dementia

Coping with dementia. Learn about ways to deal with a family member who has dementia.

January 2012

Thoughts on having a parent with dementia who lives far away

2017-03-25T23:08:07-04:00January 27th, 2012|caregiving, dementia, Thoughts From A Psychotherapist|

I have written several well received blog posts on having a parent with dementia.  The more I talk to people, the more it becomes apparent just how many families struggle with this illness.  There are different struggles for different situations.  One of those is when you live far away from your parent with dementia.

When your family lives far away it can be very hard to tell what is really going on.  If your parent with dementia is living with a spouse, that person may be in denial or be trying to protect you from the suffering of your parent.  The caretaker may be fearful that it will be thought that they are not doing a good job as caregiver.  The person with dementia may be fearful of being put into a nursing home and beg the caregiver to protect them by not revealing the details of the illness.

On the other hand, if you are far away you may be in a situation where the caregiver is calling you all the time to complain and ask for things.  It can be even more challenging if you try to help and they refuse the help.   If you have siblings it can bring up old sibling conflicts as you try and work together or it may mean you aren’t able to work together at all.

So how can you deal with the stress of being far away?  My first suggestion is to acknowledge it.  Just because you are far away and do not see your parent in person often does not mean that their illness doesn’t affect you.  Secondly, you should negotiate how decisions will be made for the parent who is ill.  How can you talk to the caregiver?  When should you act and when do they want you to just listen?  When might you have to step in and take control even if it is against their wishes?  How is each sibling involved?  Thirdly, if they allow it you should be in contact with their medical provider.  The doctor can give you an unbiased account of what is going on medically for your parent.  Fourthly, there is almost always an Office of Aging in the community, make contact with them.  They will often go to the home and do a free assessment of your parent’s needs and evaluate what services your family might be eligible for.  They may even assign a case manager to help your family navigate services. 

There is a great book called “When it is Time”, which talks about how different families made the decisions on how to care for their elderly parents.  It gives some great advice and may help you feel less isolated in your experience.

Dealing with an aging and ill parent may be one of the most difficult struggles you experience in your life.  As always I urge you to do what you need to do to take care of yourself.  It is okay to think about yourself first sometimes. 

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October 2011

Dealing with a parent with Dementia

2017-03-25T23:08:08-04:00October 24th, 2011|caregiving, dementia, Thoughts From A Psychotherapist|

I recently wrote a post on dementia and how the journey of the caregiver is not talked about. Today I wanted to write about what the experience can be like for a child watching their parent who has dementia. Of course it is a difficult topic to write about since the journey can be so different day by day and even hour by hour. One day your parent may be totally lucid and appear as if nothing is wrong. Those are the days where you are hopeful that things may not as bad as you think. Than the next day the person who has dementia is confused and angry and you watch and grieve quietly as the person you knew is no longer in the body of person you love.

One of the most stunning parts of the dementia can be the personality changes. You have an outgoing friendly person turn into a withdrawn and uncommunicative person. Of course there are many types of dementia and it looks different in each person, but regardless of the type dementia there is a huge grieving process. You grieve when you get the diagnosis, you grieve when the person starts losing their capacities such as the ability to drive, you grieve the first time they forget your name, and you grieve when you look over at them and you see a totally different person from the one you remember.

You remember the person who took care of you as a child and see the person who no longer can do anything for themselves. You feel a constant and aching loss every time you see your parent who is both still your parent and another person at the same time. You want to spend time with your parent while you can, but at the same time it can be difficult to do so. If you become their caregiver you have to deal with the day to day stress of the disease. If your other parent or sibling is the caregiver you might be dealing with old family issues as you try to all cope with this. Different family members may see different things and want to deal with things in different ways. So along with the grief you may have to navigate difficult family challenges.

This is all about the negative aspects of the illness and family relationships. It isn’t always all bad. Family members may be able to come together and be closer than they had been before. Until the end stage of the illness you can have both good and bad days with your parent. Some personality changes can be positive. It certainly can shift your priorities and help you focus on what is really important.

As I have said before, if this is you and your family please ask for help. You can be surprised at how many people will come through for you. This is not a situation you can or should deal with alone.  Get support and take time for your self.  For it is a journey that will truly test your resources.

September 2011

Let’s Talk About the Reality of Dementia

2017-03-25T23:08:08-04:00September 23rd, 2011|caregiving, classics, dementia, Thoughts From A Psychotherapist|

The legendary Pat Summitt (Coach of the Tennessee Lady Volunteers womens basketball team) recently disclosed she has early onset Alzheimer’s dementia. She is 59 years old. Reporters asked other coaches and past players to comment and they invariably said things like she is tough and she will make it through. Pat Summitt is undoubtedly a very tough and accomplished woman whom I admire immensely (even if I haven’t forgiven Tennessee for beating Rutgers a few years back). But dementia is not cancer, and you cannot beat it. You can be brave as she has been and use your celebrity as an opportunity to educate people about a horrible illness, but inevitably Pat Summitt will cease to be the person we know her as. There is just no getting around it.

I understand that when reporters ask such questions people don’t want to say how difficult her life and the life of her family will eventually become. Their lives have now been changed in such a profound way that there are no words for it. Her family will watch this celebrated woman become confused and watch her personality change in ways that they cannot even imagine at this point. They will need to make decisions on how to best care for a woman who probably hasn’t asked for help much in her entire life. Does she live with her family or in a facility? Does she go to day treatment or does someone to come in and check on her? I hope the days are long before her family has to answer those questions. I also suspect that when things get bad Pat Summitt will disappear from public eye and we won’t hear much again until she passes away.  Her family will make that decision to protect her legend. It is the same decision I imagine I would make in those circumstances. But if we never see dementia sufferers or their families when the illness gets bad, how will we ever have any idea of what to expect if it happens in our family. Many of us who are now middle aged are going to face this struggle with our own parents. Perhaps we have already watched our parents go through it with their parents. It is estimated that 1 in 8 Americans over 65 gets dementia and half of those over 80 have it.

Yet do we ever really hear the caregivers talk about it? The toll it takes on them to care for a parent in one of the most difficult struggles that they will ever face. What it is like to take of the person who always took care of you, or even worse take care of the person who didn’t take care of you. The emotional toll is devastating, but caregivers often don’t talk about it because they may feel resentment, but not want to admit it. You can deeply love someone and still have feelings of anger, sadness, and frustration while you are taking care of them. Care giving is an emotionally charged and complicated position to be in. Yet we don’t talk about that part of it. Most of us don’t know what to say to someone going through it. A caregiver may not reach out because of guilt or just feeling so emotionally burdened that they cannot talk to others. Alzheimer’s causes a grief that can go on for years. You lose the parent numerous times before your parent is really gone.

I wish Pat Summit and her family all the best. I hope she has many years of coaching ahead of her. But I also hope as our country ages that we start talking about not just those who suffer from dementia, but their families too. Let us not just pretend that it gets better, because it doesn’t, but we can help people feel supported in their own struggles.

Please add your story to the comments.

 

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