One of the most difficult things one can experience in life is for their spouse or partner to be given a diagnosis of a dementia-related disease. Alzheimer’s, vascular dementia, and other disorders can seem to rob you of you a lifelong partner and force you to have to undergo the painful and often stressful transition from a partnership to one where you are a caregiver for someone who can grow more distant with time.
It is important then that you understand what’s in store so you can begin to cope with not just what has happened, but also what is to come. It will be a long journey and at times it will feel like an impossible situation, but knowing ahead of time what to expect will make it easier for you to begin planning now for how to give the best care you can for your partner.
Important Steps After Learning Your Partner Has Dementia
Accepting the Diagnosis
One of the hardest parts of caring for a partner who has received a diagnosis of a dementia-related disease is acceptance.
Dementia-related diseases like Alzheimer’s have no cure and are progressive, meaning that the symptoms of the disease will become more pronounced over time. It is normal to experience a wide range of emotions after such a diagnosis, and you shouldn’t feel guilty for experiencing them.
Yes, it is your spouse who has received the diagnosis, not you, but when your partner has been diagnosed with one of these conditions, no one other than your partner will be impacted more by their condition than you.
The most important step after their diagnosis is to accept that your partnership will now have to change. The equal sharing of responsibilities that may have characterized your previous relationship will not be sustainable and you will have to eventually assume all of the responsibilities that you two once shared.
Your relationship with your partner will come to resemble a parent-child relationship more than anything else, as your partner’s disease progresses and their cognitive functions decline. Accepting this early is the best way to prepare and manage the changes that are to come.
Understanding the particulars of your partner’s disease is important, as not all diseases progress the same. You will play the most important role in the care of your partner, so educating yourself on their current and future needs is vital.
Seek out help and guidance from dementia care counselors, books, and psychologists who can adequately prepare you for the role you will now have to assume.
Engaging With Your Partner
Some of the most pronounced effects of dementia-related diseases are social in nature. How you have interacted with your partner for years, even decades will change rather quickly as their disease progresses.
Dementia-related diseases will begin to break down the walls we normally build in our minds between the present and the past, so your partner may start carrying on conversations with friends and family who may have died many years ago.
This can be trying at times, but it does no good to try to convince them that the conversation isn’t happening because, for them, it is. Trying to “dispel” this reality for your partner will only lead to their becoming confused and angry.
You may also find that your spouse’s personality has changed and they start to act differently than the person you knew. This can be the most painful part of caring for someone with a dementia-related disease, as it can feel at times like the person you love has been taken from you.
It is okay to grieve this sense of loss, but try to remember that your partner isn’t doing this to spite you and cannot be made to “cut it out.” This is a symptom of their disease, and like any other symptom it needs to be understood and properly managed.
Establish Routines and Include Your Partner in Decisions Whenever Possible
Including your partner in decision making, where appropriate, can go a long way in getting them to accept and follow procedures, take their medications, and follow your guidance during daily activities. If they have ownership of the choice in their own minds, it will make compliance that much easier for you.
Routines are also important as regular activities that become habitual in your partner are more likely to be retained as their disease progresses, since habits are stored in the brain differently than normal memories, which could succumb rather quickly to the progression of your partners disease.
Build a Support System
It is important not to over extend yourself when caring for your partner. Yes, you will be their primary caregiver, but you cannot do everything, nor should you. Involve family and friends that can help you care for your partner.
Caring for your partner at this stage of their life can be a long process, and it’s normal to experience things like depression and grief, as well as pain, stress, and exhaustion. Having a support network you can rely upon to help you is essential to giving your partner the care that they need.
Take Care of Yourself Too
This is probably the most important part of being a caregiver to someone with a dementia-related disease, and it is often the most neglected.
It isn’t selfish to take time to care for yourself when being a caregiver to your partner, it’s essential. The prolonged stress of caring for your partner can be managed, but only if you give yourself the space to do so. Not doing so can lead to emotional distress, which is a dangerous place for you to be in as a caregiver, both for you and your partner.
Allow yourself the time to relax and socialize with friends and family. Engaging in hobbies, going to the movies, and even simply reading in peace can provide a much needed break from the external demands being placed on you.
Don’t Hesitate to Seek Professional Help if You Need It
The time may come when the demands of caring for your partner may become more than you can handle. As their disease progresses, this will become more and more likely as their sleep patterns become irregular and their cognitive capacity diminishes even further.
Professional home care is often the best way to help your partner remain safe during this time and can supplement or even take over the primary responsibility for your partners care.
If your partner has been diagnosed with a dementia-related disease, we encourage you to reach out and speak with one of our specialists to see what services might be available to help you manage your partner’s care. This can help you make the right decisions for your loved one’s care in a safe, effective way so you can cherish the time you have left with your partner.