The Caregiver & Dysfunctional Families: How are you doing?

Glad don't be too fast to write Mom off. Any kind of serious illness like your mom has just endured can make the dementia far worse at least to the short term.
You know what a toll this has taken on you so imagine what poor Mom had to endure with all the pain and the proceedures she did not understand.

Finally, brought my laptop to the hospital. My tablet is too slow to access this site on the hospital WiFi. She is so freaking disoriented tonight, driving me nutty! Keeps asking if her little girls are ok home alone, Now she thinks she is in a fancy hotel. They have given her Xanax twice, Seroquel, and Haldol, and her darn brain still keeps going and going, and going! It is a very intense version of sundowning. What I would give for a small glass of wine for her. And a fifth of something to knock me out! Maybe a sledge hammer!

And thank you everyone.

I drove past my mom's house today...the cars parked on the street was unbelievable. My first thought was...all these people walking through my family home looking for bargains...the tears flowed even as I know we have to do this.

I talked with sis, she said she had the same reaction...I was happy to hear she felt the same way and it just wasn't me.

Hang in there Glad......
Full moon tonight?

Sharyn... it is so hard ..... all the losses for you. Its ok to be upset.... cry if you want... tears are very healing.

Thank you modest...it is harder than I expected.

My kindle changed norest ...sorry.

Sharyn, I don't think you will ever forget the loss of your childhood home. When I was born and raised until age 5 or 6, we used to live right on the beach. We walk out of our stilted house, go down the stairs, and just right on our back yard is the pure white sand and the ocean. Our parents were very strict so we never went into the water unless an adult was with us. But we had great fun looking for sand crabs, coconut crabs (dig holes in the sand) and little sand critters in their shells. I also loved to collect these "crystal" rocks. They were so very pretty. It fascinated me. We moved away to our new home that was inland. I still think fondly of our old home as I drive by the area. My parents are both local natives (brown-skinned). Their ancestors can go back to the Spanish when they invaded our island over a century ago. Anyway, my siblings looked Asian/Brown skinned children. When we were playing in the front yard where the main road is, my older siblings said that the white Americans would honk, wave and call greetings to me (age up 5). I was the only child among the kids who was white skinned with red hair. (Parents' relatives all thought that my mom must have fooled around with a white American. Wonder if that was one reason my mom hated me?)

Glad, I hope your mom's new behavior is not going to be her New Norm. Hopefully we can hope that it's only because she's in a New environment, and seeing new people constantly, and the noises surrounding her. {{Hugs!!}}

Glad have they thought about the fact that maybe the drugs are actually making her worse. The tendancy is to think that nothing is working and keep increasing the dose and adding other meds. The elderly are very sensitive to drugs because the kidneys and liver are no longer as efficient at eliminating meds and and they tend to remain in the system and the effecst tends to build up. If Mom is in an acute bed chances are the staff have little or no experience with dealing with the geriatric population. It is worth asking a few questions anyway.
Norest mentioned the full moon. I do believe that often has an effect

Hi Everybody,

Yes, I've been on hiatus.....Feb.-now got very hectic and busy for me.
I was out of the country, and had hard time logging in. We had a rough Mercury Retrograde this time around, which affected communication on different levels for people. Thank you Emjo, and Alison for asking about me.

I'm slowly catching up reading, and still not quite awake, but w/respond and really have missed all of you.

Much Love & Light! Margeaux

Hello everyone, thank you for all your words of encouragement! Once I decided to take my laptop to the hospital instead of my tablet I was able to access this site. You are all so kind and I appreciate hearing your experiences and thoughts on what may be down the road for my mom and me too.

They released her from the hospital today, we just got home about a half an hour ago. She is doing much, much better, but obviously very tired and drained. Hopefully she will go to bed early tonight and easier in her own environment. The stay was very disorienting for her! No help from sibs, naturally, and found help from a couple of home care agencies so I was able to leave the hospital early last night. And help from them to get mom's hubby to a doctor appointment today, that thankfully was right next door to the hospital. All ok with him as well, though I have seen a definite cognitive decline in the last couple of months. I suspect a series of TIA's, and the CT will be sometime this week.

Again, thank you for your support, kind words and encouragement.

This is my rant of anger toward my sister who once again volunteered me to take care of things for my brother this time. I sent my sister an email telling her, "While I understand and have compassion for your and our brother's health issue, I would appreciate it if you did not volunteer me to be the family gopher. Just because I live locally, I do have a life of my own and I know that mom set me up to be the family gopher, I do not appreciate my time and family life being constantly uprooted because you or our brother cannot tend to things that you want to get from mom's house."
I am very tired of running around doing all the errands on my days off while my sister relaxes and rests on her days off. Not going to do it anymore!

Good for you Sharyn!

Norest~This has been long time coming in getting my sister respect my life. Thank you for your support♥!!

One interesting thing I learned through the bowel obstruction is that that are extremely painful! Worse than childbirth. So, there are some blessings with an Alzheimer's brain. In my mom's case her brain is not processing the pain sensation at least when associated with a bowel obstruction. Even with the many URI she has had, no pain. Add pain to three very tough night's in the hospital, it would have been completely unbearable!

Glad you are correct the pain of a bowel obstruction is unbearable. Terminal colon cancer patients when they obstruct if they are not sugical candidates have to be given large doses of morphine and a sedative to get them through. Hope mom is more comfortable at home.

And I have made another discovery. Took mom to a urogynocologist last week because of the recurring UTI's. The doc started her on two new meds, one of them a sample pack of Toviaz. So, in the hospital, because she did not have a prescription for Toviaz yet, they couldn't give it to her. Thought: I wonder if the obstruction was caused by the Toviaz. Googled Toviaz and bowel obstruction, and low and behold, if you have a history of bowel obstruction tell your doctor. Can cause obstruction in either three or six (such a insignificant number) out of 1,000. Will not give her Toviaz tomorrow and I imagine the doc will tell me to stop this medication. And my mom with her history of intestinal problems would be in that group.

My MIL too... does not process the feeling of pain. When she broke her hip and had surgery she had minimal pain.

Oh.. How grateful I am to finding this forum!! I've got so much bottled up inside me, so may I unload and explode some of it here? I'm 43, raising 2 children and caring for my narcissistic ill mother in my home. It's very hard to put aside all the mental and physical abuse I endured growing up and the continuation of the abuse even after I left home as a teen! I joined the military just to get away from them when I turned 18! It's too much to mention here but some of the abuse includes beatings, hunger, neglect... My mother, a drug addict... My father, an alcoholic!! To add to the drama of my life, I just found out several years ago that my father isn't my biological father!! My biological father is now deceased, I never got to meet him. My parents always treated me different than my brother. My dad always would remind me that I didn't belong there when he was drunk. My mother always reminded me how nasty I was. She said I'm a product if rape but when I was a child I never understood why they treated me so different! I cried myself to sleep every single night! At Christmas time growing up I cried the worst! Most of the time I got nothing! I remember on 2 separate Christmas' when I was like 8 and 10 they took me to relatives houses and I had to sit in the floor and watch my cousins open their gifts and my brother got gifts...I got nothing! My heart hurt and I really couldn't understand why! I wasn't allowed to sit with the family in the living room, wasn't allowed to talk, had to sit always in the backseat while my brother in the front, when we went anywhere. Also, the part of my mother being raped? Well that was a lie! She had an affair with that man for over 18 months! There is so much that I need to get out of my mind before it totally consumes me!! This woman is now in my home and has been for over a year now! I'm expected to care for her now but she never wanted me nor cared or loved me! That came from her own mouth! She tried to abort me when she was pregnant with me, she tried to kill me when I was a child! How in the world am I suppose to continue this? She is mean and scream and hollars at me daily! I don't want to take care of her! Really, I don't! She abused drugs for many years, she overdosed is why her lungs failed and put her on life support! She is unable to care for herself, I am home bound 24/7! I have no help... My brother is an addict also and is currently in jail. My dad divorced my mother about 10 years ago and it's left up to me! This doesn't seem fair to me. I read all the comments from people saying it's our obligation to care for our parents because they gave birth to us and blah,blah,blah... But what about those of us that was treated like a dumping pail and was beat and downgraded just for being born? I was the constant reminder of my mothers affair... They treated me like the trash that I supposedly am but now they come wanting, pretending they love me cause they don't have anyone else! By the way... I turned out very successful, never been in jail, not on drugs nor alcohol of any kind! I vowed that I would never, ever be like my parents and absolutely never treat my children, who I love with every ounce of my being, the way I was treated. It bothers me at night when I think about all this and I'm stuck taking care of the woman who has always hated my existence! Having her here and the way she treats me has brought back all those horrific child hood memories that I thought I buried long ago! Well guess I went a little overboard but it feels great to vent! Thanks for letting me!

What's bothering me too is that since she moved in my electric bill has went from $90 a month to $400 a month! She is on oxygen 24/7, air mattress, nebulizer that she uses every half hour ( like she's not suppose to, only every 4 hours) she has to have her tv on 24/7, a computer, and a bi-pap at night, and her light on mostly 24/7! She has to have mostly name brand junk food and name brand cigarettes that cost over 50 bucks a carton! She only draws a litltle over $700 a month social security and she yells at me to get up and do what I'm paid to do!! She acts as if I'm her slave! She's not paying me a diddly squattin' thing! After her share of the utilities and her food and cigarettes and her meds and I've got her darn dog here too to boot that has to have the expensive dog food and treats, there's nothing left to pay me!!! Just needed to vent that little extra frustration! Sorry... But I read on this post if we needed to vent.... I need to vent more but I better try to get some sleep... Thanks to any one who is listening!

Loretta, I'm personally all in favor of letting people vent and just letting it all hang out. Sometimes we don't feel all perky and nice. Some days we feel like crap.

I can feel your frustration from over here. That's a good thing. Better we release that frustration here than strangle the elderly. Really, being treated that way is an outrage. A lot of us have dealt with overly demanding parents. Life suddenly becomes a circus complete with a spooky funhouse.

In a post above, when I came upon the words "bowel obstruction" it took me back 4 years to my husband's death. His cancer had spread to the abdominal wall which rapidly began to thicken causing total bowel obstruction. A surgeon sadly likened his abdomen to "being in a vice......tightening more and more as each hour passed." The whole ordeal was excruciating and pain meds did nothing to help by then. It was staggering to watch my sweet husband in constant agony for another 7 weeks until he died :( I am writing this because my husband had all his faculties and knew what was going on.
He endured - knowing.
It was brutal.
I adored him and I miss him in every corner.
After that experience, I feel like my MIL (dementia) is better off not understanding anything. Yes, dementia is horrible, but we don't watch them being tortured physically. My MIL doesn't even remember my wonderful husband and his suffering. It hurts me that she doesn't even mention him. Maybe she's different than other Alzheimer's patients, but she doesn't seem to grieve at all. Everything is "all about her."
I wish she was gone...........and he was here.
Please understand, I treat her very well but I'm just expressing my deep, hidden painful feelings.
Surely, one of you guys can identify?

@StandingAlone, thanks so much for hearing me... I read your info and seen where your mom passed away this past December, sorry for your loss. You surely was a blessing to your mother for caring for her for over 10 years! It takes Love and a lot of it to do this! Not just patients, care, empathy and all the other good qualities, cause without Love, no-one can do this.... Not without love!! I do love my mother, can't for the life if me understand why but I do! I know it is from God! It's so very hard and when I was at my wits end and threw in the towel saying "I can't do this any more" and tried to get her into a NH, the NH refused to admit her because of her drug problem! The NH had told me they had a female bed available and once the Dr. faxed her medical info to them, that's when they told me that they can't accept her! I'm stuck! She owns 2 acres with a small 38 year old mobile home on it and it's value is something like 15 thousand. My brother and dad has been bickering over it! My brother cussed me out for trying to place her into a NH because he wants her property and he knows that Medicaid will force us to auction it off to pay for her care! He's not helped me one bit!! He doesn't call her nor comes to see her, he only calls when he wants me to bail him out of jail or wants money. This past winter he was homeless and I let him stay here for a few nights and I caught him stealing moms medicine! I booted him out right then! I have Hospice here 3times a week and that's all the help I get! She had an exacerbation a couple of months ago and Hospice said she probably wouldn't make it but a couple of weeks and suggested I go ahead and make arrangements with the funeral home. I did and the funeral director estimated everything about 10 thousand, that included everything... The plot at cemetary, vaught, flowers, headstone, service and everything! Mom doesn't have life insurance nor any savings! I don't have 10 grand, so I was going to sell her little mobile home and 2acres and I got a royal cussing from my brother yet again! He hollars that 10 thousand was too much! I'm her power of attorney and if I wanted I could transfer her little place into my name just to shut him up! But there's a lien on it for almost 4 thousand from the hospital! Mom never paid her medical bills and there was many times her utilities got shut off from not paying! When she was home she would use her check to buy narcotics off the street!! She stayed pilled up and didn't buy food either, she weighed 60 pounds when she was admitted into the hospital! Since she's been with me, she has gained up to 110 pounds! Hospice says they will probably discharge her when it's time for recert. When that happens then I will be totally alone with no help at all. She hollars for medicine every two hours! She'll scream and beat on the walls non stop wanting that high that she has been use to for so many years! Her medicine is scheduled for every 4 hours as needed up to 4 times a day! She wants it every 2 hours, day and night! She woke me up at 2:00 this morning! Again at 4 and again at 8!! Never any rest for me. My eyes look like Raccoon eyes! The only way I could get her to be quiet was to tell her if she screams at me over that medicine one more time that I'm going to flush every bit of it into the toilet!! That worked, she is being quiet but blaring her television! Back to the NH subject, I think that's discrimination to refuse to accept her because of her past drug abuse. It's been over a year since she overdosed. I guess they don't want to be bothered with her behavior! She still has the addict mind, constantly wanting her high!

Maria, we do understand. I sometimes wished that it was the other parent who died when he is being so stubborn and very self-centered. I see from the different discussions that as the person progresses in the dementia, they become more and more self-centered. I'm sooo sorry that your husband had such an excruciating death. I had a friend who had brain cancer. Her head kept swelling and she was screaming in pain...begging for help from the pain. I'm so sorry that you had to go through this with your husband. {{HUGS}}

Loretta, maybe I am being harsh, but Theres only so much a person can put up with. You have done all you can.... your mother qualifies for medicaid and probably many other services. I am all for trying to take care of relative at home, but in this situation its time to have her moved to a facility who can better care for her. She is doing nothing to try and help her situation by continuing to smoke. You have every right to take care of yourself and this is a train wreck waiting to happen.

Smoking? I would think that if it provides comfort, quitting now is not going to prolong a life. I've actually thought I would much rather die from lung cancer or another illness caused by smoking than the wretched disease of Alzheimer's!

Loretta -you have every right to have her placed in a nursing home-call Social Services in you locality and tell them what you have told us and just the fact she smokes and uses oxygen s reason to have her leave your home and the fact she still abuses you is another reason you do not owe her your heart and soul -you do not deserve to be treated this way at all-please pick up the phone and have her removed immediately even if it is too a hospital ER first and then into a nursing facility-you should not have to car one more hour to that nasty ungrateful person-let us know how things proceed-I hope you have a husband who supports you in this matter or someone who cares about you enough to help you.

195Austin... Its exactly what I was thinking.... smoking and oxygen tanks! Once we had a patient admitted to ICU.... drug addict....needed enormous care to save his life....he ended up having both legs amputated above the knees. He was eventually transferred to another floor. I came into work and found him out in hospital parking lot. He had snuck outside in his wheelchair, oxygen tank and all smoking. Was waiting for him to go up! Was so glad when he was discharged! I feel bad for you Loretta, because your mom needs care not even sure a nursing home could provide and you are doing this..... Bless you!

Thanks Austin and norestforweary for your comments, I have her on a waiting list to 4 surrounding facilities... I think they are being like the last NH and not wanting her in their facilities because of her behavior. After she caught the recliner on fire I made her quiet smoking, she wore the nicotine patches and had stopped smoking for a few months until one of the Hospice nurses gave her permission to smoke again, telling her that she didn't see what it would hurt if she smoked! I told the nurse that what it would hurt is my kids safety if she catches the house on fire and all these oxygen tanks we have here could blow up our subdivision! So instead of arguing with my mom and the nurses, I let her smoke but she has to take the nasal cannula off her face before smoking and she puts it back on when she is done. I have a husband but we are separated, it's only my daughter and son here to help. My son told me a few nights ago that he doesn't want me sleeping in the living room beside his Grannies room because he's afraid she'll do something to me while I'm sleeping! I don't sleep in my bedroom because I can't hear anything back there so I sleep in the living room on the couch. After he told me that, then I started looking at this situation from their perspective. That's when I called all the other surrounding nursing homes to have her placed. I want my children to feel safe in their own home. I'm crossing my fingers in hopes one of them will call and say they will take her. When they call I will surely be putting the pedal to the medal burning rubber to get her there before they can change their mind. I guess I kept her here this long is because I'm waiting on her and giving her a chance to tell me that she loves me. Something, anything to let me know that I wasn't the reason her life was screwed up. I keep replaying in my mind the night they put mom on life support, she could barely speak and couldn't move or anything but just before she went out she rose her hand to my brother and whispered that she loved him and said that she loved him so much. I was sitting there beside him but she wouldn't look at me. That was her last words before she was placed on the ventilator because she quit breathing. My brothers words to her wasn't that he loved her too, instead, all he told her was "I know"!!! I had went to a therapist a couple of years ago and of course I opened up to her and told her in great detail of all the abuse and all about my wacky family,she suggested I move far away from them all! I think I'm ok with it now, I've accepted that none of them give a rats but about me and all they want from me is to do the dirty work so they will end up with her car and the 2 little acres that she has, well there's going to be a news flash for all of them.... She's going to a NH and her 2 little acres is going to help pay for it!