Its a strange thing having to make decisions for the person who made decisions for you for the first eighteen years of your life, and frankly I wouldn’t wish an ailing parent on anybody.
Learning how to respectfully disobey their desires when what they desire defies reason and puts both your life and theirs in jeopardy is like walking a tight rope. Trying to make a wise decision in these circumstances are overwhelming, and when the problem is related to partial memory loss the situation is amplified times 1000.
If you would have asked me before I married, moved 12 hours away from home, where my parent would stay in the event of illness the answer was easy, but also because in my mind I never considered memory loss nor the impact caring alone for an individual with memory loss what it took. Yah gives you glimpses as I have been blessed to see a family member who has had to be a caregiver for her husband walk it out, but with sons, in-laws, and grandchildren to assist with some of the load. Of course, they also had the added benefit of living in the area that this person lived their entire life which does assist with at least slowing down the rate of confusion and dementia that a complete separation from home turf could cause. But when that person would have to move away from everything that is familiar to them to live with you, it is a wild card to say the least. The support of living siblings become a lifeline, but somewhat out of reach when they are spread out as well.
The fairy tale of reliving dreams, reminiscing over old times, and even enjoying watching television together is replaced with frustration, irritation, and confusion. The person you confided in, at times even debated, but overall loved and respected looks and sounds like a stranger. The hope for even a moment of clarity and any spark of connection becomes the straw you grasp for. It’s a bleak reality, that is compounded all the more if you’re not prepared. Imagine if your parent literally was lost in their own mind and this all happened overnight. I’m talking a parent who lived alone most of your adult life, they live States away from you, and your siblings and suddenly they have taken ill. Your status instantly updated from being their child to also becoming their caregiver, what would be your course of action?
Unfortunately, many of us have absolutely no plan mapped out and about the only thing we do know and make known to our loved ones is we don’t want to be in a nursing home. So what are the options? Does a family move across the country to accommodate the wishes of the one parent, at the risk of their family? Does the ailing parent suffering memory loss move from the only familiar surroundings they know including the people they have known their whole lives to go to a strange land where all they have is you? And then what do the siblings who also are spread out have to do to see their parent-travel to this new land which could be across country for them? Then, if you do move them only to require more help then you can provide and in the end they still end up in a nursing home, from your home or in their home state.
The mental and emotional challenges are more exhausting then the myriad of paperwork and planning that it takes to make the transition from home to nursing home. But make no mistake no matter which choice you make your full involvement will be required.
As crazy as this sounds I thank God that even in this tragedy He is opening my eyes to an issue that in the day in and day out of living I never took time to think about. I wish it didn’t take what it took to open my eyes, but the reality is we are no longer in the society of close knit large families. In this nation most people stick to the 2.5 children and Lord really be with you if you have less. The strain and stress of trying to keep up with the Jones’s has caused many of our children to be total strangers to us as they age being more mindful of video games they played, television shows that raised them, and outings with peers because family simply was too busy to raise them. Babysitters, grandparents, unwed, single, without children siblings pitching in here and there, but parents have spent most of their lives attempting to acquire the “American Dream”.
So what is the mindset of children who were raised by this system when tragedy strikes their parents? They are equipped to return the favor, alleviate the burdensome situation by placing their parents into the system that they were desperately working so hard to get out of and to free their children from.
Does the child see placing their parent in a nursing home as the opposite of love? Of course not, if all indeed was done for the sake of the children then as the child grows up this mentality doesn’t change it evolves, and its evolution ends in “let the professionals handle this.” After all that is the reason why some of us who are not chasing the American Dream won’t pull our children out of the institutions of school and teach them ourselves.
Our generation has not been trained to handle when major problems arise, we can google answers, we can look it up in a book, or ask Sirius, so what should you expect from a mechanical age other then a mechanical answer. For those of us who would attempt to take in our loved one we live in a society where support from spouses, financial situations, and homes don’t accommodate those with disabilities, and the finances and time that it would take to bring it up to specs still leaves your loved one who needs help now in limbo. Bottomline, is whether you would take in your parent if you could, or their sickness requires more care then your home could adequately provide and a skilled nursing facility is required whatever your situation is do an assessment, not just for your loved one, but also for yourself.
While you are of sound mind have the conversation with your children or whoever you would entrust your estate to concerning your wishes should that time occur for you. Also, be reasonable, if you have spent the majority of your life alone with occasional visits from your family, but you have enjoyed your solitude and although you like your kids and family lived your life privately, plan wisely. Unfortunately, we have not maintained the communal mindset that once was prevalent in this country. Most people barely speak to their neighbors much less engage in bartering, visiting, and looking out for one another. So if you are a private person who have an independent rather then co-dependent mentality it is imperative that you take this time to begin looking at options available to accommodate you and the lifestyle you have grown accustomed to.
Living in a nursing home requires living in a community environment and even with the “system driven” mentality that we have been ingrained in we have always kept a clear separation between being involved in systems from without and being a recluse from within. One thing the American Way has trained us in is having our space, and one of the reasons why the idea of a nursing home rubs us the wrong way if we are honest is the communal aspect of it. This isn’t the whole but if we are honest we have grown accustomed to having our way, our space, and our privacy.
How do you plan for future changes that must occur because of your health?
- Begin having the conversation, first with yourself about what sort of communal environment you would be willing to live in should the need arise. Don’t be dogmatically against the notion. Begin considering under what circumstances you would be willing to go to one and begin researching the options that are available based on your income or services in your area.
- Be able to articulate to your loved ones your wishes and come together to discuss what role they should play in this process. Remember, you are not in this alone, be vocal with your family and friends what your expectations would be in terms of their involvement with you. Such things as if home visits would be allowed, if they would be willing to take you to church service on Sunday’s or commit to have a visit from family at least twice a week. Who you would want to be in charge of finances, your personal effects, etc… By simply having this conversation while you are in your right mind your brain may have a record of the updated conversation on the issue. Because if we keep meditating on our past response on the issue, and our adamant opposition to it we will be less willing to concede to it if we are faced with the reality of our condition. The leading cause of death in nursing homes are Alzheimer’s/Dementia. Its a disease that’s vastly affecting lots of people and even with the best of care, at the root of the disease is what is left to live for when you remember nothing? We stay connected primarily because of the people we are connected too. When we lose that connection life cease to have much meaning to us, and thus for all intense and purposes we are alive, but dead, here but not. This disease takes its victims while their bodies are still warm, but what accelerates dementia? Or should I say can it be accelerated? This may be the only foreseeable means by which you would be comfortable with living in a nursing home. At this point I am not sure that you would necessarily be willing, but more appropriately less able to vocalize your complaint. Which unfortunately also puts loved ones at a more vulnerable position, and requires family to be even more attentive towards that persons care for that reason. Being willing to go to a nursing home is not the same as you actually being required to go to one. But your willingness to go, and your preparation to go does assist your loved ones should one be required or needed.
- Be open minded. If you are mentally closed off to the possibility then nowhere you go will be good enough. Research requires that you do some investigating and there are a few things you should keep in mind when investigating.
- Make an impromptu visit to local facilities, and particularly on the weekend. Healthcare is a business like any other so be wise, these places want your business even if they are filled with a waiting list. In this industry people can be well one day and in the grave the next and just that quick a bed is available. So recruitment is always fair game. By visiting during off hours you get a chance to see how the unpolished services flow, things like staff attentiveness, treatment of patients, availability of needed services, security, and you get to communicate with people whose check isn’t based on commission or job dependent on recruitment.
- Ask other people you know who have had to use these facilities what their experience was like. If scouring the reviews on the internet is not reliable enough for you then ask your friends. Chances are someone you know has had to use these facilities for someone or know someone who has. They can tell you the pros and cons and can save you time and energy in checking these places out.
- Begin thinking in advance should the worse occur and your level of care requires more then your family could reasonably handle where you would want to go. Knowing how bad it can get means it is important for you to know how well the facility meets the needs of its patients. How clean and happy do the patients who are there look? What does it smell like? Make sure that you are in the skilled nursing area, we have been to places where the rehab section smells good and looks gorgeous and then when you see the skilled nursing side it is scary and uninviting. Be sure that if you do an impromptu tour that you are led to the area that would be your home should you be required to stay.
- Review all the options of care based on your level of health. If you were in reasonably good health, such that your family could house you, but you were still fairly independent and know that this would not be something you would be comfortable with on a continuous basis, find out what independent living or assisted living homes would be within your budget and to your liking. This would have to be an ongoing process. But make sure you journal your records and keep those who you care about updated as you make changes
- Write in Pencil. As stated this industry changes rapidly so don’t get too comfortable and stay connected. Stay regularly aware of changes in management, rotating personnel of your top list contending facilities, these are things you should keep tabs on. Thankfully, technology does allow for you to get e-mails from some of these places, I encourage you to get them and read them. If the activities and news you hear doesn’t excite you now then chances are it wouldn’t be of interest to you if your health was impaired. Which means you have to keep that in mind when laying out before your family your desires.
- Don’t choose alone. Its good to have someone to go with you for moral support as you make decisions as well as to think of the things you won’t. It’s a different thing when you are shopping for yourself, even if it is just for the possibility. Be able to articulate what you do and don’t like, consider it a buddy system thing, because again the person who is going with you might be looking for you, but by going they are also able to assess somethings for themselves as well.
- Top Contenders do a tour. Those places you are really considering you should do a full tour. Come again and get the tour of amenities, philosophy of the place, pricing, and options available. Many of these tours include a meal. This is very important, for many people the taste of the food can be a deal breaker so knowing how they rank in that arena also is important.
You don’t think about things like this until your faced with the situation and so it wasn’t until I was faced with the situation that I begin to analyze the fact that this can happen to anybody at any given moment and no one is exempt so we can’t afford to be dogmatic that we wouldn’t be willing to go to a nursing home especially if our loved ones are not in a position to care for us. To the child who would like to take in that parent, but that parent doesn’t really want to stay with you either, or even if they did want to stay with you, your living situation wouldn’t accommodate it find a suitable compromise. I believe at the heart of the issue with skilled nursing facilities is getting a good one, and indeed that is challenging. You will have to make some compromises and if your parent’s memory is gone enough that they don’t know who they are or where they are then you may want to consider moving them into a facility near you or near a relative who would have the time it would take to visit them regularly, develop rapport with the staff and hold their feet to the fire. Otherwise, if left with no one to visit there is no telling what condition your parent will be in when you do finally visit. This is an area where micromanagement is needed. Also, depending on their level of care you may want to consider having them in a nursing home, but taking them home with you for weekend visits or short vacations. Done regularly and consistently one can achieve the benefits of assisted quality care and spending quality time with their parent that when they were well was probably not spent.
Please be advised I am not bashing anyone who finds themselves between this rock and a hard place, because I am there with you. I had to really pray to God and be at peace about the possibility of having to put my loved one in a skilled nursing facility. The same questions I am posing I had to ask, should I bring them where I am or leave them where they are. I wish I could tell you I had a definitive answer, but the answer is still in the making, but I can say that I have a peace now that should I need to place them in a facility, I can be okay with that decision. You have to know your parent, know yourself, and know what is first in their best interest, and finally what is reasonably within your ability to do. Just make sure that you do for your loved one what you would want someone to do for you.
We don’t know how we are going to leave this life the only thing we know is that we are going to leave it and so it behooves us to do a little bit of preparation for the unlikely but possible event that could cause us to live before we wake up, and that’s if we do. There are loved ones who have outlived some of their children with Alzheimer’s, and many times the caregivers leave before the ones being cared for. We invest in funeral insurance and life insurance policies but we don’t invest what is most important to invest in while you are still alive, in the event that we don’t peacefully die in our sleep before losing our minds or our health. We don’t invest in spending time at nursing homes visiting those who have been put away, forgotten, never realizing that if it wasn’t for the grace of God we could be in the same situation, and as long as we are still living we don’t realize that there is no guarantee that this reality isn’t in our future. I am not saying all of this to get you fixated on any of this, by all means I am not suggesting make this your life’s work searching out a place you can be placed in the event sickness strikes. The greater message I hope to convey is while you are well, spend the time you have with the people you would want to spend time with if you were sick.
The greatest inheritance you can pass down to your kids is not houses, cars, or stocks and bonds, but the gift that keeps giving compassion, and love. Trust me if you should find yourself in this situation there are going to be people who you will want to care for your loved ones as though they were their loved ones, and trust me money doesn’t guarantee the best service. You can spend good money on someone caring for your parent and your parent be treated as subhuman, but it would be that person who gets paid the least, but loves your parent the most that will give you that priceless service. These are the things that the American Dream can’t buy for you, only loyal family and friends, and love and favor from the Lord.
I am working on a book/documentary called “If I Should Live Before I Wake” if these articles are blessing you and you want to be kept aware, I encourage you to follow me and as the articles drop you will be notified.