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Parkinson's disease caregiver
Parkinson's disease is a progressive condition, which affects both physical and mental health. It involves a gradual decline, the associated changes leaving one in assistance for even the simplest of tasks. Seniors are often diagnosed with Parkinson's disease, needing the help of their loved ones. Family members turn into caregivers, doing their best to compensate for the lack in ability and cognitive capacity. In the paragraphs that follow, we will talk about this subject, so that you will have a lot of useful information related to your caregiving journey. As you might discover on your own, the importance of self-care should never be underestimated, especially with consideration to the risk of burnout. There will also come a time when you will have to consider other long-term care options, such as continuing care, assisted living, or skilled nursing care.
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Who is a caregiver?
Seeing your loved one lose his/her abilities due to Parkinson's disease day by day can be very frustrating. The inability to control movement, persistent tremors, lack of balance - these are just some of the changes one might have to deal with. Seniors who have been diagnosed with Parkinson's disease present an increased risk of falling, which can lead to subsequent injuries. They might end up falling in their home, without anyone being there to help them. In addition, elderly people suffering from Parkinson's disease will need someone to help them bathe, eat, or dress. Considering all these challenges, oftentimes family members choose to assume the caregiving responsibility to keep the loved one safe.
The caregiving journey will represent a new chapter in your life, one in which you will have to learn everything there is to be known about this condition. Educating yourself on the topic of Parkinson's disease will mean that you are able to look after your loved one. You might deal with exhaustion and stress, doing your best to handle all those complicated emotions. Nonetheless, you have to think of your senior and how much you are needed. Caregiving will ensure a high quality of life, despite all the challenges brought on by the diagnosis. By looking at your journey from this perspective, you will find it easier to make it through the most difficult moments.
Parkinson's disease is a condition which requires 24/7 supervision and monitoring, not only because of the obvious need for assistance, but also as elderly with this disease are prone to falls and other injuries. It might be necessary to make adaptations to the home environment, so that such risks are minimized. As seniors with Parkinson's disease have both balance and coordination issues, caregivers might be the ones to offer physical support. The disease can be invalidating, affecting the senior's motivation. In this situation, the caregiver might also assume the role of a "manager", keeping track of appointments, money, and medication. Depending on the severity of their condition, seniors will be assisted with ADLs. The more the condition progresses, the higher the level of help will be.
In advanced stages, seniors need help moving, their lack of coordination and the persistent tremor making even the simplest of movements difficult. Caregivers can offer not only physical support but also reassurance, which in turn will reduce the feelings of depression and anxiety. They help their loved ones maintain a sense of structure, with a daily routine that is enjoyed to the fullest. Caregivers might encourage a senior to complete certain tasks on their own, or at least to participate. Special activities are chosen to stimulate the brain, including in the open outdoors. The social calendar might include group events, in accordance with the senior's ability and strength to bear them.
Steps to take after the Parkinson's disease diagnosis
When the diagnosis of Parkinson's disease is made, the person in question will go through the most complicated emotions, including anger, frustration, and sadness. Many seniors are confused or uncertain, not knowing what will happen to them. Caregivers are often part of the acceptance journey, realizing how important their role actually is. They are looking after their loved ones, helping them manage the challenges associated with their condition. As the caregiver, we encourage you to take a deep breath and think about your role. Look at caregiving as a gift or a blessing, guaranteed to teach you about love and compassion. As a result, you will want to change your life as well, realizing what truly matters.
As previously stated, one thing you can do is read about this condition and its symptoms. There are plenty of resources online, with advice on how to look after your loved one. At the same time, it is essential to practice self-care as well, otherwise you might deal with health issues yourself. Think of caregiving as an expression of love, one which can provide you with a sense of purpose and achievement. It will teach you important lessons, many of which you will be able to use in your own life. Speaking from a practical point of view, you will gain a lot of experience. Even something simple, such as joining a support group, can help you gain insight and broaden your perspective.
Acceptance is the first step in the journey and the one that will help you deal with all the emotions experienced on a daily basis. The best thing you can do is organize your caregiving responsibilities, starting with a journal in which you will record everything. You might include financial details, significant dates, and appointments. Be sure to add all the resources you might need, including the contact information of physicians and other healthcare professionals. It might be a good idea to put this together with your senior, as such contributions can often reinforce one's sense of motivation. You might not be aware of this for a fact, but staying organized can make the difference between peace and chaos.
The local community can be a fountain of useful resources, especially since there are so many associations dedicated to seniors with Parkinson's disease nowadays. These organizations, many of which are non-profit, offer support to both seniors and their caregivers. You can benefit from support and advice, not to mention education on caregiving. There are local support groups that you might consider as well. What matters is that you are up to date with the latest developments in the field. The constant interaction with specialists will help you handle the challenges of caregiving, but also to settle your emotions. When caregivers are given the opportunity to receive specific trainings, they might find it easier to adjust their expectations and feel less frustrated as a result.
Equipment and other products Parkinson's caregivers might consider
When it comes to someone who suffers from Parkinson's disease, it is important to choose devices that improve the overall quality of life. The choice of equipment is dependent on the desire of minimizing the challenges brought on by this condition. It might also be necessary to adapt the living environment, so as to allow seniors to function independently, as much as it is possible. All the pieces of equipment or assistive devices should be chosen in accordance with the senior's needs. For instance, there are plenty of mobility aids that help seniors change positions or move, with a low risk of falling or other injuries. Other products are designed to make ADLs easier to handle, with minimal support from the caregiver.
To stay organized, you might consider investing in a whiteboard, which can be useful for making lists or writing down various reminders. A journal, as previously mentioned, can help you stay on top your responsibilities. Given that seniors with Parkinson's disease often have to take a lot of medication, it might be a good idea to purchase a medication box, preferably one that has the days of the week clearly marked. For those who suffer from advanced forms, an automatic pill dispenser might be more suitable. To compensate for the persistent tremor or abnormal movements, you might invest in eating utensils designed especially for those diagnosed with this condition.
It might be necessary to install grab bars and support rails throughout the house. A stair lift will help your loved one navigate the upper parts, without any risks for his/her safety. As for the bathroom, you might consider pulleys for bath transfers, bathtubs with doors, and non-slip mats. The toilet will most likely have to be adapted as well, with grab rails installed nearby.
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Also, consider nighttime accidents, as it might be difficult for seniors to reach the bathroom in time. It is for the best to invest in a waterproof mattress, incontinence pads, and incontinence pants. Another good idea would be an adjustable bed, with pulleys or rails for changings positions or transfers.
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Parkinson's disease can rob one of his/her ability to walk independently, so this point will have to be considered as well. Aside from the cane, you might consider a walker or a rollator. The main idea is for the respective tool to enhance mobility and balance, while keeping the senior safe.
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Grooming can be simplified with the help of devices such as the electric toothbrush or razor. The same goes for dressing, which can be made easier, thanks to clothes with magnetic fasteners and shoes that are slipped in instead of tied. Many seniors will rely on home safety aids, preferring to invest in a personal medical alert system. As the caregiver, you can monitor the smart home technology device, teaching your senior how to use the voice activation feature.
As this condition can impair speech and communication in general, you might consider tools that can help with such changes. Aside from visual boards, there are various smartphone apps that can be used to communication, not to mention voice amplifiers, which can be quite useful. Memory and visual aids can help seniors who are also dealing with cognitive decline, including calendars and alarm systems. Last, but not least, you should consider recreation and leisure aids. For instance, there are many seniors who love to read but are unable to physically hold a book. In this situation, you can offer audiobooks as an alternative. Assistive technology remains one of the number solutions for those who suffer from Parkinson's disease, allowing them to move, communication, and function more effectively.
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Self-care for Parkinson's caregivers
There are no written rules when it comes to looking after someone with Parkinson's disease, but there is a piece of advice worth following in all situations. The advice? Look after yourself first. If you are able to maintain the best possible state of health, then you will also have the energy and strength to act as caregiver. Getting help is recommended, as burnout often occurs in those who attempt to handle everything themselves. It might be necessary to assess the needs of your loved one and how much support you are able to offer. Once you have done this, you can determine the extent of outside support that will be necessary, and how you are going to obtain it.
It can be difficult for caregivers to take care of themselves, especially since they are so focused on their loved ones. However, you have to make an effort, as maintaining your health means being in the best capacity to act as caregiver. Make sure that you are keeping up with both medical and dental appointments, not to mention you have a stable financial situation. If possible, consider joining a support group. You will meet people who are going through similar experiences, having the opportunity to talk about things that frustrate you. The support you will receive can make a genuine difference, and you might be able to discover new coping strategies. Simple things like getting enough sleep, eating a healthy diet, or going out for a walk can help, more than you can imagine. The same goes for taking breaks and having social activities to enjoy.
Getting help should not be seen like a sign of weakness, but rather as a smart gesture, one can allow you to go on. Additional support, whether it comes from your own family or an outside source, will restore your sense of confidence and lessen the isolation you might have experienced as a caregiver. This new person might have new ideas on how to care after your senior, not to mention you will finally have the opportunity to take a much-needed break. In thinking about outside help, be sure to consider the local community, as there are plenty of opportunities available. You might even consider talking to a social worker, as this specialist can help you discover other useful services.
Caregivers will often report how hard it can be to maintain a satisfying relationship with their senior. The progression of Parkinson's disease will often impact both communication and cognition, not to mention the fact that many seniors hate to depend on someone else. As the level of care increases, you might find yourself challenged, finding caregiving to be anything but rewarding. Once again, it is up to you to make an effort, maintaining a good relationship with your senior. This is beneficial not only for him/her, but also for you, reducing the risk of depression and anxiety. As a caregiver, you will constantly have to remind yourself of the difference you are making, and how you are acting out of love and concern.
You should never deny how exhausting caregiving actually is, as repressing the truth can only add to the stress you are dealing with. To be the best possible caregiver, you need people to rely on, people you can call when you need a break or if an emergency has occurred. As you might discover on your own, there are outside resources available, such as in-home care, adult day care, or respite care. Temporary help will allow you to pursue your own interests and have a social life. It can prevent the accumulation of stress, which in turn might lead to burnout. Do not wait until things reach boiling point, but rather seek out help when something does not feel right.
Self-care will also mean taking some time to acknowledge all the complicated emotions you are experiencing. Caregivers often deal with conflicted feelings, including sadness, anger, and frustration. They might feel incapable at times, blaming themselves for the suffering of their loved ones, even though this is rarely the case. If you are feeling more emotional than usual, it is for the best to take break and seek out help. At the same time, keep in mind that you are human and thus have limits. This experience should not be about perfection, but rather about realistic expectations. Know your limits as a caregiver and do not take on more than you can.
The caregiving stress can take a toll on your body, so you will have to find a way to release it. Many caregivers practice deep breathing and mindfulness, two practices which have plenty of benefits to offer for their mental health. Stress management is essential, otherwise you might be at risk for chronic health issues, such as cardiovascular disease, high blood pressure, or diabetes. Do not think that you need to show yourself strong in front of others, when vulnerability can bring just the thing you wanted, meaning support. Learn how to lean on others and form a strong caregiving team, with people who can help at a moment's notice. In this way, you can offer exceptional care, helping your senior living with Parkinson's disease to benefit from a great quality of life.
Here is a small checklist of self-care tips for caregivers:
- Time for yourself matters - from a small break to respite care, you need to make time for yourself
- Activities that release stress - mindfulness, deep breathing, reading, journaling, walking
- Physical exercise - regular physical exercise allows you to look after your physical and mental health, reducing the risk of depression and anxiety
- Get enough sleep - caregivers often deal with exhaustion, so find outside support, as this will allow you to sleep the recommended amount of hours each night
- Outside help - you can seek out support from friends and family members, even neighbors; additionally, you might consider specialized resources, such as in-home care, adult day care, or respite care
- Local community matters - there are plenty of resources available in the local community, including organizations that offer respite care, NGOs with trainings for caregivers, and support groups
- Join a support group - sharing experiences can help you feel less alone, not to mention you might gain new insight on how to look after your loved one
- Go to therapy - caregivers suffer from burnout, but also from anxiety, not knowing how to settle the balance between caregiving and personal demands; therapy can help you avoid further mental health issues and stay balanced
- Welcome others in your caregiving circle - it is no use to try and handle everything on your own, when working as a team will offer better results; accept help when offered and do not hesitate to ask for it as well
Long-term care options for Parkinson's patients
The most common symptoms of Parkinson's disease include tremors, rigidity or stiffness, slow movement or loss of movement, balance and walking issues. As the condition progresses, one might suffer from additional problems, including swallowing difficulties, speech problems, and cognition issues. Depression and anxiety are common, especially since the evolution of the disease leaves one dependent on others. Should the condition progress up to the point where your caregiving efforts are no longer enough, you will have to consider long-term care options. Alternatives include assisted living, continuing care, or skilled nursing care, depending on the severity of one's condition and the associated needs.
Take your time to visit different senior living communities and form an idea about the type of care offered. While this is a difficult decision to take, you will have to think of the advantages to be derived, rather of what will change. Long-term care communities welcome seniors who suffer from Parkinson's disease, offering not only adapted housing and healthcare, but also assistance with ADLs and useful services. Seniors have access to a wide array of amenities, with the daily routine including plenty of social activities. For those who are in the late stage of Parkinson's disease, skilled nursing care communities are another option. These facilities have extended healthcare and round-the-clock monitoring, with trained personnel offering the necessary assistance. The symptoms of Parkinson's disease are best managed within such facilities.
Looking after someone who suffers from Parkinson's disease is far from easy and it can lead to burnout, particularly if you forego self-care, which is so important. Caregivers should always strive to maintain a balance between self-care and caregiving, and hopefully this article has included some helpful pointers. One of the best things you can do is seek out breaks when needed, as well as taking time to pursue your own interests. Educating yourself on the topic is important, as it will allow you to be best prepared for any challenge coming your way. Keep in mind that your loved one might thrive in a long-term care community. Consider the best option for him/her, in accordance with the expressed needs and desires.
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