Part I of this series covered the emotions you might experience when putting a spouse into memory care.
When your spouse moves out of the home you’ve shared and into memory care, you’ll need to work on building a new relationship, one that may not be the same as the one you’ve grown used to, but can still give you a connection to your life partner.
You may find that your spouse no longer knows who you are. As heartbreaking as that is, they likely can still recognize you as an important person in their life. Don’t worry too much about convincing them of who you are, as this will likely only lead to frustration. Regardless of whether they know you as you, you’re still important. You’re probably the one they see most often, and they know that you care about them a great deal. It may be hard to accept, but know that that might be the highest honor your spouse can give you in their current state. Your visits, even if your spouse isn’t aware of them or doesn’t register their significance, are now the most important way of honoring your marriage.
It’s possible to find new ways of enjoying intimacy with each other. A good care facility should give you ways of having uninterrupted time alone. Furthermore, now that you no longer have the burden of being your spouse’s primary caregiver, you can focus on the relationship the two of you have. You can be there for them in other ways beyond taking care of basic functions. You may even find that this new focus on love itself, without day to day hassles, brings you even closer than you were before, and eliminates feelings of guilt and resentment.
Though it’s important to nurture your marriage, it is also crucial during this time that you care for yourself. While your spouse was still at home, you likely put off your own needs and desires, and now is the time to remedy that. Make sure that you address any of your own neglected health needs, both physical and mental. As you probably know, you can only help someone else if you help yourself first.
There is no cure for dementia, but despite this a move to memory care can result in healing for both of you. You may not only be caring for your loved one’s condition, but also for the health of your relationship.
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We all agree that marriages that have lasted decades are precious. These couples have come to know each other in ways so intimate that their other relationships pale in comparison. When one half is diagnosed with dementia and moving to a memory care facility becomes necessary, the separation is of course heartbreaking. Though there may in part be some relief on the part of the spouse who was serving as a caregiver, such a drastic life change requires much strength and bravery from both.
This change often comes quite suddenly, and can be overwhelming. Possibly it was precipitated by an emergency hospital visit or a frightening incident at home. Indeed, this may be the most difficult challenge a couple’s relationship has ever faced. The most crucial time is the first few months, as they enter into new and unknown territory.
The following are common emotions and experiences you may have during this time:
/by Moti Gamburd- A sense of loss of control as you are no longer responsible for your spouse’s day to day care
- Struggles with how to handle a sudden increase in free time and an empty home
- Guilt at being unable to continue to care for your spouse at home
- Anger and despair that the life you shared, and your closest friend, is gone
- Fear about what the future may hold
- Second guessing the decision you’ve made
For most of us, mealtimes are a chance to enjoy some good food and take a welcome break. But for some dementia patients, eating is a stressful experience. Why do they resist what was once such a favorite aspect of life? Are they simply “being difficult?”
There are a number of underlying causes that may result in a dementia patient not eating or eating with difficulty:
Cognitive problems. Dementia patients may have trouble with being able to distinguish the food from the plate, or may have trouble with using utensils. They may also forget to eat or to continue to eat, even if they’re sitting at the table!
Psychological problems. Few of us have much of an appetite when we’re depressed, and unfortunately this is a common problem for dementia patients. It’s also possible that your loved one may be too restless to sit down for meals.
Physical problems. It may be that your loved one is too tired to eat. They may also have sores or other problems in their mouth that make eating painful. The fit of dentures is something else to consider, as is physical difficulty with using utensils or trouble with chewing or swallowing.
Environmental problems. Too much confusion at mealtimes could make it difficult for your loved one to focus on eating. A room that’s the wrong temperature, has bad lighting, or an unpleasant smell may also make your loved one too uncomfortable to enjoy their meal.
Problems with the food itself. Dementia patients can easily be overwhelmed if there are too many possible choices on the menu. Food that is unappetizing in some way may also make them reluctant to eat. Or it could be that something about the food makes it difficult to handle.
Medication or other illnesses affecting appetite. Some medicines, or the way the medicines are interacting with the food, might kill your loved one’s appetite and cause them to be uninterested in mealtimes. Similarly, some chronic diseases can also decrease the desire for food.
If your parent isn’t eating, the first thing you should do is to take the time to simply observe them during a meal. Watch closely to determine where the problem starts. You may want to eat at the same time, so that you can think about all the steps involved in eating that you normally take for granted. This may be enough for you to diagnose the problem, or you will at least be better prepared to approach your loved one’s doctor about the issue.
By understanding why your loved one might not be eating, you can ultimately make sure that they get the nutrients they need.
/by Moti GamburdIf your parent has just been diagnosed with Alzheimer’s disease, it’s a confusing time for your family. One important item to add to your to-do list is to plan to have a talk with your parent’s doctor about their condition. Below are four important questions you’ll want to make sure you include.
Keep in mind that in order to have this conversation, your parent will need to let the doctor’s office know that you have permission to discuss their health matters.
1. Why have you chosen a diagnosis of Alzheimer’s, rather than another disease?
This question will help you better understand your parent’s illness. It can also be valuable in cases where family members or your parent wants to deny that they have the disease. Find out what signs demonstrate to the doctor that this is Alzheimer’s and not another disease or another form of dementia. You’ll also want to ask how your parent’s symptoms differ from the normal forgetfulness and confusion that can come with aging.
2. What medication is available that might help?
Prescription medication is available that can help slow the progress of the disease or alleviate symptoms. However, not all patients respond to these aids, and the doctor may not think any of them are appropriate for your parent’s particular situation. Also know that at this point there is nothing that can be done to reverse the progress of the disease or to cure your parent.
If the doctor does recommend medication, ask how it works and how it treats particular symptoms. Also make sure you understand the side effects, and what to do if your parent takes the medicine incorrectly or misses a dose. The doctor may be able to offer suggestions about how to make it easier for your parent to keep track of their drug regimine.
If you or your parent is thinking about trying herbal remedies, be sure to include these in the conversation as well. The doctor may be able to share information with you that you haven’t previously considered, such as the latest research. He or she can also let you know if herbal remedies would be wise for your parent’s individual situation. For example, there may be harmful interactions with the medicine your parent is currently taking.
3. Are there clinical trials we can participate in?
By participating in research studies on new treatments, your parent may be able to receive cutting-edge care for free. However, these arrangements are not without risks. Your parent’s doctor can help you determine whether volunteering in clinical trials would be a good idea.
4. How can I reach you if I need you?
This may be the first time you’ve had any conversation with your parent’s doctor. Make sure you know the office’s procedures for getting in touch with the doctor. Does he or she take questions over email? What should you do if your parent is having a medical emergency and the office is closed? Having the answers to these questions can ease your mind greatly and help you prepare for the unexpected.
/by Moti GamburdOne of the most tragic aspects of dementia is watching a person who you once knew to be capable, independent, and thriving now have difficulty with basic tasks and revert to a childlike state. There’s often great pain as your loved one knows that they’re regressing but is unable to regain the abilities of their younger self. It may seem like this decline is out of anyone’s control, but there are some ways that you can help to lessen its sting.
First, pay attention to how you’re speaking to your loved one. There’s a tendency for us to talk down to the elderly and treat them like children. Are you being condescending? It may help to separate the person’s illness, which may result in strange and childlike behavior, from who they are essentially as a person. Mom is still there behind her dementia, and you want to honor her. Also think about your vocabulary. Are you using words that you might use with a child but not when talking to your loved one before the onset of dementia? Try calling adult diapers underwear or the “potty” the bathroom or whatever your loved one has always called it.
In conversations, avoid putting your loved one on the spot by asking questions they may not be able to answer. Try to stay away from facts that can be wrong or right, and instead ask how they feel about something. For example, if someone who doesn’t know your mother asks her how many grandchildren she has, redirect the conversation by getting her to talk about how much she loves them instead.
Many caregivers strategically use what they call “therapeutic fibbing” to help their loved ones. For example, dad insists he wants get in his old boat and go fishing by himself the way he used to. Don’t tell him he’s not capable of going out on the water on his own and his boat has been sold anyway, as this will likely make him feel upset and depressed. Instead, you can tell him today’s not a good day because there might be a thunderstorm coming, or that the boat’s engine needs to be repaired.
Each and every one of us needs respect and to feel important. Try to encourage and reassure your loved one that they have value as much as you can, and speak with other family members about doing the same. Your loved one may no longer be the exact same person they once were, but with a little cooperation and assistance from those around them, you can minimize embarrassing situations and despair.
/by Moti GamburdSundowner’s Syndrome, or sundowning, is when a dementia patient becomes more fearful, agitated, or depressed around sunset. At this time of day, caregivers will notice that their loved one’s illness becomes even worse as they become more confused, anxious, and have trouble communicating.
Though these episodes can be difficult to deal with, there are a number of things that you can do to lessen their effects.
1. Be calm and try not to startle your loved one. Avoid yelling or challenging them. If mom says something that doesn’t make sense at dinner, it might be a good time to let the bizarre statement go.
2. Keep the curtains drawn, so that your loved one doesn’t notice that it’s getting dark outside. Turn on the lights and try to make the inside atmosphere bright, peaceful, and cheerful. Ask others to keep the noise down.
3. Make sure that your loved one is active during the day, so that they’ll be tired in the evening. If they’re napping or sitting around, they’ll be more wakeful at night.
4. It’s a good idea to plan activities in the evening as well that can serve as a distraction.
5. Stick to a routine, as this will make your loved on less anxious. Even simple actions, like going to bed at the same time each night or watching TV together can help create a sense of familiarity.
6. Try playing soothing music, which can have a remarkable effect on creating a calm atmosphere.
7. Have locks or other safety devices installed, so that you don’t need to worry about your loved one wandering and hurting themselves. You might consider making a safe area where they can move around even when you’re not awake to keep an eye on them.
8. Ask your loved one where they would prefer to sleep. If it’s on the recliner in the living room or in a different bedroom, changing sleeping arrangements to accommodate them might help. Being comfortable will help ease their anxiety.
9. Buy nightlights to use in your loved one’s room or other areas, as lessening the darkness will make them less nervous.
10. Be reassuring. Sometimes it will help your loved one just to hear from you that everything is OK.
The evening doesn’t have to be an unpleasant time for you or your loved one. The simple changes above can help the night pass more smoothly for both of you.
/by Moti GamburdAn Alzheimer’s diagnosis can be isolating, both for the person with the illness and for their caregivers. Illness can often create distance between those who were once close, and the nature of Alzheimer’s disease compounds the problem. Others are unsure if the person will remember them or if they’ll behave inappropriately. Still others may remain in the person’s life, but not acknowledge the disease at all, and thus leave a big silence about a major life event. Many people who suspect they have Alzheimer’s avoid an official diagnosis because they fear the effects on their social world and the painful feelings of rejection and loneliness that would come with it.
However, it is vital that patients get a diagnosis so that they can receive proper care. If someone close to you is going through this important turning point, here’s how you can help.
Listen before judging. A time like this is ripe for family conflict. Should the person get diagnosed and when? If they do have Alzheimer’s, how will the family plan for the future? It may be that the Alzheimer’s patient has disagreements with the rest of the family, or people within the family are fighting among each other. You will have your own opinion on the issues at hand, but make sure you’re hearing out the other side and giving their point of view fair and compassionate consideration. Hold back on stating your viewpoint and ask others for theirs first, to make sure they have a chance to give input. A third-party mediator may be able to help if you worry that conflict will get out of control.
Be supportive. One of the best things you can do for your loved one is to help them think through all the choices they have to make at this time. This may require you to keep your own emotions in check at a time when you might be feeling a lot of fear, so it may not be easy. Keep in mind that your loved one will likely be afraid of seeming to be needy or a worry-wart. Encourage them to talk through their concerns rather than keeping them private.
Stay calm. At this time it’s very important to be patient, and not all of us count this as one of our strengths. But keeping your cool can go a long way towards maintaining a positive relationship with your loved one that will keep them open to your much-needed help. Remember that pointing out that you were right or expressing negativity may not be the most productive course of action. Put a focus on keeping a good relationship.
Using these skills will put you in a position not only to support your loved one, but also help you bridge the gap between them and family and friends. You can play an important role in keeping the peace.
/by Moti GamburdOne of the more unnerving side effects of dementia are the delusions and hallucinations these patients sometimes suffer. They can leave the patient very troubled and scared, yet they’re difficult for loved ones to address because they know these illusions aren’t real. Around 25% to 40% of dementia patients experience these episodes. They will often respond with agitation, aggression, or even violence. This behavior may be more threatening and troubling as the disease advances, as patients are more likely to respond to what’s going on in their minds.
Your initial instinct might be to try to reassure your loved one that what they’re seeing isn’t real. But this is often a mistake. The patient can easily get the perception that you don’t take them and what they’re seeing and feeling seriously. Rather than being comforted, they may feel isolated and hurt.
Instead, what you’ll want to do is offer some acceptance to their reality. No, you don’t have to believe that mom’s long-dead sister is in the room with you, but you should understand that the experience is real for your mother. If you do this, you’ll bring stability to the situation much more quickly than if you tried to fight them on what they’re perceiving. Be reassuring: “You must feel frightened. I would be frightened too. But I will stay here with you to make sure you’re safe.” It may also help to offer some form of physical comfort, such as a touch on the arm. No only does this reinforce that you are there for them, but also helps draw their attention towards you and away from what’s bothering them. You can also help make the problem vanish by getting your loved one to a different environment like another room or outside for a little fresh air.
Some hallucinations might be comforting. Dad may be imagining that he hears birds pleasantly tweeting. If he seems to be happy about this, you may not want to disrupt this at all. You only really need to worry if what your loved one is perceiving puts them or others in some kind of danger.
Unfortunately, you won’t always be so lucky and there isn’t much you can do to prevent these incidents. Medication may help, but it may have side effects that bring new problems. Understand that feeling distressed and overwhelmed in these situations is normal. By learning all you can about this effect of dementia, you can help yourself to cope with it more effectively.
/by Moti GamburdHow memory loss in Alzheimer’s patients works may at first seem mysterious to those whose loved one’s are suffering from the disease. The senior can tell stories about their childhood, but doesn’t remember that they had lunch just a half hour ago. It just doesn’t seem to make sense.
First, it may be helpful to learn a little bit about the nature of memory. When a person who does not have Alzheimer’s undergoes an experience or learns a piece of information, a part of the brain called the hippocampus plays a role in taking in that new tidbit. However, in Alzheimer’s patients the hippocampus is one part that suffers first, thus preventing new memories from registering properly. Also, memories that have an emotional component to them are stored separately from other memories. This may explain why dad can’t remember what he did with his glasses, but can talk about his service during the Korean War.
As the disease advances, even older memories stored elsewhere in the brain begin to disintegrate. Also, plaque builds up in the nerve cells in the brain, which may lead to disorganized thinking or confusion.
Unfortunately, there is nothing we can do yet to stop this process. However, you can help a loved one with Alzheimer’s by sticking to a routine. The regular schedule will help them be more comfortable and feel less confused. Also try to reduce the amount of extra stimulation, such as noise, that the patient is subjected to. All the additional activity can contribute to disorientation.
It can be very stressful for caregivers to watch their loved one lose their memories, especially their most-cherished ones. During this time, be sure to take care of yourself. Seek out friends and family who can give you support. Caregivers can too easily feel alone and shut themselves in their own worlds. Don’t let this happen to you.
You might find it helpful to learn as much about Alzheimer’s as you can, so that you know what to expect. Never take your loved one’s forgetfulness personally: it is the disease that is causing your dear Aunt Judy to forget your name, not any lack of love on her part. And finally, choose to make light of the situation as much as you possibly can. Yes, the pain will still be there, but if you can laugh about the effects of the disease, you can manage to ease the negativity you may be feeling.
/by Moti GamburdIf you or a loved one has recently been diagnosed with Alzheimer’s disease, you probably have a lot of questions. This article is intended to address some of the most basic facts and get you started in the learning process.
Alzheimer’s disease, which is the most common form of dementia, is a problem with the brain and affects a patient’s behavior, thought processes, and memory. The symptoms are fairly minor to start, and then gradually get worse to the point where they drastically affect the individual’s everyday life and they need other people to help them complete even basic functions.
There are several million people in the US who have Alzheimer’s disease. It usually starts sometime after 65 years of age, and becomes more likely the older a person gets. Among those people older than 85, some estimate that half have Alzheimer’s.
One of the first signs of Alzheimer’s disease is problems with thinking skills, especially memory, and behavior alterations. The person may be moody, restless, or confused. They may display uncharacteristically poor judgment or have trouble processing visual information. They may also experience difficulties communicating and using language. Alzheimer’s can be difficult to diagnose because its symptoms can easily seem like the normal effects of aging. The disease is frequently ignored in the early stages.
How can you know the difference? When you see the doctor for a diagnosis, he or she will run a variety of tests designed to measure cognitive functioning and behavior. The only way anyone can know for sure that a person has Alzheimer’s, though, is to see if there is plaque in their brain tissue. This usually isn’t possible until after the patient has passed away and an autopsy is performed.
The disease may take anywhere from around 5 to 20 years to run its course. Because it damages the brain, it can cause a person to have trouble with basic physical functions such as swallowing, which can in turn lead to death. Alzheimer’s patients are also more likely to get an infection.
As of yet, no cure has been found for Alzheimer’s disease, but there are treatments available that can lessen some of the negative effects of the disease on patients and caregivers, as well as slow its progression.
To learn more about this disease, see the articles below:
How to Choose a Memory Care Facility
When Your Parent Forgets Who You Are
Three Big Questions to Consider After an Alzheimer’s Diagnosis
/by Moti GamburdCorporate Office / General Information
Raya’s Paradise, Inc.
1156 N Gardner St.
West Hollywood, CA 90046
Tel: (310) 289-8834
Fax: (323) 851-0375
E-mail:Info@RayasParadise.com