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How am I doing today?


April 6, 2014 Masks

Always trying to find the right attitude; the response that will generate some closeness,
trying to give and share but Mom's responses are judgmental, sarcastic, apathetic, condescending,
disrespectful, angry, defensive, or hostile. There is no more common ground.

So I wear a mask, a wooden mask, a shield.
I am barely behind this mask.
I checked out of Abuseville a long time ago,
She'll won't even think of places to look for me,
Nor does she really care anymore.
I am on a permanent holiday of liberation:
It's a soulful expanse of God's ocean where bliss rolls in and out with my precious breath.
I might have to be here but I can't hear her anymore.
I am tuning in to the birds, the trees that pass by the car window,
as she rambles on with her forceful scratchy voice, machine gun style.

If I am not tuning out and being elsewhere I am mentally making my escape routes;
what to cook for dinner, what projects to concentrate on to get my life back on track.
My love is barely alive. I feel dirty and uncomfortable for that.
I am fueled by obligation, memories of better days with Mom.
These days I discover survival tactics. New ones every week.
This week it was dancing wildly in my apartment
to songs I loved when I was young, carefree, and far away from her.
Songs, that remind me of who I was, how I was becoming myself.

When I saw Mom, it was a few times a year and mostly we had fun.
She really was the love of my life: my friend, my mother, my confidant. And I believed all her stories and blamed the others in her life as she did. Now I see a different picture. I am like the blamed ones.
In the older days, after the childhood traumas and before today,
my mother and I danced at ballroom parties. I'd go to mom's apartment and her bed was piled with clothes for me to try on and to wear to that special dance.
I saw the annoying remarks, the nervous energy she had, but it was funny, entertaining. I didn't get wounded.

Today, the kind words from her barely are uttered and never without a stabbing ending comment.
I am so weary of trying to be present for her.
And this mask, this wooden mask, is heavier every day.
So we will go food shopping, and errand shopping and go to doctor appointments, but I'm not here
like Mom,
not ever here again, in the same way as we were before.
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LadeeM MIL is not a person of faith...we are, my husband is an elder, but she let us know long ago she didn't want anything to do with it...she used to politely bow her head when he asked the blessing at meal time but that was as far as she was going...her fear is that since her TIA her sight is gone...being plunged into total darkness would scare anyone...she wants us to help her be able to see again. Sitting with her and holding her hand and reassuring her that she would be taken care of seemed to calm her down. She's sleeping more and more and eating less and less...yesterday it was one Ensure 2 bites of applesauce with her pills in it and a couple of sips of water...counting the time she dozes in her chair she's probably sleeping 20+ hours a day...she may not even get into her chair today...hard to tell...
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LOL..if I was going to have this dog stuffed I'd do him in myself and do it now and put him in his bed...don't think MIL would know the difference at this point, that would be something I would not have to deal with now...the other night my husband decided to take the surround system apart to work on it (both trying to find things to do to keep from going bonkers) so he's down on his knees with his head in a cabinet full of wires and there was Red right beside him looking in to see what's going on (dog is blind as a bat) with his tail wagging so hard I thought he was going to knock himself over...we both got a chuckle out of it...I guess I have to admit that Red is not all bad...till the next puddle.
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Gosh Red I guess this is at least a good way to keep you busy and your mind off what is going on. Bless You for caring so much.
I have managed to curb my husband from "investing" in coins gold and junk silver. I don't think he got scammed. Then there was the stock market account but that at least has been cashed out. I am just sharing not looking for advice!!!!. he is convinced the government will come knocking on everyone's door in the near future and seize all our valuables and bank accounts. Well they might and the president might declare himself a dictator. It's all possible. But at 75 with plenty of health problems I prefer not to stress about it.
Some especially my daughters would decribe me as a hoarder and can't wait to give me a good clear out. I am an avid crafter and addicted to rummage and garage sales so pick up all sorts of bits and pieces which DO come in handy or spark the creative juices.
My husband does not have dementia. A neurologist told him so but he sure gives a good impression at times!!!!!!!. I wonder if they have Internet in the FEMA camps so I can keep in touch with all my AC friends.
Many hugs,love and blessing Red I can ony admire what you have done for MIL.Will you have the dog stuffed when his time comes?
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Veronica...she had given our daughter her collection years ago and some were worth quite a bit (not 500 ) but lot's more than what she paid...when our daughter wanted to sell them we found that the ones that brought the most were the ones that were regular dolls that kids play with that had been saved for years...the ones bought for a fortune as "collector dolls" were very rarely worth what she had paid for them...that's why I wanted my husband to research this one on line...daughter was able to sell one of the collection for 900 but MIL had paid 1500...real jewels don't ya know...our daughter just kept the Fergas for our granddaughter because she thought they were really pretty and look good in her room...had to build a "tree house" in her room so that she could see them without getting to them to destroy them...not making any snap decisions. Just starting to think about what to do with some of her collections...the worst is her "gold coins" that are not worth the price of the box they came in...the 3 free ones they ship about every other month to try and get you hooked should have been a clue...took 2 trips to coin dealers to convince her that they were worthless...she had been buying them for years and stashing them away before we found out about it...after we moved her in with us and had her phone transferred to our number we were getting calls from every one all the time...one in particular was so aggressive and rude on the phone that we reported him to the police...some creep selling stuff out of his garage in another state...it was like she had a crush on the UPS guy...ordered stuff constantly...she had money from a house her brother left her and managed to blow through most of it...now I'm trying to figure out what to do with all the stuff she bought...had a garage sale last summer and sold a lot of her clothes...she had 140 tops and 22 pairs of tennis shoes...when she moved in...now she stays in pj's and slippers...had (has) a sweater with so much bling on it that when she tried to wear it when she was still dressing for the day it gave her a back ache from the weight...just lots of stuff to deal with...
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Off to church..... I will say special prayers for all caregivers! Hope you have a good day!
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Assa, hope you have a laptop... so you can set on the porch and let us know what green and pretty things you are seeing now.... I know this winter has added to your distress... so now you can go out side and see COLOR and smell the spring..... sending you lots of hugs this morning... and by the way... our Bluebonnets are exploding everywhere right now.... makes my soul feel happy to see rebirth..... love ya...
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Red, can't remember if you said mil was involved in a church or has a faith of her own... possibly she is asking for someone of the 'cloth' to be with her and possibly a prayer??? It is so hard to understand what she is meaning when she says she needs help..... she is so frightened.... and that breaks my heart....
My dad was the same way, and in the end , God saw fit to be present for his ragged old soul.... and he went peacefully... I know this is hard.... for everyone... lots of prayers for you and your family.
The doll.... I make 'art dolls' and some of them sell for lots of money... not mine, but artists that have a 'name'... some up to $1500.... so that paperwork was with the will for a reason.... like was said, maybe now is not the time to investigate, but dolls have an incredible collector factor . And how awesome that mil worked so hard and got something for herself that she cherished....sometimes we forget that they had this huge life before it was our turn to participate..... sending all of you hugs...
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Monday, Glad has made a great point in saying our grief is of a different variety.... our lives are not normal, and our grief goes beyond what others understand..... you have come here and shared how you are feeling... and we are concerned about you.... please reach out to someone, somehow, someway in your community to help you !!!!! This job takes all of us to the pit of emptiness, with nothing left over... no strength to get back up sometimes.... and we DO understand....but there is only so much we can do for you here... we will support you, please believe that.... but you need something we can not provide and that is a hand to hold and a real shoulder to cry on.....please let us know how you are..... hugs and prayers for the most difficult part of your journey.
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Monday-
I cannot imagine how hard this is for you. Have you located a grief support group? Caregivers go through so much there should be support for these special situations. Our lives revolve around the one we are caring for and our grief is of a different variety.
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6 months ago this morning at 11:05 AM
sorrow replaced joy.
mourning moved in.
endless weeping took over.
detachment, isolation, and darkness
illuminates the covered-windowed rooms.
if this grief is the price i pay for love
I will never ever ever ever ever ever ever ever ever ever ever ever ever ever ever ever ever
love again.
I count the days
until God takes me, too.
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Yaaa! Spring seems to finally be here!
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Appricot, You are doing a great job....... one day at a time!
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Appricot, Norest mentioned sleep apnea for your husband, but to me the sound of mucous in hubby's throat sounds more like swallowing difficulties. Does he choke on food or liquids? take a long time to chew or swallow, loosing weight, prefer soft foods or leave food on his plate because it has become cold and he has lost interest?
Talk to his Dr about this. You can take him in but there is nothing they can do to diagnose it without testing. he can have a barium swallow which is an x-ray while he swallows a chalky liquid, be evaluated by a speech and swallowing expert where he would be asked to swallow various textures of food covered in barium. Then there is a gastroscopy where and instrument is passed through the mouth into the stomach. This is done under sedation and the throat is numbed.. there is another test where a tube is passed through the nose into the oesophagus and vasrious pressure readings are taken to judge how well the oesophagus is able to pass food along.
Difficulty swallowing or Dysphagia is very common as we age and can have several causes, mechanical, in which the muscles become weaken. neurological where nerves are affected as in injury, stroke, disease bone damage from such things as arthritis or osteoporosis. An otherwise healthy adult can usually deal with this themselves by learning which foods to avoid, taking small mouthfulls,frequesnt small meals, sitting upright to eat. and making smoothies for extra nutrition. fiber can be incorporated into smoothies with powder suppliments plus extra protien.
it is potentially very serious in that the sufferer can literally choke to death and the experience is terrifying. caregivers should familiarize themselves with the Heimlick manouver. A healthy adult can accomplish this themselves by leaning over the back of a dining chair.
The feeling of a mucous plug can be lessened by keeping the patient well hydrated and using a humidifier if the air is very dry. As a last resort tube feeding can be employed.
Any testing will depend on your husbands level of co-operation but even without it precautions can be taken at home
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Red it is just possible that Mom's doll could be worth quite a lot of money especially if it is in new condition with the original box and paperwork. now is not the time but set it aside and later do the research. It was of great value to her which was why the paperwork was in the safe. One thing yoou caould do is have it appraised, donate it and take the value as a tax deductions if you pay tax.
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Appricot, he maybe having some sleep apnea. My mother in law was doing that and would stop breathing for 20 - 30 seconds. Glad he slept longer for you. It is so hard on us caregivers when we are sleep deprived.
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Tonight is the first time in almost a one year since my husband is sleeping for more than 5 hours straight without going to the bathroom. His diapers may be wet, but I don’t care. I can take care of it once he wakes up. The important thing for my husband at this time is to have a good sleep. Up until very recently, he woke up almost every 2 hours during night, and so as I. One thing though, he recently started some peculiar snoring. It’s not the one he used to have before he was diagnosed. Something like, he has phylum in the throat and it’s too thick to get rid of it.
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Just spent a couple of hours holding MIL hand and assuring her that we will be here with her and take care of her...she can't see anything today and keeps saying she needs help...she slept 14 hours straight...got up and dozed off and on in her chair for about 3 then was ready to go back to bed...was almost asleep before I could get her eye meds in...the anti anxiety pills the Hospice nurse gave me really do help a lot...going through her papers today to try and find out if she did prepay for cremation and found some papers for it but when I called they said they would not be able to check on it till Monday when the office is open...tucked in with her will is the paperwork for a stupid doll named Angela Appleseed that her sister had bought and paid over $500.00 in 83...seriously...told my husband to get to a doll collectors site on the net and see what we can do about selling the thing...she and both sisters were serious doll collectors for a long time...I just didn't think the paperwork for one would be up there in importance with the last will and testament in the safe...this is the grow ups collection when Angela was 5...the grown version at age 20 was offered for 1200.00, of course you could get one in a more conservative outfit for 1080.00 if you wanted to save a little money...Who does that???? Mom has never been a wealthy woman...worked hard all her life for Safeway...her sister retired from the telephone company as head operator...I guess they must have loved dolls a whole lot more than I thought...they considered them investments, that they loved...of course all the paperwork promises how the dolls will continue to increase in value...I hate the way people bilk old people out of their money!!!
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Wanting, I'm sure what you are dealing with is extremely difficult. Hugs to you. When I first came to be with mom I was so frustrated with her doctor. After about six months I wrote a letter to him to advocate for my mom. But mainly I let him know how frustrated I was with mom's care. Like, isn't there more that can be done? Research, anything? The nest time I took mom to see him he actually thanked me for the letter ans said he really needed a kick in the backside. Talk about shocked! It was very difficult, that woman was not my mother, I wanted her back. Here we are two years later and naturally mom is progressing in her disease. I actually enjoy the doctor visits, they are so good at giving me the good ol pat on the back. Getting aggressive with the doc will only help if you are doing assertive advocating for mom.

hope your night goes well.
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one of the better days today. She was off and on, it's a strange thing, this mixture of being aware but not. She knows where she is, she can get up and get herself some ice cream (and tell me to get my own) but can't remember the deaths of her mother and brothers and continually asks where the 'babies' are. but at least the repetitive questions have lessened, she sat up and watched tv or sat at the table with her head up instead of in her hands so I am classing this as a YAY day...hope tonight is a good one.

Brothers are supposed to come tomorrow, I hope the visit is pleasant and she enjoys it.

Sister is getting upset and wanting to fight with the doctor "why didn't he DO something when we first talked to him about it!" "We have to be more aggressive with him!"

I am trying to be a rock for my mom....I can't fight with the doc, can't expend the energy on what might have been. I have done the best I could do with what info I had.

Oh I do not want to lose my Mom. I am not ready for this. My heart is breaking... intellectually, I think "well, at least she isn't afraid of dying anymore...she won't really know she's dying" but the little kid in me is crying "don't go away Mom!"

I could SOOO fall apart if I allowed myself to. I am taking antidepressants myself and doing gardening...and I am asking for help..just so sad.
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Red... get a gait belt... it will give you a tremendous amount of support when trying to help MIL up and down. Even when mother was fighting it, I could lift her up without hurting her (although to hear her yell and carry on, you would've thought I was killing her!). I know its difficult to leave her in bed, but there comes a time when that is all you can do. It broke my heart to have to tell mother no, she had to stay in bed. I was so afraid she would fall again, and it was almost impossible for me to pick her up off the floor.

Fried... So many illnesses cause these types of behaviors in our loved ones. You might also have dad checked for a UTI... that will cause LOADS of erratic behaviors!

Everyone... Have a GREAT evening!
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Love not live. Haha
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It's so hard watching end of life. I had the hearing Wed. And I believe mom and I won. A gal filed a claim saying I fired her . Which I didn't. I just live my mom so much and it's so hard watching her. I think she it's afraid to die and plus she doesn't want to leave me. I have been having better days both health wise not hurting for awhile. I finally just had to try to quit worrying about everything but plus my mom had been behaving so I can say for once on here it's going ok. Knock on wood..
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Red so sorry I know it's scary and heart wrenching. Just hold her hand and let her know your there.. HUGS...
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Oh, Red, your MIL may be fighting for all her worth to avoid that ultimate "end" of the road. Father is sooo terrified of dying. I can see him doing just like MIL. His words may say he wants death, but his actions reflect the complete opposite. My father refused to believe that mom could no longer "walk" with his and my assistance. I had warned him but he insisted she can walk. We got her off the hospital bed to stand up. She no longer could support her weight. Down she went to the floor - even with father holding her up with the long towel around her torso and him in front of her, while I was behind her to support her. Her dead weight was waaaay too much for both of us. She landed on the floor next to the bed. We tried and tried to lift her up. Couldn't. So, I had to go and get my BIL to come and help us. With 2 grown men, they struggled to get her up and back onto the bed. That was the last time father and I ever tried to get her off the bed. I'm just so glad that you and hubby are so much wiser than my father (who was denial of mom's situation.)

With mom, towards the end, she was freezing despite being covered with blankets. Be careful, one time, I smelled her sweat. Opened the blanket, and she was soaking wet. Really soaking wet, with chilly skin. Her hospital gown felt as if it just came out of the washer. The waterproof pad and the lifter were also soaking wet. Yet, her skin was icy cold. After that, I had to make sure once in a while to check if she's okay underneath the blanket.

The cycle of life. As one is moving towards the end of life, another one enters your lives from the opposite end. Wow. You have raised a good son who has values. Most people would just automatically say that that is not my child. But your son was willing to step up to the plate and to actually insist on visitation rights. You know, that is soooo rare. I'm glad that you shared this with us. {{{Hugs}}}
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How beautiful Red, that this young man may be your grandson..... and even if it turns out he isn't... still sounds like a 'new memeber' of the family.... you can still give 'grama hugs' regardless.... please keep us updated about this wonderful surprise..... and if you gut is in a knot , imagine how your son is feeling... prayers for this to have a great outcome....

give mil hugs for me..... she is on the road 'home' and not giving up yet..... I know this is hard....but she is aware of how much she is loved... and in the end, that's all that matters anyway.....
hugs to you Red.
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Reddog.... thank you for sharing such a personal moment..... If he turns out to be your grandson, I already know he will be loved by you for after you said you have a lot of hugs to make up for!
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Thank you all for your concern and suggestions, the Hospice nurse has given me the suppositories for fever but so far she has just been really chilled and wanting more covers. I would not be getting her out of bed except that is what she wants and we are trying to keep her as comfortable as we can...it's like she's trying to outrun the whole thing by having us move her around...in the middle of this whole mess I was contacted by a young man who believes and with good reason that he's our 20 year old grandson...he messaged me on FB the same day that our son was deploying (for lack of a better word, I think of it as a military term but he's out now and working as a test pilot for a private company. I got hold of our son at the airport in DC just before he was leaving the country...he will be gone 2-3 months...not sure yet...can you imagine how off the wall that must sound to a kid whose been wanting to meet who he believes is his father for his whole life. This was a girl that he barely knew and dated for only a couple of weeks...she was with someone else just before and just after so when she told our son she was pregnant he was willing to support his child but under the circumstances said he wanted a paternity test done...he also had an attorney and wanted visitation rights if it turned out to be his child...she got defensive and told the attorney to forget it wasn't his kid anyway and slapped a restraining order on our son???not sure why on that because he certainly wasn't beating the bushes to have the right to support someone elses child...none of it made much sense but we never knew for sure whether it was our grandchild or not. I just got an email from our son that they have been emailing back and forth and he thinks things are ok and hopes to hold it on that level till he can get back. The young man said he's fairly sure that our son is his father and that he's waited 20 years to get to know him and he's willing to wait a little while longer...that was his message to me...I never knew my dad so this is breaking my heart to think this kid has gone through this, because I know first hand what it's like to wonder about who your family is and why things were that way...he did say that he didn't feel like our son walked out on him or anything like that, but it is hard to even imagine what all he's been told. From what I could see on his FB account he seems like a nice responsible young man...he works and is going to college. He looks clean cut and there is no bad language on his account that he's posted or his friends either for matter...I'm wise enough to know I need to stand back and let what ever is going to happen between him and our son happen but IT"S KILLING ME...If that's my grandson, I've got 20 years of hugs to make up for...that I don't even know...I'd have my gut tied in a knot over this if MIL was as healthy as a horse...as it is she may out last me...
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Dear Red. you can do no better, there is no better to be done. If the anxiety medicine is not working request an increase.Wouldn't it be better for her to be drowsy than filled with anxiety and fear for whatever time she has left. At this point why try and get her in and out of bed. I realize it is "good' for her and helps prevent presure sores but it also has major risks now she is so helpless. What if she slips and breaks something. No surgeon would consider an operation. As far as the Plavix is concerned well I won't second guess another hospice nurse and if she can take the pill no harm done. The usual practice is to discontinue all possible medications and just give those for pain anxiety and nausia. don't push the Ensure if she will drink fine but don't worry about it. keep her mouth moist and clean for comfort. Your Hospice nurse should give you some foam swabs on sticks like huge Q tips which makes mouth hygiene easier. Take turns with your husband sitting with her so you can both rest. Turn her and change if necessary when you relieve each other. if she runs a fever just wash her down with a luke warm wash cloth. You can get tylenol suppositories to reduce the fever. if you can't get them and she can't swallow liquid you can just use the plain white tablets rectally. All he pain and anxiety meds can also be given rectally. Only use something like KY jell which is water soluble not something vasiline based as the meds wont absorb properly. Try lying beside her and hold her if she gets restless. Keep playing the music and maybe light some scented candles. Lavender is very calming. Thinking of you Blessings
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