Witnessing my Mother's deteriorating condition is very painful. Any advice on how to get through this?

If your mother won't listen to you, can you think of somebody she might listen to? I respect your respect for her autonomy, but if you're noticing an accelerated decline then I agree with you that she needs a thorough medical review, and not just a hasty once over from what sounds like rather a complacent GP. The falls especially are a serious risk and her doctor ought to be taking them more seriously. Any allies you can think of? Somebody who can play Bad Cop for you?

Blackpine, does your mother have a medical alert pendant? If not, it's a good idea. Changes in position signal a potential fall and activate the alert response from the provider of the pendant. I got one through Guardian Alarm; the service is excellent and they're very prompt and thorough about follow-up if the pendant alerts as to a possible fall.

There may come a time when you need to be more aggressive about getting help for your mother so she isn't alone. Having said that, I'm still trying to do that for my father and he's 96.

You've touched on an issue that for me as yet doesn't have a good solution. It is painful to see someone deteriorating. It's easy to feel guilty for being healthy, but that's not a realistic or healthy attitude.

Sometimes I try to think of things that might be relaxing or cheerful, just kind of a "stroll in the park", with nothing on the agenda except just being together. I can usually keep my composure until I'm alone, then I let the tears flow if it helps to provide some emotional relief.

Perhaps the way to make these visits more positive is to remember that each walk is more time you can spend together, and be thankful for that. And enjoy each as if it might be the last. That's not intended to be maudlin, but just to live for the moment.

It's hard to watch a parent decline that's for sure. But on the other hand, your mom has lived a very long life compared to a lot of the population and she's been able to do it on her own and on her own terms. In some ways, there's nothing better than that! She knows you're there to help her if she chooses that path, so she's independent and loved. So I'd say respect her wishes (as long as she's still got most of her mental faculties) and know that she's living life on HER terms. Not a lot of people get to do that!

My dad lived to 92 and made a lot of choices I wouldn't have, but he lived life the way he wanted to and went out without pain and struggle. That's about the most any of us can hope for in this life! So celebrate the positives in your mom's life instead of focusing on the negatives of what you want for her. Look at what she wants for herself.

I live with my Mom, and I see her pain and her decline and her struggles on a daily basis. Right now I'm struggling with something she said to me. She said, "I think I'm dying and it's just taking longer than it should". At this point, I do believe she would welcome it. Her quality of life is not great, although we do as much as we can to improve it. What I struggle with is this: How much should I be doing to prolong her life if her life is miserable? I have made it my mission to give her vitamins, make sure her cholesterol is in healthy levels, all those things we do to make sure our loved ones live as long as possible. Mom takes 18 pills/day, including vitamins to regulate every facet of her system. I give them to her like clockwork, 4x/day. If I got rid of the vitamins and the pills that caused unpleasant side effects but did nothing to make her feel better, I'll bet I could get rid of 10 of those pills and she'd have a better quality of life. Any thoughts? Btw, I wouldn't be taking away anything that would kill her if she didn't have it. She's actually in pretty good health, according to the doctors. She just doesn't feel like it.

Equillot I struggle with the same dilemma. My mom says 10X a week she's ready to go. She's not in any pain, but her life is pretty solitary (by her own choosing) and all of her siblings and most of her friends are gone. I'm the only person who sees her on a regular basis. I take great care of her and wonder sometimes why I work so hard to keep her going...I wind up believing we don't know when it's someone's time to go, so I'm just going to keep her in the best shape for as long as I can so that she can remain as independent as possible (which she wants). It's not an easy question...

Equillot, one possible approach to your question of how much you should do to prolong your mother's life if she's miserable is to think how much you'll question your actions and be plagued with self doubt if you don't take all the measures you're taking now. I still have those doubts about my sister and mother.

To you and to Blannie: I was once advised by someone who had no legitimate right to feel he could give me advice. He told me I shouldn't "drag" my father all around to doctors trying to take care of and/or heal everything as my father had lived a good life and I should just "let things be."

It's a good thing he told me this over the phone because the look on my face would have made it clear I felt his response was not only inappropriate, it was insensitive and stupid.

I don't recall what conditions your mothers had, but if either were in a terminal situation as diagnosed by one of their doctors, then I would think your speculation would be appropriate and it would be reasonable to stop heroic actions.

GA - My Mom doesn't have any terminal illness, what she has is chronic pain. She had 2 back surgeries (failed) with a 4 level fusion and the resulting arthritis, she's had a broken hip, bad osteoporosis, she's had so many procedures on her back to try to control the pain, all the way up to implanting a spinal cord stimulator (which worked pretty well for a couple of years). She takes percocet and oxycontin to help control it, but on a typical day, her pain will range from 3 or 4 to 8, and when the pain gets bad, she has to take a xanax for the anxiety that goes with it. The pain meds never do more than take the edge off anymore, even with the heavy duty stuff she gets. She is on heart medications, but according to her doctor, since her bypass, she's grown new natural arteries and her heart is strong and good. The statin drugs that they started her on again 6 weeks ago have made her go downhill again rapidly. Mind is going, pain in joints and muscles and general weakness. I took her off of them yesterday. At 84, she can have high cholesterol. I'll change her diet and put her on fish oil and niacinamide. I think a great deal of her problems, the ones that make her think she is dying, are coming from the statins. I took her off them once before after talking with her doctor. He put her on another one after 3 months. No more statins for her. I don't think statins are heroic. I took myself off them as well. I will definitely keep her on her anti-seizure medication, on her pain medication, on her long acting nitro. Those seem to actually help her. Her Vitamin D helps her as well with her mood. Her calcium helps with the osteoporosis so I'll keep giving her that - don't want her breaking bones, but I may quit giving her the daily vitamin and the water pill - she tends to get dehydrated. They prescribed that when she was having trouble with a little swelling. She doesn't need it all the time. The doctor took her off her blood pressure medication when he put her on the statin. Technically she could go back on it now, but her blood pressure has been fine. 125/75. It ran a little low when she was on it. I think keeping her off that, too would be fine. I know I sound like I'm second guessing the docs, and maybe I am, but each medication has a side effect, they all have interactions, and the fewer medications the better. I am NOT trying to kill my Mom. I am trying to improve the quality of her life. Right now she doesn't like her life. She has always been one who loved her life. I want to give her the chance to enjoy it again. If that meant that she would live, say 3 fairly enjoyable years instead of 5 miserable years, I think that would be a good trade off.

Hi blackpine ~ we each, in our own way, see similar reflections for our own parent/s or spouses, in the mirrored description of your mother's condition. Please don't wait for the ambulance to tell you what measures are necessary i.e., the drastic/irreversible event - the fall and breakage of a hip, to take more proactive measures to tend to your mother. Can you say, "Mom ~ i love you and i want you with me for a long time: i really enjoy your company and learn so much from you ... we're going to go see my doctor [or one your doctor recommends] and get a fresh set of caring eyes. i'm concerned ~ just like you are always concerned about my welfare." Meanwhile, give the doctor a "heads-up" into what your observations are. She's falling way too much. She may need to have a walker for use in her home. How's her eyesight? She may be misjudging her distance from objects - even a step, or a cupboard. Perhaps she was trying to reach, and without regular exercise, the muscles do tend to atrophy. They lose their elasticity. Is her appetite good [check her fridge - as though you were looking for leftovers to nibble on]. My mom drinks Ensure - but doesn't 'do food' much anymore, other than puddings. [The puddings i make, i add protein powder into them, and the powder is tasteless, and not granular at all.] You may need to step outside your comfort zone, toss her into the car, and drive her to the doctor. Stay with her during the appointment. Doctors get frustrated when patients don't answer the questions. That could be the problem she recently encountered - they get awfully tired of the coyness of the elderly, or the evasive charm (show-boating) that is used to divert them from their questions regarding their symptoms. But we see doctors because there's a problem -- so we have to provide the clues so they can understand the problem, and rule out different diagnoses. That, dear one, is the best you can do for ~and with~ your mom. i love it that you take walks with your mom ... the togetherness sounds so lovely. (There's a booklet out called "Love is spelled T-I-M-E and i think there's a lot of truth/wisdom in that.) She's obviously not taking care of herself, and is not capable of making a proper decision. Even with the Guardian Alarm [thanks for the suggestion, GardenArtist ~ i'll be looking into that one, too], it doesn't address the why's behind the changes you're observing. Mom went from 142lbs to 110 within 2 months: my mom and my sister were horrifically upset when i made an appointment with mom's doctor and told her when we had to be there. She wouldn't call. My sister harrumphed it off. Turned out she had 4 gallstones each about the size of a silver dollar, and her gall bladder had to be removed. It took a year to get her weight back up, but her muscle tone was kerplyupy - lost - kaput. Balance trouble, wouldn't exercise and when i took her out [instead of her staying home] she whined to stay in the car, regardless of the heat or the cold. i refused to let her sit in the car if it were over 70 deg., or under 30 deg. Even then, i could only grocery shop for 1/2 hour at the most, making it a wasted trip, i'd have to repeat it in another day or two. So, i then just let her sit on the bench in the grocery store, while i shopped. She loved it - she started talking to anyone who passed her by. She's a people person ~ so it gave her the socialization she craved without really knowing it.

Are there stairs? Throw rugs? Perhaps she needs grab bars in the shower, and a shower chair, if she's falling so frequently. i'd be a nervous cat, thinking that mom would be in the shower, risking a fall. i live with mom. No, showers aren't pleasant, but i'm having hers remodeled in 2 days, to make it safe for her to shower. She doesn't want to even sponge-bathe. She, too, is 88, and there's a very strong cognitive change in her thought processes: she's forgetful, ruminates, and is scheduled to have an evaluation of dementia vs alzheimer's soon. The change sneaks up, and by the time it is noticeable enough to tell someone else, it seems to really change fast. In Dec., a nurse wrote down that she 'ruminates': now, 7 months later, i'm answering the same question at least 10 times: then, she asks again an hour later. Why is it so hard for me to understand, that to her, it's the first time she's asked it, and she forgets she's asked it just a minute ago? The hard part is watching them lose interest in doing the things they used to love doing ~ even watering a plant. She, too, is 88 ~ but for a few years, she's told people she's in her 90s. But the year is 1973, and JFK is president.

i wish you faith, hope, strength and sense of humor [those imho, are golden nuggets of self-preservation!], to literally plop her into the car, and take her to lunch and then to the doctor, or doctor first and then lunch. Give the doctor's office a head's up - so they know what the situation is/your concerns are, which will enable them to gently yet effectively pursue the proper line of questioning, attitude, or exam. They will allow their scheduling to accommodate the type of exam ["extended"] to get to her history, etc. Perhaps her insurance company can even recommend a doctor specializing in geriatric medicine.

God bless ~ sending hugs, prayers and please let us know how you're doing. Namaste ~

What compassionate and thoughtful responses you've all given me. Thank you. I'll give your suggestions a try. Going through something painful and scary like this, it's easy to feel isolated. I no longer feel so alone.

I agree with most of the responses already given, and would just add that even with a pendant, whether they are at home OR in a facility, the seniors will still fall. There is only so much we can do--so don't feel like a failure if she falls, and don't let the popular TV ad "help I've fallen....." don't let that make you feel inadequate! Likewise, don't feel like if you HAVE a pendant, that solves everything (I had a sister insist on the most expensive pendant available. ...and now I realize, it was her way of washing her hands of any responsibility to her mother). The Big Picture with seniors is, YES they are nearing the end of Life, and we have to support them at this time. Pendants only beep. People are the key, and it sounds like you're doing a wonderful job, please take care of yourself too.

Equillot, I assume you're aware of the side effects from statin? I'm glad you took your mother off them.

I wasn't aware that new arteries could be grown. That's some good news though!

Whether you're second guessing the doctors or not, from what I read you're following a good course based on your own judgment. I've refused medications from doctors for both myself and my father - one reason I rarely go to doctors because unless I find a really good one with sense of balance on medications, the first thing some of them do is whip out their prescription pad.

I have read negative comments about niacin though; I don't recall offhand what the issue was but do recall that after reading the cautions I decided not to even try it. Red yeast rice has been effective for controlling cholesterol, but I've also read that there are side effects that need monitoring. And doctors I think generally prefer to prescribe statins even if they can be harmful.

Since you're so familiar with nonmedicine therapies, I'm wondering if you've tried any aromatherapy, music or art therapy for your mother's pain. Lavender and cinnamon are relaxing; the aroma of cinnamon in a cake or cookies is even more relaxing (as is thinking about all that good food!).

I used to get herbal heating pads with a mixture of spices and herbs. The aromas were just as therapeutic as the heat.

In SE Michigan, some hospitals have begun to hold mindfulness courses - training the mind with relaxation techniques. When my sister was dying, she found comfort from a Reiki practitioner.

Blackpine, the comments on aromatherapy may help you relax after a walk with your mother. And even though it's difficult to see her in decline, those walks aren't just therapeutic because of the weight-bearing effect on bone structure, they're therapeutic because you're outside in the natural environment. A Nature Deficit Disorder has been identified to describe problems arising basically from too little contact with nature.

Hi Crickett33, thank you for your words. I've been thinking about what you said about how hard it is to see the person you love lose interest in those things they used to love doing, like watering plants. It's so true. That's a very hard part of all of this, isn't it. My mom has always been a great reader and gave me a love of reading. When I asked her about the kerfuffle surrounding the new Harper Lee book, she didn't recall what "To Kill a Mockingbird" was about. A small thing, but somehow very poignant for me.

Thank you for writing.

Blackpine, perhaps you could try books on tape for your mother. It's easier to listen than to read.

I'm happy that you don't feel so alone, Blackpine. That's what the agingcare community is about. Most of us have witnessed these declines and the solutions -if there are any - are different for everyone. However, by sharing our stories, our ideas and our compassion we help each other and hope to help you.

My parents both had long slow declines. The pain of watching is awful. We do what we can. Sometimes that means changing their environments, but other times we simply must leave them live their lives as they choose. Unless they are cognitively impaired, I believe that they have a right to choose.

The idea of an alert of some type would be good if she'd wear it. That was the only concession my independent neighbor would make. I visited him daily (he was completely deaf so I couldn't call). He would have died if he'd been forced to give up his old home. Yes, his last fall was the end of him, or rather the move to a nursing home (an excellent one, by the way) was. He only lasted six weeks then. But he'd had a good 88 years. I wouldn't, as his primary caregiver, have tried to make him do anything other than what he did.

Keep visiting your mother. Know that your pain is normal and please keep us updated. We do, truly, know what you are feeling.
Carol

PS - I believe that your husband is right. When something dramatic happens you'll know what to do. Likely that will be a fall. Falls put both my mother and my neighbor in a nursing home. My mother survived 7 years - my neighbor 6 weeks. I believe that he gave up and let himself go.

I beliieve your husbands comment is great also. My mom lived alone till 91, when we realized her mind was not good. she will be 97 next month, healthy, but has pretty bad dementia. she has had quite a few falls, but never breaks anything. she lives in assisted living and I visit her everyday, for less time now because it is hard to even carry on a conversation. watching a slow decline is really difficult, but I do use God, family, friends and essential oil to calm and sleep(for her and me!).

Dear Blackpine - I know your mom refused to change doctors, but if you don't think she's getting adequate care, I think a fib may be acceptable. Find a Geriatric Specialist with good yelps and tell mom her PCP retired. Then get her in to the new doc. A swollen face could also indicate possible dental issues.

Forgetfulness? Falling? It doesn't sound as though she should be living alone.

Blackpine, I understand. My Mom is a bit younger than yours. Its been really hard to see the physical and mental changes in her over the last few years.

After a fall ( which after coming up with some story on what happened, she finally admitted she had no idea why she fell), she had tests done that showed she had many mini-strokes. That's been a few years ago, and over that time, she's changed to relying constantly on a walker, she remembers most people & long term info ( short term not good) but will have a hard time if she goes out on a visit away from home ( the last visit here with us, she forgot that she had a house to go back to - she's not on her own, my Dad is still healthy enough to be her main caregiver for the moment). She's aware that she has a problem. Stress makes it worse, so we try to minimize that.

Grieving is a good term for it - it is like I'm grieving over the Mom I had, that I'm losing. Anyway, I know this isn't exactly what you're going through, but what's helped me is enjoying the good moments, not focusing on what she can't do, but what she can still do. I found the book, Creating Moments of Joy to be helpful also. Like crickett33 said, a sense of humor helps! Forums like these help - everyone has a lot of good advice.

Try to keep in mind that while it's hard for us to see this change, it's scary for them too and hard to accept that they need help.

Hope this helps - hugs!!

Carol, thanks for raising the issue of elder decline in nursing homes. I think there are some elders who can survive and thrive, and others for whom independence is such a primary component of their personalities that they just give up. That loss of independence and physical decline is just too much for them to cope with.

My mom is now in an Assisted Living center and I hate to see her there but I think of when she was in her apartment by herself and she was always so tired and couldn't keep up with laundry, dishes, cooking, house cleaning and see her now not having to do that she is much better off. And the number of falls has decreased dramatically. I no longer have to remind her to take her pills every day. And then wonder which ones did she not take. I cry went I go see her because my mom as I have known her is disappearing. Slowly but she is going away. She doesn't remember where she is at sometimes. Like she told me the other day I didn't live here in June. Well she has been there since February. So her memory is going. But she declares that the doctor said I didn't have a seizure, well that is not quite what he said mom. He said he could see signs of it and signs of the dementia and that it was normal for a woman that is 86 years old. She only can remember what she wants to. And then only some of the time. But it still hurts that she doesn't remember things from the past or what we did a year before on her Birthday. The little things get to me all the time. I try to be strong every time I go see her and talk to her just like I always did before but she won't remember the next time I visit. So I'm just working through accepting that she is going to decline a little bit each time. I took care of her mother in her later years and she did not have the decline like my mother has. But I also know why she didn't. And my mom is hmy grandmothers daughter and from the same family but my mom lived a hard life and my Grandmother was very easy going and loving in every way and believe in God and felt that God knew best on how thing were to be handled. My mother has made some bad choices in her life. That have affected her health over all. and because of that she is having these problems now. Alcohol problem loom around a lot of problems in a persons health. And people don't understand the affects it has long term on a person. It seems just fine at first and then it starts to take over. And your health is one of the last places we think it will really hurt us but I have seen it so many times now that it is really a bad thing to get into. I saw my father pass very quickly after a stroke I was there for him in the last few weeks of his life and saw the effects it had on him. And now I see the same effects on my mother. And it makes me think that I don't want that to happen to me. I only have my husband thank goodness and we have taken care of our things for the future so we both are clear on what the last years of our lives to be like. How do you deal with them getting old and disappearing? Well Do what you can while they are alive and cry your tears on your own someplace away from them and it is just like a death only in slow motion. Get some of the books on grieving and start the process now.

Yes - I watched my mom's staunch independence slowly crumble while she tried to understand and accept what was happening. Underneath the facade of bravery, I think there was a great deal of fear. She had a habit of closing people out to maintain her independence.

It takes just the right moment; something you can't really plan, but must be prepared to seize when it comes. A gentle moment when you may want to take her hand and tell her that you see things happening and would like her to know that you are there for her. Maybe then she will be open to hearing what you have to offer. Stay in touch.

Watching my mother "slow down" over the last several years has been tough enough, but her sudden plunge over the last month has been brutal. In early June she was puttering around the library and gabbing with the librarians, feeding the birds and so on, today she's terrified to move and needs to be changed all the time. the slow decline you expect, the sudden one you never see coming.

I once had a wise teacher tell me "there are only complicated answers to complicated questions", inviting the complexity. The challenge for me is to live in the tension of not knowing, where questions overshadow knowing. That sums up my experience with my husband's Alzheimer's and Vascular Dementia. What gives me the courage to continue is both going within through some form of meditation and being in community...Blessings and all good

Just dropping by to say hi.

Some things are meant to be. They’re bigger than us. Bigger than coincidence.

And the only way you can explain them is…

God.

We are here because God wants us here. I know that. We all do.
I think I've cried more tears over what is happening right now than all of us put together.

I've always been very strong...

but not this time.

It's very sad to see my mom, who is almost 90 years old, and was living on her own until this happened. I am witnessing her decline more and more every day. I just don't have the strength to see her in bed all the time now...tired all the time and suffering. I've never seen her like this before.

She has now fallen more than 5 times since all this started in December, bruising and scraping her arms and legs. (She admitted she has no idea why she fell). Her Pacemaker had to be reprogrammed. She doesn't laugh and joke like she did before. Mom... I miss your joy and happiness.

The fall before last was so bad that she fractured her shoulder (humerus) but could not undergo surgery because of her weak condition so she has been living with a lot of pain since her fall.

I can see that she is fading away...

I don’t say those words lightly. As a matter-of-fact, I haven’t said them at all. She looks frailer and frailer. I'm grieving over the Mom I had, that I'm losing. The slow decline you expect, the sudden one you never see coming.

Her legs and face have been swollen these past two weeks. And her blood pressure seems to be very high some days but will drop after taking her medication.

I'm trying to keep her company as much as I can and take her to her doctors' appointments...

I want her to have a good quality life... I'm just going to keep her in the best shape for as long as I can so that she can remain as independent as possible (which she wants).

I came upon this prayer someone wrote for her Mom...

And now I pray this for my Mom as well:

My dear sweet heavenly father I come to you today,
with faith and hope I ask, send an angel Mama's way.
I know her time is near and soon you'll take her home,
to stroll across the streets of gold where other angels roam.
It's hard to watch her suffer and slowly fade away,
help me God to understand, give me strength I pray.
She means so much to all of us, forgive me for my fears,
life will never be the same without her presence here.
My mother is my angel, she taught me how to love,
and told me about you lord and heaven up above.
When she crosses over and steps into the light,
tell her that I love her and when the time is right.
Meet me at the pearly gates where every thing's brand new,
we'll walk across God's meadow lands where skies are always blue.
Somewhere beyond the sunset every now and then,
I pray she watches over me until we meet again.

I hope I haven't bored you but I needed to get these emotions out of my chest.

Thank you for listening to me...

kyoung

The words that come to mind as I read your note were "expectations", "support " and "acceptance". Journaling helps me. I ask myself...how would I like or expect things to be? I write my thoughts quickly not focusing on gramer, spelling or trying to make logical sense. For me I'd write...
" I want ____to know that I care, to thank me to hug me to reassure me that everything will be alright. I want things to be the way they were"
Acknowledging my feelings by writing them down kind of makes it real; both what it's like now and how I want things to be. In a way, I'm honoring my desires, feelings, my needs in that moment.
Support: it can become my prayer , nothing formal or fancy... Sometimes more like the crying out at/God the Job did in the bible; sometimes I see out a friend I can rely on... asking her to just listen ( kind of like your mother does with you). Or writing this group; seeing a counselor or joining a caregiver support group; all of which have been of support to me...reminding me that I'm not alone.
Acceptance: this is hard for me! If I'm wacky with worry or getting angry it's usually because I'm not in control of what's happening with my husband or I'm mad at myself for not being stronger or in better balence or what ever. I literally have to tell myself ( many times and even sometimes out loud) ... " I'm doing the very best I can." By saying this, I'm forgiving myself for not being the perfect wife...or my self pity.
I went on and on here. I hope this helps. (Honestly... it was helpful to me!) blessings Elle

Many of us have been where you are, Kyoung. We are with you in spirit. To me, this was the hardest time - grieving before they were able to leave their wracked bodies behind. Blessings, my friend. Go ahead and cry. It does help. For sure, pray.
Carol

Blackpine.....I do know that with EVERY fall there comes decline. It's possible that she has some mental issues going on as well. Since she lives by herself are you sure she is eating correctly, the right times of day or even at all? Taking her medicines correctly? My mom would swear she was and she wasn't doing any of the above. One particular fall I had to stay with her and I watched her for a couple of days. She did nothing she was suppose to do. When questioned she would say she had been to the dr. or didn't need to see one and we HAD seen the dr. It might be time to start thinking about assisted living so she can be watched better. I know my mom wouldn't have used an alert device. She would have taken it off and hidden it since she didn't NEED any help, which she did. Sorry to say your husband might be right on this if she isn't moved to another facility. Is she social? Would she enjoy more activities since you only see her once a week? I pray she doesn't drive anymore. Anyway, just some thoughts from someone who has been there. My mom was really a sweet person until she fell the first time and then it was downhill from there. Unfortunately she has dementia as well. Good Luck and God Bless.