Our Slow Decline
June 26, 2010
I was with her when the doctor said…No more driving. Then as if that weren’t enough shock to absorb in any given moment, he followed up his proclamation with…and now is the time for assisted living. There wasn’t much tenderness, certainly no words of empathy about the loss of her independence, or leaving the home that has stored a lifetime of treasures and memories and been her safe haven from a world that was often too overwhelming.
We’ve known this was coming. But we have all agreed to wait and see…see if the next fall she suffers will render her less capable than the one before. See if after the trauma of the car accident has passed, her memory might return. But the other day, when I stopped for by for an unexpected visit and she looked me right in the eye and spoke about people I didn’t know, relatives that never existed, I knew we were reached a different place
So after multiple tests, including enduring hospital food for four days and the wrong medication, we are together in her home again. She is filled with appreciation and denial. She is sure that things will improve and she will be driving and planting her summer tomatoes before we know it.
She has an amazing sense of humor. She always has. She has been able to make me laugh in times so dark I just wanted to disappear. She has always laughed at herself, her own idiosyncrasies and how she is absolutely NOTHING like her wing-nut brother and sister. We laughed last night…about memory loss and aging, about diapers and food spilled down the front of every clean shirt. She recalled detailed stories from the past that had us both remembering and revisiting. But then she couldn’t remember if she had taken her p.m. pills, or where she had put her jewelry or what the dr. said about her driving.
I explained again, knowing I would explain again, and again and again.
I find this moment, this transition for her and therefore all of us who love her, feels like a mental version of tai chi. She comes forward with doubt, frustration and fear of what she must leave behind before knowing what lies ahead, and I don’t resist, or offer any objection or impatience…instead I lean with her, I surrender control and let her move as she needs to so she can naturally find her own balance. By doing so I know we are working together to create an altered life… for both of us. Every day will be different than the one before, but the truth of loss will be consistent. We are learning to let go and hold on for and to dear life at the same time.
She has been my safe haven and now I am hers. I hope I am up to the challenge.
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Tai chi, as I practiced it, is a mental discipline. And you are up to the challenge. It may be difficult, you may feel like your not capable, but do not give in to that momentary normal human experience. Acknowledge and move on. I took care of my mother until she passed away. This was 15 years ago. Looking back, I think I did pretty well, but there were times when I could have practiced more patience. That’s just how we are made. It sounds like you are embracing it wholeheartedly. And as such, there will be laughter, tears, frustration and miracles. I pray you and your mother a blessed time in each and every moment you have.
It isn’t an easy journey you are beginning to take. It IS filled with tears, laughter, sadness and moments of delight! It is never easy telling them you can’t drive anymore, you really should move from your house to an apartment or assisted living – the list increases as their capabilities decrease. We’ve been moving towards this point in time for a couple of years.
Just this week we made the decision that Mom’s ‘visit’ to the Nursing Home for extended physical therapy was indeed going to be a permanent one. I haven’t the heart to tell her yet, she knows that she’s going to be there for quite some time, because her physical abilities have declined so much in the last few months. She knows that she can’t go home without extensive assistance. Unfortunately she’s having more confused days than not so will not be safe even if she regains her strength (delightfully confused her nurse tells me!!) She cries most days thinking about being in the nursing home for a long time – so I hope to acclimate her socially before telling her I can not out of love for her let her go ‘home’.
As you might expect this is breaking my heart. But I have found that if you address her concerns head on and not dwell on them, she accepts things better. I’ve found being happy and light hearted helps her mood perk up and makes for a happier Mom! If she complains about the food – I ask her what she’d like to have and bring it to her! If she complains about the cold, bring her a blanket from ‘home’. If I reassure her that I’ll do my best to ‘fix it’ that seems to satisfy her.
I wish you strength on the days you feel you have none – I wish you hope and love on the days your beloved Mother is not the person she once was and I wish you peace on those days when you feel ‘what else can happen today?’
I cried reading this article. my mom died at 58 after a year of struggling after a stroke. She was dealing with diabetes and my father was moving to a different province with his girlfriend not saying if he would be back or if he would send money.I went to help every sunday and she was difficult to be with. I do believe the feeling of powerlessness was overwhealming for her therefore she kind of took it out on the loved ones. she decided for herself to go instead of facing dispair alone. I did not know the Sunday that she called for a visit and I could not go that the next morning she would be gone. Now that I have surpassed her age, I live alone and I had a fall last winter but I have taken steps to keep my strenght and vitality to keep my independance and not be a worry for my girls. I now use a system called MRS2000 a magnetic resonance mat and alcaline water Kagen to be precise together with my herbal supplements and I am feeling better and better everyday. I want to be as alive and perky as possible and I want to stay in my house as long as possible. Kuddos for those ladies that can take such good care of their mom, just remember to take good care of yourself to. Lisette
A hug for you for the loss of your Mother! Yes I too have found that my Mother’s hurt and anger is taken out on me mostly but my brother and sister as well. I guess they feel safe that we who love them most can be their sounding board!
I like your proactive choices now to hopefully prevent future complications. It is advice that we should all consider taking!
The stress that caregivers go through in helping aging parents is, I think, more severe than many people realize until they have to go through it themselves. I know this from two perspectives, really. One involved helping my own mother during the last two years or so of her life, when she was struggling to remain independent but had heart and diabetes issues that worked against her. At one point, she suddenly required a brief stay in a nursing home, which helped her regain the strength she needed to continue, at least for about another year. Then a severe heart attack claimed her.
But my other perspective now comes from working as admissions director in a skilled nursing facility called Whitehall Boca. I’ve always been in nursing care, and this place in Florida is one facility I’ve found (sometimes to my own astonishment) where I can really help caregivers almost as much as patients. See, what often happens is that a seemingly controlled medical problem for a parent abruptly takes a bad turn and those whose hearts ache for their parents really don’t know what to do. Other times, a person who’s been in a hospital is released so soon that the person clearly can’t just go home and take care of him or herself. Those are the kinds of occasions when caregivers will call, totally uncertain about their options. They’re scared. Their loved one is scared. And action has to be taken quickly. Honestly, my heart bleeds for all of them.
The thing is, most often nursing homes and rehab centers do their best to accommodate all kinds of people. And very few are the scary, horrid places you might have read about in the past. Still, it’s really, really helpful to know in advance what to expect and what to ask when all of a sudden you find yourself in this kind of situation. That’s because those situations do come up, and again, it’s often when people are least prepared to deal with them.
All decent nursing facilities should give detailed tours and be prepared to answer questions. That’s a given. But what I’ve found is that often people don’t know what to ask — and that just makes the caregiver’s stress load even worse. I don’t know if anyone on this list ever might need someone to just give them tips and alert them to what’s involved in picking a good nursing facility, but if you’re one of them, I’d be happy to personally answer your questions.
you are amazing…I support you and the love and kindness you are extending to your mom. We virtually are in the same place.
I had and interesting thing happen the other day. My mom called about 5 times in 30 minutes. The last call was recorded on my answering machine and the next day I realized it and listened to it. I was mortified and humbled. My impatience was palpable, my frustration and tone of voice so rude.
A blessing…I caught my breath and came face to face with how I want to feel about myself when this chapter is done. I am letting go as much as I can. That helps. I can’t seem to love her into making better decisions for herself right now, so letting go and eliminating the struggle is a good option.
thank you and bless you
Oh thank you! There are days I don’t feel I’m doing my best believe me! My challenge to myself is to never let her know my level of frustration and impatience.
None of what’s happening to her is her fault so I think to myself ‘how can I blame her?’ It is a struggle. As all of us who have posted here love their parents – I love my Mother unconditionally and who better than I (and siblings of course) can help her navigate thru a frightening and complex maze of experiences?
I had an OMG moment yesterday. The nursing home called me and said they were sending her across the street to the hospital for a Doppler ultrasound – they suspected a blood clot in her leg. It was and her doctor admitted her for some treatment. The floor nurse called me later after reviewing her med list and asked if I knew if and why the doctor had changed a heart medication from an April episode to nothing? I of course did not know that she wasn’t taking it. I realized in all the hoopla from a May hospitalization to the nursing home (which involved a transfer from one far away to a local one – which is a whole other story!) I had not confirmed nor compared her medication list!! What a misstep on my part!!! Add to that my list of myriad last minute things to do for my son’s wedding this Saturday and I had a mini guilt session! To which I must add explaining to her that an event she has so looked forward to, she may not get to attend. There will be tears on both sides as I explain it. I set the stage yesterday by telling her IF that happened there would be tons of pictures and a video of the ceremony for her to watch. I’m hoping that she’ll have enough clarity to understand that not going is for her health and well being.
So, I sympathize totally in your moment of impatience and frustration. We are in the process of defining this new frontier and it’s not easy fumbling our way thru sometimes.
It is conversations such as this one that make me love VN and the platform it gives us to talk about, support and learn from each other!! It’s a way of ‘holding hands’ as we all go thru this together.
Had an out of town trip scheduled a few weeks ago, and placed my Dad in respite care at an Independent/Assisted living facility. Turned out, much to my surprize, that he liked it. I quickly moved him in to an available unit without taking him back to his home. My bigget fear, was that if it he went back to his home, I’d never get him back to the facility without a fight. It has been difficult. Had to take the car keys away a month ago. He was driving and getting lost-police bringing him home. There was no way that he could live in his home without driving. The next move would have been with me, and I thought this facility would be worth a try. Working out so far. It’s a heart breaking experience-to see your parent decline-but I think this option may actually offer him a better quality of life. He loved to drive to restaurants, so going to the dining room for three meals a day is working out great for him. He loves to be waited on! Good luck all!
I love that your Dad is enjoying his stay! What a moment of relief it must have been to find that he’s jumped in socially in his environment. To me, that is a key component to their transition – being able to find new friends and activities to participate in. That’s been important for me, socializing my Mother to the Nursing Home! She’s inclined to ‘dine’ in her room – I make her go to the dining room at least once a day. It is her choice which meal she goes to, but she has to go at least once. My prayer is she’ll find another resident with similiar interests that will help her pass the time and not dwell on ‘why am I here?’ and ‘I want to go home!’
Blessings to you and your Dad!
The stress that caregivers go through in helping aging parents is, I think, more severe than many people realize until they have to go through it themselves. I know this from two perspectives, really. One involved helping my own mother during the last two years or so of her life, when she was struggling to remain independent but had heart and diabetes issues that worked against her. At one point, she suddenly required a brief stay in a nursing home, which helped her regain the strength she needed to continue, at least for about another year. Then a severe heart attack claimed her.
But my other perspective now comes from working as admissions director in a skilled nursing facility called Whitehall Boca. I’ve always been in nursing care, and this place in Florida is one facility I’ve found (sometimes to my own astonishment) where I can really help caregivers almost as much as patients. See, what often happens is that a seemingly controlled medical problem for a parent abruptly takes a bad turn and those whose hearts ache for their parents really don’t know what to do. Other times, a person who’s been in a hospital is released so soon that the person clearly can’t just go home and take care of him or herself. Those are the kinds of occasions when caregivers will call, totally uncertain about their options. They’re scared. Their loved one is scared. And action has to be taken quickly. Honestly, my heart bleeds for all of them.
The thing is, most often nursing homes and rehab centers do their best to accommodate all kinds of people. And very few are the scary, horrid places you might have read about in the past. Still, it’s really, really helpful to know in advance what to expect and what to ask when all of a sudden you find yourself in this kind of situation. That’s because those situations do come up, and again, it’s often when people are least prepared to deal with them.
All decent nursing facilities should give detailed tours and be prepared to answer questions. That’s a given. But what I’ve found is that often people don’t know what to ask — and that just makes the caregiver’s stress load even worse. I don’t know if anyone on this list ever might need someone to just give them tips and alert them to what’s involved in picking a good nursing facility, but if you’re one of them, I’d be happy to personally answer your questions.
My mom died near Halloween last year. She went from living on her own to an assisted living, then to a senior apartment, to gone in about 3 years. I too was with my mom when she was told she should no longer drive. First she couldn’t believe it, then she got mad, at me. (I was the one who took her to the Dr.)
When mom first moved into an assisted living, she wouldn’t interact with any of the other residents. She was pissed- again. I understood it, but it was very frustrating. Eventually, she accepted her fate and made friends.
I had done a lot of research and the place she went was actually wonderful. It was one story and looked and felt like a country club. It didn’t look or SMELL like a “facility”. The problem was, it was over $5K a month! But it was a great place for her to transition after being on her own her entire life.
Sadly, once my mom left her house she was never quite herself again. Of course a lot of that was probably because she could’nt drink almost a qt. of bourbon a day- and she only weighed 115 lbs.
My friend of over 30 years still has her mom, who is in a nursing home now; and although her mom still remembers me, I’m one of the few that she does. It seems Rosie must to attend to one emergency or another at the nursing home at least 4 days a week. It’s been this way for 4 years. Her mom is physically healthy so this could go on for a very long time.
I found myself with a lot of conflicting emotions over her last few years. A gulf developed with my brothers that will never be bridged. I’m OK with that now. I hope you have some support as well. I discovered that even when mom was well taken care of in a nice, safe place, I felt I never really relaxed.
Just remember to treasure her good days and remember to breath deeply on her bad ones.
Thank you for the grace you have chosen and are willilng to share and inspire others…none more than me
This is a difficult journey and more of us are learning about it every day. No two people have the same story to tell. I am glad that so many of you are telling yours here.
Lynn
http://www.writeradvice.com
Author of You Want Me to Do WHAT? Journaling for Caregivers
Dear, dear Kristine—–one thing I know for sure. Alzheimer’s is the ultimate teacher for living in the moment. No matter what was going on with my mother……milli-moments later, SHE had no memory of it. It occurred to me that if she could let things go, I could too. Over and over, let the moment go. The one thing she remained clear about was…love, whoever exhibited energy that was warm and kind, she gravitated to—-eventually she had no memory of me as her daughter but what she knew for sure was that “You are a very nice person who loves me.Have you met my daughter. I think you and she might become friends one day.” If I had stayed with the sadness and frustration that comes with knowing each of these moments too well, it might have clouded the love I always wanted her to know was the only thing that mattered anyway. No matter what she told me—like—”You know why they hired me don’t you? Someone had to play the piano for all these old people!” (Every time I came to visit, she was certain that she was working there.) I never argued with her. With that, we would go into the “community room” where she would actually play the piano! I am here for you.
Sharing the time together is wonderful; don’t forget about support for you. For a break, Adult Day care offers classes for her and safe place with mental stimulation while you get a break. For a complete directory of centers across the US, check out the resource page at Silver PLanet, http://www.silverplanet.com/service/resources/directory For personalized consulting on a plan of action, there are professional care managers who can assist you by phone: http://www.silverplanet.com You are not alone in this, and reading about what’s out there and talking to others will enrich both of your lives.
bless you…they have been an amazing resource
I have been the immediate care-taker of my 91 year old mother for the past couple of years. She is in the moderate stages of alzheimer’s disease, but othewise seems to be just fine. I actually took the car keys from her about 10 years ago and she didn’t fight me about it. She says she was starting to get a little scared of the people and traffic around her, so I felt that if she was frightened, then it was time to stop driving. As her disease progresses, she has become more and more forgetful each day. I use every ounce of patience I have, to deal with repeating myself over and over and over. She often wants to talk about the past and asks me questions, as if I was there, but it was before my time. She asks if I remember when we lived in Buffalo NY in the 1940′s when I wasn’t born until 1958. Sometimes this situation gets frustrating, but I try real hard not to show her that my nerves are frayed. I plan to care for her without ever having to put her in any assisted living situation. I don’t think she can take it mentally and I know it would never sit right within my own heart. It takes alot of time, patience and understanding and I am sure I have enough to hang in there…
I too am caring for my almost-93 year old mother at home, and have been for the last 5 years. She has mid-stage dementia/Alzheimers. She doesn’t remember if she has eaten or not, even if it was only 30 minutes prior. And yes, one gets used to, or puts up with, repeating the same thing over and over. I find myself losing patience too, and feel guilty, but think it’s probably natural. Unfortunately I have no support system. (I have a brother but he and his wife decline to help my mother or WITH my mother at all. Pure selfishness on their part.) I very often feel trapped. But on the other hand I care very much about her. I refuse to even consider putting her in a home until/unless it’s absolutely necessary. I know she would go downhill really fast. She seems reasonably strong apart from the memory situation and being somewhat frail. But she sleeps in a chair for most of the day – I suspect it’s out of boredom as much as anything else. I usually have to wake her up to eat. One day, when she’s gone, I know I am going to feel devastated. But also liberated if truth be told. But I like Peggy’s philosophy above….about letting things go, as her (and my) mother does. Wise words that I will try to remember in trying times.