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From the very beginnings of my dealings with caregiving for my grandmother and mother through there battle with Alzheimer's I had thousands of questions. At the time there was limited resources to find answers or seek advice on what to do and if what was going on was considered a normal progression for disease. Many of these answers were through various medical practitioners and through support groups. Now with the increased availability of technologies and the world wide web answers to the many questions is more accessible.
Below is some actual questions and answers provided at various groups or meetings BUT I have included a link to a really helpful public service of the American Health Assistance Foundation ... ASK AN EXPERT ... which should also help those looking for answers ... CLICK HERE
"I'm tired of looking after my husband. He's got dementia and he's driving me crazy too. I want to keep him home, but I get so angry it scares me. What can I do to help myself and him?"
First, take an honest look at your anger issues around being a caregiver. If you have continuous responsibility for a person with Alzheimer's, you probably get very tired, lonely, and fed up from time to time. Under such circumstances small irritations can lead to feeling a great deal of anger.
Since it's your husband who has Alzheimer's, you may have feelings of anger that are really connected with your sense of loss. Perhaps you feel that his illness has stolen what was once yours, as well as stealing away your future dreams of having a good retirement together. It's natural to feel angry toward a partner who can no longer fulfill the balancing role you once appreciated.
I hope you are attending a regular support group and that you will also consider going into therapy to explore deepest feelings and learn how to cope. Stress management and a care plan for yourself that includes exercise (a great stress reducer) as well as making sure you follow a good diet.
"I took my grandmother, who has dementia, out for a walk last week. We were walking across the grass when the sprinklers went on. Well, you should have heard her yell! I thought she was going to have a heart attack. What was going on?"
Your grandmother was having a "catastrophic reaction."
This means over-reaction to an event or stimulus, either in the form of anger, fear, anxiety, grief, or some other emotionally powerful way. This reaction probably happened because your grandmother no longer cognitively knows that water will come rushing out of a sprinkler and the sudden event frightened her. She did not understand what was going on, why the water was pouring out, or what she should do about it. In other situations, over-reaction may arise because the person with Alzheimer's misinterprets a situation.
"My dad may have Alzheimer's. we can't get him to the doctor, and meanwhile we're all scared to death about him driving. Should we stop him? If so, how? I know he won't want to give up his independence."
Undoubtedly he shouldn't be driving. No one with dementia should be driving. Most states require doctors to report patients with dementia so their licenses can be pulled. Of course, everyone knows how important it is to be free to drive. It is often the biggest factor in keeping a sense of independence in an older person like your father. In a way, to lose his car is to lose his ability to manage his life. However, recent research reveals that about 40 % of people diagnosed with dementia had a road accident or caused one in the six months before diagnosis.
Think how you'd feel if your father caused someone's death with his bad driving. And, if someone with Alzheimer's has any trauma, such as a car accident, it invariably brings about a decline in general ability to manage and a further step down in the course of the disease. Therefore, it is not the kindness it may seem to let your father continue driving until the inevitable accident. Get his doctor's help in stopping him from driving.
Be sure to put an alternative transportation plan into effect immediately so he can still get around.
"My doctor wants me to put my husband on a low cholesterol diet. Bill loves to eat. Why shouldn't he enjoy his food?"
From a medical stand point, the person with Alzheimer's needs to be under the continual supervision of a qualified medical doctor in order to stay in the best overall health possible. Poor overall health is associated with greater symptoms of Alzheimer's, so maintaining healthy habits may reduce symptoms. We need to ask ourselves what we are saving people for - so they can "DO" good Alzheimer's disease? You may simply consider it not worth the struggle.
In my non-medical opinion, as long as a person with Alzheimer's is not grossly overweight or diabetic, rigid diets are not as important as they once might have been. Putting a person who already has a terminal and profoundly limiting illness on a healthier diet seems somewhat irrelevant. In my case as a caregiver this was more relevent in the final stages of my mothers story, She loved ice cream had had major difficulties with swallowing. She was at that time also heavily medicated. In my mind, it was a case of I just want her to be comfortable and happy.
So ... I'm with you on this one, particularly as the illness progresses
"Why is it always me who has to look after my mother? I have brothers and sisters, but you'd think I was an only child when it comes to taking care of our mother."
It's probably you because you let it be. Families often quietly designate one member to do the caregiving. There is no pattern to this designation. Sometimes it will be an unmarried daughter, or more rarely an unmarried son. However, it may also be one particular family member, whether married or not, with children or not. The choice is obviously connected with previously assumed family roles. Perhaps you volunteered in the past to carry out caregiving roles. Perhaps you just did not resist being put in the role.
It's time to tell everyone how you want things to be different. As you express clearly what you need, you may find others taking up more helpful roles, but you have to be specific about what you want for yourself, about the time you want, about the exact nature of the help you need. It is also possible that your brothers and sisters are in a different situation than yourself.
This was the case in our family. Every family where there is a need for a caregiver needs to communicate and let each other know that you need help. My advise, Talk to them, calmly and matter of factly. Your mother is also their mother and have the same feelings towards her.
"My mother has Alzheimer's. She used to prepare the family meals and wants to help still, but I am concerned because she often tries to use the kitchen knives to cut things and holds the knife by the blade. I'm concerned that she will cut herself badly but when I try to intervene she gets angry. what can I do to stop her."
I had a similar situation to this (and many conflicts). I decided that the easiest solution was to let her help. My solution was actually pretty simple.
I took the knives and made the blades completely square with the grinding wheel, then placed the knives back into the wooden block they had been stored in for years. A new set was kept in the drawer which I used. When my mother wanted to help I gave her a tomato and let her squash them with the knife, then cleaned it up by scraping the board into a saucepan and saying "thank you for the help why dont you sit in this chair and relax while I finish up."
Finding a solution isnt always easy but after a while many caregivers find creative ways to distract or get around the problem. What I am suggesting is that in most cases it is easier to distract or do something different than risk creating an problem behaviour or an espisode that stresses everyone.
My 81-year-old mother is in stage five of Alzheimer’s disease. Today she woke up totally lucid, very agitated, and paranoid. She was able to remember conversations we had one week ago, but normally her retention span is less than five minutes. She asked for her cell phone, address book, and car keys and is driving herself back to Florida. We are in shock and are anxious to see what happens tomorrow. Is this normal for an Alzheimer's patient?
Temporary episodes of lucidity can sometimes occur in Alzheimer's disease. Because of the nature of Alzheimer's disease, a patient may have brief moments of clarity interspersed amongst long periods of confusion and forgetfulness. Agitation and paranoia are also commonly seen in the mid-stages of the disease, which is consistent with the stage your mother is currently in. Alzheimer's disease is a day-by-day disease, because every day can bring something new to the table. Your mother’s memory and agitation may be increased today (or even this week), but may be gone in a day or two.
However, if her agitation and paranoia seem to persist, you should consider contacting her physician for an evaluation. She may, for example, be suffering from an infection or have a pain that she cannot relay to you; the discomfort or pain may be disturbing enough to affect her behavior. A doctor’s examination could therefore help to rule out medical causes for her change in behavior.
If no medical condition is found to be the culprit, then anti-anxiety medications might be of help to reduce her agitation. You can also try to determine if there is an environmental reason for her change in behavior. Is there someone new living with you? Have there been any significant changes to her daily routine, such as when/where/what she eats, where she sleeps, where she goes, who she visits, etc.? Sometimes seemingly insignificant changes to the routine of a person suffering from Alzheimer’s disease can greatly impact his or her behavior. If the agitation continues, try to do a little detective work to determine whether something in her general environment may be disturbing her. Then, if possible, try to remove or limit these factors.
I take care of a lady who has dementia due to a stroke. She puts anything and everything in her mouth and it is just getting worse. Is there any way to stop this?
Mouthing non-food objects has been reported in patients with Alzheimer's disease (AD) and with frontotemporal dementia (FTD), but unfortunately there does not seem to be any way to stop the behavior.
Some suggest the reason that dementia patients put everything in their mouths is because they are fulfilling a basic need, such as suckling, or else they have heightened oral sensitivity. Sucking on something may be soothing to the lady, much the same as sucking on a pacifier is soothing to an infant. Others suggest that the patient may be doing it out of boredom or else because they can no longer discriminate between food and non-food items.
Because there is no way to prevent the behavior, you only option is to try to safeguard the lady’s home environment against possible choking or poison hazards. If she is in a care facility, then she may require more supervision or more frequent checks. This will be a challenge, but it is necessary to ensure her safety.
The best you can hope for is that this phase will pass and soon she will go back to not putting everything in her mouth. You can also try giving her a few safe items that she can mouth. Teething toys used for babies might be one option (make sure you regularly clean/sanitize the items). They might keep her satisfied enough that she may not feel compelled to mouth other items.
My mother-in-law was diagnosed with Alzheimer's disease about four weeks ago. We had noticed that she was becoming more forgetful about six months ago. For example, she did not know her son; she kept asking him when her son would arrive. She now always wants to "go home" every day and night. She picks up a few clothes, maybe some papers, and she waits for someone to take her home. She is at home and has been in the same house for over 50 years. She gets really angry when we tell her she is home, and says that she would never have lived in "this house." We have changed the locks on the doors; they can only be opened with a key now. My mother-in-law has a sitter during the day and one of her children stays with her at night. What can we do?
Asking to return home is a common theme among Alzheimer’s patients. Often this stems from a desire to be somewhere where the patient felt needed and safe, such as a childhood home or a home in which they raised a family. In this case you can ask your mother-in-law to tell you about her home and what she likes best about it, what she misses most, or who might be waiting for her there. If you try to discern the underlying emotion in her stories (fear, loneliness, frustration), this might provide you with a clue about why she keeps asking to go home. Then reassure her that she is loved, that she is not a burden, and that she will be well cared for. Finally, try to redirect her attention to another topic or activity that she enjoys. (see also Problem Behaviour - Wanting to 'Go Home')
When or if it becomes time for my loved one to move to a care facility, is there some kind of "buddy system" I could arrange for in advance? For example, it would be wonderful if someone could take him under their wing for the first few weeks; they could be close to him and help him to become acclimated. In general, they would function as an on-site friend. Otherwise, I know in my heart he'll be frightened, distraught, confused, angry, and rebellious from being left alone and being taken away from the "comforts of home."
Many facilities do encourage a “buddy system,” whereby each new resident is paired with a companion resident for meals and activities. This helps to ease the transition into a new living environment and can aide in lessening anxiety and making a new resident feel more at home sooner. It would certainly be something to ask about when you are choosing a care facility for your loved one.
A professional, compassionate facility should be willing to at least try a buddy system for your loved one, even if they do not currently have such a system in place. Alternatively, some facilities may allow a family member or friend to stay with the incoming resident at the facility for a few days until the resident becomes settled in. This would be something else to inquire about when interviewing potential care facilities, assuming of course that this arrangement is something you are willing and able to do.
My dad is 78 years old and is in the early stages of Alzheimer’s disease. He sleeps most of the day, and says that he has pressure on his head, is unable to think clearly, and cannot pick his head up off the pillow. Are these common symptoms of this disease?
Headaches, including migraines, are reported by patients with Alzheimer’s disease but whether the rate is greater than among patients who do not have this neurological disorder has not been determined. Although the accepted answer to this question is that there is no established connection between Alzheimer’s and headaches, some researchers have found increased headache prevalence among people who have a particular familial Alzheimer’s disease gene, called PSEN1.
Possible explanations for headaches in Alzheimer’s patients include cerebral inflammation, issues with blood pressure, vision problems, and medication side effects, each of which can be treatable causes of headaches.
THE CAREGIVER ROLE
What is a Caregiver
The Caregiver Defined
Who Do Caregivers Care For
Accepting the Reality of Dementia
6 Steps to Successful Caregiving
Caregiver's Are Not Alone
Asking For & Getting Help
The Caregiver Code
Rights of a Caregiver
Unmet Needs Of A Caregiver
Caregiver And Work
Feelings And Caregiver Stress
Questions & Answers
STRESS, COPING & FEELINGS
The Caregiver Code
Rights of The Caregiver
Coping With Stress
Feelings And Caregiver Stress
Stages Of Alzheimer's
Helping Children Understand
Protecting Yourself From Burnout
Making Time For Reflection
How is Competency Defined?
Power of Attorney
What is an Advanced Directive?
Do I Really Need a Will or a Trust?
Importance of Communication
Communicating With Someone Who Has Alzheimer's
Your Approach Sets The Tone
Think Before You Speak
Doing Tasks Together
Having Trouble Being Understood
Keeping a Dementia Journal
Making Caregiving Easier - Caregiver Notebook
Things NOT To Do
When It Just Fails
TIPS AND ISSUES
New To Family Caregiving?
Tips For Dealing with Aggression
Places To Turn For Caregiver Supoort
Take Advantage of Community Support
Random Tips From Other Caregivers
Providing Long Distance Care
When To Stop Driving
Dealing With Family Conflict
Tips on Sundowning
Ways to Reduce Sundowning Challenges (part A)
Ways to Reduce Sundowning Challenges (part B)
Helping Children Understand
Pet & Toy Therapy
Getting Someone to Take Medications
Tips For Medical Appointments
Dealing With Resistance
Tips For Day To Day
Intimacy And Sexuality
Visiting A Person With Dementia
Music And Dementia
Tips For Holidays And Gatherings
Art as Home Therapy
RESEARCH & DONATIONS