVER UNDERSTANDS AND GETS IT ALL CONFUSED. IT'S A "NO WIN" SITUATION.

SOMETIMES IN BETWEEN ALL THIS I TRY TO GO TO THE BATHROOM.

I MAKE MYSELF A CUP OF TEA.

I PLAY THE GUESSING GAME ABOUT WHETHER HE WANTS TO EAT. I USUALLY GET THIS WRONG. SO I COOK BREAKFAST WHEN HE DOESN'T WANT IT, AND I LET IT SLIDE AND THEN FIND OUT HE REALLY DID WANT TO EAT. I DO ALL THIS IN PAIN EVERY DAY. AND I CANNOT PLEASE HIM.

EVERY DAY SAM ASKS ME IF HE HAS ANY APPOINTMENTS. I HAVE TOLD HIM TO CHECK THE CALENDAR BECAUSE I WRITE ALL APPOINTMENTS ON IT A MONTH AT A TIME. HE DOESN'T REMEMBER TO LOOK AT THE CALENDAR.

SOME DAYS HE GETS DEMANDING. FROM THE MINUTE HE OPENS HIS EYES (OR I DO) HE IS TELLING ME WHAT HE WANTS OR WHAT HE WANTS ME TO GET HIM. THEN HE GETS MAD IF I TELL HIM I'M NOT UP TO IT AT THAT TIME. HE HAS NO IDEA THAT THERE IS SOMEONE ELSE IN THIS HOUSE WHO IS ILL.

EVERY DAY I TELL MY SELF "HE CAN'T HELP IT" BUT IT STILL MAKES ME CRAZY. HE CAN'T SEE WELL AND HE CAN'T THINK WELL. THANK GOODNESS HE CAN STILL DO SOME THINGS FOR HIMSELF, LIKE GOING TO THE BATHROOM. EVERY DAY I ASK GOD TO GIVE ME PATIENCE. EVERY DAY I FAIL TO GET PATIENCE.

EVERY SINGLE DAY I WASH THE BATHROOM FLOOR WHERE ACCIDENTS HAPPEN. AND EVERY SINGLE DAY I WASH OFF THE RESIDUE OF TOOTH BRUSHING FROM THE BATHROOM MIRRORS. EVERY DAY.

I FEED AND WATER SAM'S DOGS TWICE A DAY. I'M AFRAID IF SOMETHING HAPPENED TO ME THOSE DOGS WOULD NOT GET FRESH WATER OR FOOD. I'M ALSO THE ONE WHO BUYS THEIR FOOD AND BISCUITS. OF COURSE, THIS INCLUDES THE CAT. BUT I DON'T EXPECT SAM TO EVER REMEMBER THAT HE NEEDS TO BE FED TOO.

IT IS SO HARD TO WATCH SAM DETERIORATE WHILE I REMEMBER HOW HE WAS AS A YOUNGER MAN. SOMETIMES I WATCH HIM BREAK DOWN AND CRY. THIS IS THE HARDEST THING TO WATCH.


SOME DAYS ARE A LITTLE BETTER. THERE IS NO RHYME OR REASON TO HIS HEALTH ISSUES. SOME DAYS HE ALMOST SEEMS LIKE THE OLD SAM FROM A FEW YEARS AGO. HE IS ABLE TO GIVE HIS OWN INSULIN WHICH IS GREAT BECAUSE I'M NOT SURE I COULD DO THAT.

I USUALLY HAVE TO HELP HIM GET DRESSED. HE CAN'T BEND OVER VERY WELL. WE ALMOST LIVE SEPARATE LIVES. HE IS TERRIBLY HARD OF HEARING SO HE CRANKS UP THE TV TO THE POINT THAT I HAVE TO LEAVE THE ROOM OR USE EAR PLUGS.

EVERY DAY I CHECK TO MAKE SURE HE'S BREATHING IN HIS SLEEP. SOME DAYS I PRAY THAT IF THIS IS THE DAY HE WILL SLIP AWAY IN HIS SLEEP. AND EVERY DAY I PRAY HE WILL GO ON FOREVER.

[marti]

Sorry to prolong this but I just need to talk to some faceless friends.

Last night at 3:15 am Sam was ringing the bedside bell I got for him. So I ran out, half drugged by my Klonapin ( I actually took a whole pill last night ) . He was having another hallucination. And he was all confused about his oxygen. He thought there were people out in the garage who needed oxygen too.

I got him settled back in the recliner with a movie and I was very grouchy with him. Then the dogs needed to go out. So I had to fiddle with them. I think I got back to bed by 4:30.

The worst part is that I made him cry. And this morning his blood sugar had tanked. Now he's depressed and just cannot understand that I am sick too. I tried to tell him I am just exhausted and need help. He told me I can send him away somewhere, meaning a home. I told him I would not do that. I just want my old Sam back. But I know he will never be the same. He will never go fishing again. Or to a gun show or hunting or anything he used to enjoy. This is the most heartbreaking phase of our lives.

Sorry guys. I just had to get this off my heart. Of course, it will always be there.

[marti]

Hi Marti,
I'm sorry to hear what you are going through and can not imagine the stress you must be under. It makes sense that you would be irritable and have a low frustration tolerance right now. Are you in therapy? Please don't be offended because I think most everyone can benefit from having someone impartial who will listen, offer strategies and coping skills. Some people tell me it is their "me time" they carve out of their busy schedule and helps recharge their batteries.

My husband and I have a pact that there will be zero extensive efforts to keep us alive and the minute one of us isn't able to care for their ADLs independently on what is anticipated to be more than a very short term basis it is off to skilled nursing. There are many reasons a team of trained professionals are paid to care for people who aren't able to care for themselves, least of all because it is NOT a one person job. I hope you are able to get some assistance and some time for yourself.

You guys are my therapy. I can barely make my usual appointments, let alone a new doctor. Do you have your pact in writing somewhere? Is your family aware of your wishes? We have something pretty much like that, but I'm not sure if my kids will be able to follow through when and if the time comes.

[pennstater]

Hi Marti,

My heart goes out to you. It is so hard to see someone you love suffer and progress. Even harder when you don't feel well either.

As others have said, you definitely need respite care. You can't do it alone, even though you may want to.

If you could, I would look into an aide for some night time relief, whether it is one night, several, or every night during the week. It won't help with your dogs, but hopefully will with Sam. Getting some rest may help get you thru the days.

When we had my Dad here, we did use an assisted living facility for a week here or there. They have a respite care program. The fee charged was a flat fee for room, meals, etc.. and then variable based on the amount of assistance needed, both for activities of daily living ( showering, mouth care, dressing, shaving, etc...) and for nursing care. It may be something to look into so that you can get a break and recharge some.

I know you don't like to ask your kids for help. But I would make sure they understand how things are and what needs to be done, his medication lists/dosages, contacts etc... Especially important should you get sick.

Take care.

[robert152]

Marti,

If I were in Sams condition I would want to live nearby in an assisted living community, maybe a faith based one where other people are doing the heavy lifting. Would you consider that? Maybe for both of you?? Separate rooms,community common areas? We live in New Jersey and it would be very expensive here but not so much in the heartland. Is this even possible?

I would not want to witness what my illness was doing to you. Maybe Sam, deep down feels the same.

No matter what you do long term it appears you need a break right now ASAP.

Bob

[Jules A]

You guys are my therapy. I can barely make my usual appointments, let alone a new doctor. Do you have your pact in writing somewhere? Is your family aware of your wishes? We have something pretty much like that, but I'm not sure if my kids will be able to follow through when and if the time comes.

A professional therapist might be able to offer coping strategies and resources to help you so you aren't unnecessarily venting on your husband or pets? In addition to us, of course.

Yes we have advanced directives with clear instructions that we want nothing but comfort medications in an effort to avoid prolonging suffering. Since we are both in healthcare we have seen the outcome of heroic measures and have no interest in that. Obviously we would love it if we could live in our home until we died peacefully in our sleep but that doesn't seem to hardly ever happen so we are prepared to going to a nursing home when the time comes. We don't have children so no one to contest our wishes.

[marti]

Oh Marti - of course it is an MS post. You are both a caretaker and an MS patient! My heart goes out to you and I'm so sorry you are in this difficult position. I can't even imagine...

Is there any way possible that someone can come to your home to help you. A family member or friend? Even someone to be a note taker when you get new instructions on Sam's equipment or for his visits to the Dr. or PT? Even better can someone take him to the DR or PT occasionally to free you up from responsibilities?

YOU are not going to be of help to Sam when you are not feeling well yourself! My advice to you is try to make it to your own Dr appt and get on an steady anti-anxiety med, rather than an occasional Xanax for starters. It will calm things down in time with your agitation, anxiety and anger. Next, get some help at home! Even if you have to pay someone.

If you or Sam are on Social Security you can get some help there too- https://www.ssa.gov/OP_Home/ssact/title19/1929.htm

Here is what they offer:

(1) Homemaker/home health aide services.
(2) Chore services.
(3) Personal care services.
(4) Nursing care services provided by, or under the supervision of, a registered nurse.
(5) Respite care.
(6) Training for family members in managing the individual.
(7) Adult day care.
(8) In the case of an individual with chronic mental illness, day treatment or other partial hospitalization, psychosocial rehabilitation services, and clinic services (whether or not furnished in a facility).
(9) Such other home and community-based services (other than room and board) as the Secretary may approve.

Please take care! We care about you. Maybe someone else has advice to add to this.

I've been meaning to reply to this. Maybe I did, but forgot something important that you said. You talked about the hit or miss way I take meds. I have to agree with you and have been told before to take them on a regular basis. I have never taken the Xanax correctly. I just thought it was better to take half the pill as needed instead of a steady dose. And I usually only take half a Klonapin at night. My script for that one says once a day. Does that sound right?? I think the Xanax says 3 times a day. Please explain to me why it's better to take as directed instead of the way I've been doing it. I need re enforcement on this issue. I hate meds, but the Xanax is really helpful. My doctor friend has tried and tried to get me to take these meds the right way. I know you and she are right, but I'm just not wanting to become addicted although I am dependent to a point. Thanks again.