I am on only child, caring long distance for my Mom. Her health went from bad to worse in 2010 after she called me experiencing what turned out to be a brain hemorrhage. I traveled to be with her and care for her for 3 months. She ended up back in the hospital two weeks after I left. Evenutally this led to her being placed into a nursing home. Initially we were set up for assisted living and she backed out at the last minute. There are no friends or relatives to help. She cannot travel across the country. I am unwilling to give up my home and move to be closer to her. I do not travel well myself. I call her every day or so and each day the conversation is the same.She says she wants to get out of there, she hates the people there, the food is awful, she will not let anyone touch her and she wants a place by herself. She has always been somewhat reclusive and because she feels so poorly, I know she is very emabrrassed about how she looks and feels.
I have hired an elder care nurse who is wonderful and sees Mom every two weeks. Her regular doctor felt a nursing home was the best option for her, because she wouldn't let anyone in her home to assist her with anything. She didn't even want me there and had a psychotic break over me being with her. She does appreciate some of the things I have done, but this is not how she pictured her life in her old age. She feels she has been stripped of her life and I have to admit that is probably true.
She is 91, suffers with dementia, behavioral dilusions, develops blood clots (has a vena cava filter to prevent problems), has really bad osteoarthritis and has short term memory issue as well as aphasia. Now she has not let anyone touch her for over a year, and her toenails are so bad, they are grotesque. She has anxiety and depression and paranoia (getting meds for this). They finally got her into the beauty shop to cut her hair and she was very upset that they "violated" her in that way.
She will interact with her roommate and others and she seems to save her worst moods for me. Guess she feels comfortable with me.
Today, was like most. She just wants to die because she is so miserable and she hung up on me. I have talked to the social worker, her elder care nurse, and friends. I wish I could make all her wishes come true, but I cannot in good conscience give her what she wants, which is her freedom and the control she used to have. I am at a loss and feeling overwhelmed and sad. Now I have total control over her finances and all the other things I should have.
Back to my original question.....am I doing enough and if I am not, who will tell me?
Thanks for listening.
What Ive tried to do is tell myself I'm taking care of another human being, not my mother, because the baggage and manipulation my mother offers makes me so angry I want to abandon it all. This helps day to day.
Can you give us an update on what is happening. Blessings to you. Cattails
I can't forget however, that when she was living along, she complained about the neighbors or anyone who turned around in her driveway and made black marks with their tires, or the times she called me in the middle of the night frightened that she was sick. And of course lets not forget the many times she misplaced important items and she struggled to find them. Also when she was still driving, she would get lost and a shopping trip exhausted her for days. She has forgotten all that.
I do believe, she is the best place possible. The staff love her and her sense of humor. She is still stubborn and won't let anyone touch her. I know this is not a perfect solution, but the only one I can manage right now. I send her pictures of the great-grand kids she will never meet and tell her stories about them and reminise about the past when she is having a good day. Elizabeth, when you said that distance doesn't change the guilt much. I must agree. When I spent several months with Mom, she didn't improve all that much and she actually asked me to leave on repeated occasions until she finally threw a fit which led to my leaving her alone (I consulted with her doctor before doing that). That is whole other story. Thanks for caring and hugs to all. Just visited my daughter and grandbaby in Seattle (3 hr car ride). They are breath of fresh air.
But, all you can do is think, pray, and make the best decisions out of love in your heart and perspective for the big picture. You wil not make Mom over into a happy person if she never was, and she will never be happy with accepting that the best part of her life is over (let's face it, aging and infirmity sucks) and she might or might not be able to let you make her life a whole lot better. If what she's got is nothing but misery, you might not make it any worse by taking a chance on moving her as long as her medical people think she could handle the trip. You might be able to do a few more things that would make her more comfortable or a tad bit happier that way. OR, it might be very clear that moving her would only make a bad situation worse after you think it through and collect a variety of perspectives from others you might trust.
Few people would have the nerve to tell you "if you aren't doing enough" except maybe someone who took their loved one home and really feels that anyone using a care facility is just wrong...met someone like that on here, and it wasn't pretty, even though the person was actually writing about how awful their own situation was to start with!
Hind sight being 20/20, I should have somehow convinced Mom to move close to me back in 2006, after Dad passed away. She was in reasonable health then.....but I didn't and in 2008, when I tried to convince her to move, she flattly refused to think about it. At that time we discussed assisted living, but she was quite snug in her little home and doing pretty good, still driving, and taking care of herself. I did notice the onset of dementia at that time but she was stubborn and managing.
Two years after that, after two brain hemorrhages, she can't drive, and it left her with speech problems and almost no short term memory. The doctor she was seeing at that time and every doctor subsequent has the feeling that traveling over 3,000 miles by any mode of transportation would be difficult, if not impossibsle. She gets blood clots quite easily (she has a vena cava filter in her chest to catch these, hopefully), she has high BP, won't let any near her to examine her or even trim her toenails. She says her heart is bad....but as far as I can tell, she is not being treated for heart disease except for the BP meds. She is on two depression/anxiety medications which levels her moods a bit.
I have this fear that, if the doctors said, Yes, she can travel and I can manage to somehow get her out of the NH she is in, she would decide at the last minute to back out and pitch a fit. She did this after we had everything signed and ready for her to move into an assisted living complex. She found a way to back out by going into a deep, dark funk. She wouldn't talk to me and her personality took a wierd turn. I know it was fear driven. I let her back out and left her to fend for herself. That only lasted a couple of weeks and she was back in the hospital and subsequently moved to a NH.
I'm not getting any younger, which everyone on this site can relate too. I am in constant pain from arthritis and have a husband that needs my attention. I don't like to fly either. Mom chose her life a long time ago, and yes, I think I would feel better if she was closer. I am coming to terms with all of this, but it is on my mind 24/7. I pray a lot.
Quite honestly, in a perfect world I would love her close to me, cause I feel I have no control over her care. I tried to set up the best care for her, but it is not what she wants.
Mom got me to take her to the emergency room for a second opinion on Monday night and i think it was a wake up call that she worries when she does not feel right and I am not focused on her. But I have other things to do and think about.
It is extremely painful, but I have had to realize, nothing I try will change her. If she got well, she would at least bathe, but the verbal denigratition would continue. It may be wrong, but knowing the gravity of her health situation, I pray one night soon she slips away where she can find peace....
I can't blame her for feeling the way she feels and always agree with her. I have tried unsuccessfully to point out that living independently is not an option. Unsafe to due to fall risk and forgetfulness, etc., not to mention the possibility of hurricanes or problems with people trying to scam her. She doesn't and can't get "IT" due to the dementia. It makes me sick and sad. I also pray that she will pass from this life into the next, not for me, but for her. She seems so miserable in this life but her body has not yet given up the big fight. I sometimes question GOD and ask why and what are you expecting of both of us.
Interestingly, my MIL at the age of 94 began to slip away physically with heart failure and colon cancer. She was very much aware of her situation. She was living independently and didn't like her physical decline. When it came time to make a determination about how her life was going, she had the where-with-all to say to herself and those around her, that's it, I'm outa here. She was gone in three plus days. My Mom on the other hand, doesn't have the mental capacity due to dementia to determine her own fate. I try and tell her it is God's plan and will, only He can determine when it is time for her to die....She doesn't or can't get it. I pray for her daily and hope that she is not hanging on in hopes that somehow, she will have a place to call her own. I would never agree to that arrangement knowing her physical and mental issues.
If she ever got her wish, she would find somehow to end her own life. Tragic and true. As her only child and with no other help I continue to talk to her frequently. I sure didn't picture our lives like this. Makes me want to make sure my kids don't have to feel this enormous pain. Enought already. Hope all those reading these posts fine some comfort and peace.
I too am an only child so i do know that you feel all the responsibility for her but just know that whether you were close to her in distance or not you can't change what is ahppening to her.
The problem is that Mom has returned to her former self, with few, if any, symptoms of memory loss. The aids said that she is the highest functioning resident; one aid told me confidentially, that she does not belong here with the others. After much research and conversing with her family physician and psychiatrist (who said that with proper home-health care, she would be a good candidate for returning to her home), we are considering a trial basis for her at home. We are in the pre-arrangement process, conversing with social services and at-home care services, and her medical team, before we actually make the decision.
My question is, everyone we talk with (mostly friends and relatives) discourage us from transferring Mom from assisted living to home). I am a 66 year old, single woman, and working on my phd. in psychology; I want to hire in-home health providers, while still caring for her part-time at her home. The main reason for wanting to do this is because my mom is so depressed living at assisted living. She is so highly functioning that my sister and I do not think that this is a good fit for her. I am a mature, well-thinking analytical person who is trying to do what is best for Mom, and not for myself. She is on mild anti-depressants and anti-anxiety medication, although is still showing signs of depression. Caregivers, what do you think? Thank you for your comments and responses.
It may be that this AL isn't the right "fit" for your mom (yep agree with you on that totally). I've shopped IL AL and NH and been through various for both my mom and my late MIL and none are the same. My MIL's first "NH" was such that she was in her own room with shared bath that opened onto a central outdoor courtyard - it was pretty fabulous imho - but she hated it. Activities there were what the residents made it and no effort really made if they didn't participate after overture's were made. My MIL was a most difficult person and aging just made her even more so, which seems to happen for all. MIL was never gonna be happy so really trying to make that happen or finding the right NH was a waste of time. Now my mom went from her home to IL and now in a NH for a couple of years. She is mid 90's too. Her IL was a good fit for her but she eventually got to the point of not being able to manage her meds (bringing about the what would have been manageable paranoia) or eat/drink properly (again this related to not taking her medications) so she went into NH. The first NH wasn't a good fit for her in that she is arts & crafts type and there were no real activities even though they touted that and also for me as they were waaaay too disorganized in their business office or in followup on her care plan and I suspect extreme overbilling to insurance. Her gerontology group disassociated from this NH and I moved her to a new NH where they are medical directors and this NH is really a good fit for my mom. She is ambulatory with a walker. Now her new NH is built on an "x" design with a deep central hub nurses station that looks 360. So it's easy for staff to track residents. My mom is on the ambulatory fall risk wing (they wear neon bracelets that state this). Her old NH was a long corridor with an inset nurses station so they couldn't "see" the residents unless they made an effort and there was no grouping of fall risk from the bed bound residents, etc. My mom is the type to get up and shuffle out of her room to the nurses station and hang and this NH has chairs and open spaces for them to easily mill about with space. there are ladies who park themselves in the same space every day and become the gossip girls, too funny. Also I've found how they handle bathing makes a huge difference - my mom's NH has a 3 person bathing team and the shower is a central in each wing (think old school gym). She is just so much cleaner at this NH than the old one which was a 1 person system in their shared shower. The day nurse told me that the 3 person team is what they do as it provides for enough distraction for the resident especially for those ladies who have issues with private parts - I never thought about it from that perspective as I'm a child of the disco era.
How has your mom been assessed for dementia? My mom saw her old family internist and he was on the ALz drug system and also on prescribing a new med to deal with whatever her complaint was. That is kinda what medical education is about - complaint / analyze / prescribe / cure. For dementia that doesn't work. My mom tore her rotor cuff and in order for ortho to do surgery, she had to be evaluated by the geronotology group at the medical school as orthro was faculty. On retrospect this was a godsend in getting her good health care - she went through surgery fine (at 89) and the gerontolgist did a full evaluation: Folstein & MOST dementia tests, brain scans, psyc eval, etc. It was determined that she had Lewy Body Dementia rather than Alz or vascular. They weaned her off her meds and just onto 2 meds - Exelon pill and Remeron. About coffee tablefull of meds got thrown out. Huge butt difference in her cognitive ability.
LBD is such that they are highly functioning to the end. For my mom, she has episodes which I think are related to a plaque release in her brain (the Lewy Body)
and she will have paranoia or hallucination then accompanied by a visual change with dizziness and usually a fall. It's important to know if it's LBD as most of the depression & psyc meds are incompatible for Lewy and cause big problems.
So ask about how your mom's dementia type was evaluated. Good luck.
Thank you both for responding to my blog regarding my mom. I find it comforting to be corresponding with caregivers who have been through it all!
To answer your question about how my mom's vascular dementia was evaluated--she was examined by a physican who specializes in diagnosing dementia. We are getting a second opinion by a neurologist who specializes in vascular dementia, just to be sure. The physcian told us (after she had an MRI) that she "may" have vascular dementia; and that although there were no changes in her brain, two older infarcts were detected in her brain stem.
The problem that we are having is that she does not display any of the symptoms that patients with dementia/vascular dementia usually reveal. Perhaps that is because she could be in the early stages; that is the reason we are opting for a second opinion. It is really frustrating when you are not confident that your loved one has the correct diagnosis.
From the plethora of research that I have read (including peer-reviewed journal articles), it is sometimes difficult to differentiate between what is dementia and an age-related cognitive disorder, particularly when they are over 80, and when they are diagnosed with depression and anxiety (as in the case of my mom). I could go on and on, although I think you get the picture. What I will say, is that my heart goes out to the patients, their families, caregivers, and health providers who are all affected with this incidious disease.
Thank you for this website, a safe place for us caregivers to vent, communicate, and express, not only our fears and misgivings, but also our hopes and dreams. God bless us all!
I have paid no less that six thousand dollars to keep this dog alive for her. My in home care bill for her this year alone is sixty five thousand dollars for full time care We have gone through nine care givers. Granted some of them are not her falt . But here are some of the reason. They steal all of her things,, They are wearing her clothes, They are to fat and eat all of her food. They do not speak good english.
The are ugly. The dog doesn't like them , They do not know how to cook, They move all of her things & go though her stuff. and how much she loves him and if she finds out that I am with my kids she get mad and will not speak to me and throws a fit crying and yelling at me. She keep a calander for a wile keeping track at how much time I spent with her compared to what I spent with my own family. We also have my Mother in Law who hates everyone and yells and tells us that she is miserable but will not do anything to help her self. They other day I took her Mexican food for lunch and she slammed the fork down and said why do you always bring me Mexican food. I 've taken groceries to her house , came back a couple days later and she threw them all away because she dosen't want them in her Ref. We pay everything for our parents. Their homes utilities food , medication what ever they need. As long as it is the best you can do. It is enough. God bless you for caring.
Thanks for all your posts......they are helping me cope.
The best I can do is try to keep myself busy, active, and as healthy as possible. I never want to be miserable, or make my husband and kids miserable, nor put the responsibilty on my kids that she has placed on me. i can relate to all of you. I wish we could fix things, but we can't. Each of us will have to make that final destination on our own. There are lessons to learn from our parents and sometimes it is how NOT to live. My mother was a recluse, only wanted just her family and mostly me who has beared the burden for most of my life. It's a wonder that I still have a husband after all these years. It should be a stressful week ahead, especially if she is psychotic after this episode. Her brain is traumatized from the dementia and also the stroke. As my preacher reminds me, God's grace is sufficient, so praying for all of us caregivers for God's peace that passes all understanding. We all need it.
My mom and I did everything we could to keep her home. This week we moved mom to a board and care for dementia patients. I am so relieved. I feel like a zombie. I had no idea I had become this tired.