Over the holidays, the discussion came up again regarding getting older in a wheelchair and how the emotional toll is not being examined. Depending upon how long you have been in a wc will most definitely affect how quickly you age and what medical issues you will be dealing with as you age. But what about the emotional toll of dealing with it.
The discussion was around the fact that many family and friends were telling them that they should start considering other living options and look at assisted living facilities. True, we are still young by able bodied standards, but in their eyes we might be better served by checking into those types of services. Whoa, I said! I couldn't believe that was happening to them.
Emotionally we do have to be aware that we may not be able to do all we did before, but that does not mean we should get stuck in that defeatist thinking. I go back to a phrase in my favorite movie, Moonstruck, where Cher says "SNAP OUT OF IT" and try to not dwell on how much more we are being dealt as we age. After all, we have each other to lean on and like AbleThrive has shown, there is always a way to get things done.
I am able to relate, my family, meaning parents and brothers, have pretty much abandoned me because they don't want to bother helping me or they feel they are too old to physically help. that may be true physically but emotionally it hurts because I feel I'm a burden and nobody cares or gives a s***. I know that may be a bit over the line and they do care at least a little bit, but by not doing anything but calling me to see how I'm doing doesn't help much. just to have someone close by or near would help a lot, but they aren't even doing much in that regard. the closest family member to me is a 2 hour drive.
today was being picked up by a omnitrans access bus for an interview so I can use their service to be taken to dr appt.'s and other things on my own. my wheel got stuck going down my ramp out of my apartment, it went over the side so I wasn't able to move without falling over a 2 ft step, well the driver doesn't leave bus so they didn't help me and I had to wait about 30 min for a neighbor to walk by and I was able to get free on my own with their telling me how to do it because I couldn't see under battery operated heavy wheelchair(330 lbs). that would be very helpful if I had a family member close by.
anyway sorry about my complaining, just frustrated and feeling sorry for myself. sorry for rambling on. hope I didn't go far off subject of thread califanna.
Well Califanna, you have opened up a scary subject. I will be 70 next year and my husband will be 72. Each year we loose some functional skills just due to aging. I don't like to think about not being able to live independently, but I do contemplate the future. I wonder how long we will be able to stay in our own home. We are currently living in a retirement community of individual homes which provides lots of social activities if we can get to the clubhouses. My primary source of transportation is an electric golf cart which gets me close enough to all our venues to be able to walk into the facility with a cane or Walker. My husband does all the driving. The grocery, bank, hospital, some restaurants, pharmacy, and adequate shopping are within two miles of where we live. The house is totally wheelchair accessible. I am transitioning from stovetop/oven cooking to countertop appliances. I figure with the appliances I might burn myself, but I won't set myself on fire. With the changes we are making I figure we can stay in this house for the time being. What frightens me is either one of us being left alone after a spouse dies. Together, we are quite capable, but on our own, if no family members are close by, I think assisted living would be necessary.
I don't know if any of this rambling is helpful, but it gave me an opportunity look at the issue again.
It's interesting that this goes both ways. I am 73 years old and just had my 53nd anniversary as a quadriplegic. I just lost my 94 year old mother in May. She spent miserable months in a nursing home because her only remaining daughter (me) was unable to take care of her. That was really hard.
I read this and.it is the one thing that plays on my mind , 1 because I have an elderly mother who relied on me previous to sci , maybe to much ,shopping ,paying bills etc And I also.worked as a support worker for the disabled and saw people deteriorate.and end up in homes because they had no one to help which broke there hearts,some where young and some elderly and ive seen some god awful.care homes .. this worries me as I can no longer help my mother who now has to do everything herself , and about myself and my future Very scary when you dont have a partner who can support you , even if its for the emotional side and not just physical ..
Good thread. I vastly prefer more rural settings but we moved to a track home to be in a town we liked with a mild climate. Both myself and my partner need that. Now I contemplate an assisted living place, if I could find one I like, for multiple reasons. My husband had a stroke 3 months back and even before that his help was limited. My memory is poor and getting worse. I'm only 67. I have macular degeneration in both eyes, progressive deafness, etc, etc. Some of my physical problems are logically the result of a history of digestive difficulties so my body does not absorb all the necessary nutrients. Yadda, yadda- baically this body is failing quicker than most.
If I found a facility I liked that would be ok with me. Being around more people would be good, but I know no one else would ever cook food that works for me.
Sam, I understand your feeling neglected but I also understand being a relative who does not have the energy to help a loved one. I had cared for my dad until my accident, then it all fell on my sister and crushed her for 6 years. It was completely overwhelming- she could hardly ever leave the house, she was depressed and gained weight- it was awful.
My main strategy is to make sure I have the necessary drugs/chemicals to end this life at the time I choose. It is not that hard to slip into a state in which life is not worth continuing, then be helpless to end it. I focus on what makes my life good. We live in a time when bodies continue long past their useful purpose and one has to do some investigating and research to ensure we get out while the getting is good.
I see nothing wrong with an assisted living place that has a good cafeteria and nice social scene. Only problem for most of us is those cost real money.
I for one am not ready to move on. I have so much to live for, sure I'm in a lot of pain most of the time. I have many family and friends. I care about them all, they care about me. I understand about the nursing homes. They are not a great place to be. I understand because I had to put my first wife in one , as I wasn't able to care for her properly anymore. She was bed ridden for 13 years in my living room, and I was taking care of her and 3 of my grandsons who were all special needs My wife was on 38 different medicines and it just got to the point that I was overwhelmed. I'm remarried now and my life to me still has meaning, however I can see both sides now as I am the one who needs all of the help and love that I can get. I'm looking at ,at least four surgeries at this time, I am going to fight and scratch and claw to hang on for me, for my loved ones. These stories that we all have are emotionally gut wrenching, but my last chapter hasn't been written yet, not if I can help it. Just my thoughts and feelings, my prayers go out to you all. I'm sorry about this rant , but I just am not at the point of giving up.
I for one am not ready to move on. I have so much to live for, sure I'm in a lot of pain most of the time. I have many family and friends. I care about them all, they care about me. I understand about the nursing homes. They are not a great place to be. I understand because I had to put my first wife in one , as I wasn't able to care for her properly anymore. She was bed ridden for 13 years in my living room, and I was taking care of her and 3 of my grandsons who were all special needs My wife was on 38 different medicines and it just got to the point that I was overwhelmed. I'm remarried now and my life to me still has meaning, however I can see both sides now as I am the one who needs all of the help and love that I can get. I'm looking at ,at least four surgeries at this time, I am going to fight and scratch and claw to hang on for me, for my loved ones. These stories that we all have are emotionally gut wrenching, but my last chapter hasn't been written yet, not if I can help it. Just my thoughts and feelings, my prayers go out to you all. I'm sorry about this rant , but I just am not at the point of giving up.
TJ, Life is good when one has the kind of energy you do. I hope you did not perceive my own post as "giving up". I'm far from that- still full of piss and vinegar. Still, I am the sort of person who plans and prepares in advance.
I understand Tetra. I try to plan too. I try to get my ducks all in a row. And yes , I am still full of piss and vinegar also, although some others might say that , that's not what I'm full of . Lol
Sam, I understand your feeling neglected but I also understand being a relative who does not have the energy to help a loved one. I had cared for my dad until my accident, then it all fell on my sister and crushed her for 6 years. It was completely overwhelming- she could hardly ever leave the house, she was depressed and gained weight- it was awful.
physically I am able to take care of self, in fact I live alone, I just feel emotionally neglected by family because they don't take the time to see my actual needs and aren't doing really anything to help me out. in that I mean finding a place for me close to them because I did tell them I'm willing to move close to them just so they could check on me once in a while. oh well I guess I'm asking to much of family.
I hope I'm not talking to myself here but I have another thought about staying in our own homes vs. moving to some form of assisted living. My own experience as well as from watching my parents showed the overwhelming importance of long-term memory for functioning well later in life. This means you want to be in the same place for a long time. Once memory is undependable then new places or routines cause a lot of anxiety, erodes confidence, and speeds dementia into overdrive. My step-mother had advanced alzheimers and only coped as much as she did because she could rely on long-term memory of being in the same house for 45 years.
I recently moved from the northeast to California and its difficult to get settled. I've moved around quite a lot since 1995 and I can feel how disoriented my brain is compared to siblings or friends. There is a high cost to moving so my own strategy is to get it over with ASAP.
tetra, I agree with moving while it's ones own choice. I have seen so many older people disoriented in new places and miserable because it's not "home." sam, I don't think you are asking too much just asking that your family look at different places near them. One nice thing is that one can almost tour places online.
This is a very important Thread. I've appreciated reading all of your comments. "Enjoyed" wouldn't really have been been the right word choice,...as I'm sure is understandable. Contemplating where I'll go when I can't llive at home is sad. I will tell you that I saw life in a nursing home as simply "slow death". An assisted living facility appears to be a notch up. A friend of mine is in one of those, and we talk on the phone. The retirement community that anniem describes sounds very desirable, for those who can afford it.
Sam, of all the comments, I find myself identifying strongest with two of yours. I had a 'friend' who apparently thought that I would enjoy getting late night and early morning 'pings' on my cell phone...sending me a barrage of text messages of her 'inspirational' meanderings and silly photos, but without coming to visit me or calling me. Getting her to stop wasn't easy. My other event that matched yours was when my wheelchair went crooked in the driveway and one wheel went into the mud. I waved my arms at passing cars for 20 to 30 minutes without a glance from anyone. A lady parked to visit my next door neighbor and kindly extricated me from my predicament. I had an emergency call button around my neck, but that seemed like over-kill.
For now, I'm "home" and trying to enjoy every day of my freedom and independence.
I have been spoiled my whole life I had my own place by the time I was 19. I have 4 carers that I hired and most things are done my way especially when it comes to my care. Now that I am older I have been afflicted with chronic bladder infections and open wounds. I am 50 now so I often think what if I can't manage my staff anymore. I won't do well in assisted living or a nursing home it scares me especially the nursing home. I am a c4 quad I need a lot of help. I know I have a ways to go but it ways on my mind.
Emotional quotient is one of the most important aspect after injury for us. Even before injury, I used to think that a person[including able-bodied] will become vulnerable to varied thoughts and depression when he/she doesnt have someone to support emotionally. This is more in our case. Physically, yes, we do need support and people can understand that. Someone may help if we are struck as they can see that physically but noone can understand what is happening emotionally with us.
I think if there are two friends who are in wheelchairs, they may not be able to help eachother physically and have to struggle. But they can help eachother emotionally. That emotional help gives more happiness and satisfaction than someone who can just help physically.
Emotional quotient is always underrated even for able-bodied people. It is given even lesser importance in our case.