Expert: Mary Gordon - 10/27/2008

Question
QUESTION: Hi Mary, I am 42 & my brother is 40.  He has 4 yr old twins & I have 2 kids aged 9 & 14.  My mom started getting symptoms of Alzheimers in 1998, 10 years ago, when she was 64.  I took a leave of absence from work in 2004 to move her in with me and look after her (there is no spouse in the picture).  My kids were 5 & 9 at that time. She later moved into a nursing home in 2004.  It took a toll on everything - a year later I lost my job and my marriage fell apart.  Compared to my mom's Alzheimers, though, recovering from everything else was a breeze.  I got a new job, and my relationship with my ex is great now.  But seeing my mom breaks my heart & I cry every time.  That is by far the most difficult pain I have ever experienced.  She has had 2 seizures lately, and the woman who used to walk around the nursing home constantly is now in a wheelchair & is crying and crying constantly.  My mom is from a family of 14 siblings.  2 died of Alzheimers & her younger sister has been diagnosed, & I really believe another younger sister also is showing symptoms.  I am trying to plan things (including my mom's investments), and my brother & I are taking a trip together after Xmas (first time with both of our kids), and I am getting nervous as I'm not sure how the disease goes from here.  I know no one knows for sure.  I've been told it could be days, weeks, months, years.  No one knows, and I know I must continue to live my life.  But she now can't walk, is incontinent (has been for a while), and sometimes she feeds herself, sometimes they feed her.  She is crying constantly and we don't know why.  Maybe that's the only emotion left that her brain knows of?  Maybe I'm looking for some kind of a forecast - I really don't know what to expect from here.  I read someone else's posting on here, and I read that I can expect more sleeping, less eating...I imagine most patients have the same kind of time range when they enter a particular cycle, but maybe not?

ANSWER: Hi Jayne,

I am surprised the facility isn't trying to do something to make your mother more comfortable - whether its trying an antidepressant, or exploring whether she is in physical pain. The goal for her should be the best possible quality of life, which means she should not be in any kind of distress. She should be as happy, and peaceful as possible. They should be trying to figure out what she needs to comfort her and make her feel better.

I know this is so, so hard to watch. As I've said to other people, its like a very slow death that goes on and on, without the closure of a funeral. You can't move on and deal with your grief when you are faced with the fact she lives on, and you are powerless to help her in any way. You can't bring her back to her old self, and you can't help her  to move on. You are stuck, as is she. With everything else that has happened in your life, no wonder you are so stressed. A person's mother is the one anchor who gives us that unconditional love and support - and with so much turmoil in your life, no wonder you are upset.

I wish there was something really comforting I could say. This is the brutal phase. As you have read, she will do less and less on her own. She will move less and less as the brain damage progresses. She will sleep more and more, and be more and more vacant when she is awake. She will stop feeding herself and even with careful hand feeding, she will start to lose weight. Because she is not moving, she will get more and more susceptible to bedsores and infections. Ultimately, no matter how good the care, she will shut down and spiral away.

My mother in law lived two years in the last stage, but she was extremely healthy other than her Alzheimer's, so there were no other illnesses to make her more fragile. She had no heart problems, no diabetes, none of the common ailments of old age that can tip the balance. If she hadn't had dementia, I'm sure she would have lived to be 90. It is particularly sad that your mother's dementia struck her so young. You really missed out on so much, and its unfair for both of you.

Have you talked to the facility and her doctors - and your brother - about end of life issues. It is a painful subject, I know, but now is the time to think about this. Are you ready for palliative care only? If she starts to loose weight, would you want tubes and IVs? If she gets sick, do you want her taken to hospital? If she develops a major infection that is life threatening, do you want her treated beyond comfort measures to keep her free from pain? If her breathing or heart stops, do you want her rescuscitated? Would you want her given oxygen? Painkillers? If they suspect a new major health issue has developed like a cancer, would you want her subjected to tests or treatments?

These are the things you have to think about now, so you can be prepared. These are not easy issues to deal with, and she is probably within a year or perhaps 18 months of death, so there will be crises coming. You are going to get phone calls asking what you want done.  Is it kinder to let her go, or pull her back from the brink to her steady decline.
Many decisions need to be made by you and your brother. Have you made instructions at the facility, such as "DNR" (Do Not Rescusitate) order. Did your mother leave a living will? Does the facility know the family preferences?  Have you pre-planned funeral arrangements ? Doing these things is hard, but it makes a difficult time much easier for all.

This end of life process, which obviously is a natural part of living, should be a time of peace and tranquility for your mom and for you and your mom and your "little" brother. This is a time when family members can express their love and caring, while quietly holding the hands of their loved one. If you make as many preparations and decisions prior to her final illness, it can make the final time one of peace and compassion - whether that happens in 6 months or 18.

In many places, to qualify for Medicare supported hospice care (which can be wonderfully supportive and compassionate for everyone involved), the person has to be losing weight, had a series of infections, and be no longer able to hold up their heads, with death expected within 6 months.

You need to request a frank care planning meeting with the facility, with her main doctor in attendance, and review all these things, including whether or not hospice is an option for her.  Here is a good article from a year ago that contains a number of good links to the
Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes that came out in August of 2007 and related information
http://www.nhpco.org/i4a/pages/Index.cfm?pageID=5293

Here is a link (also in the article) to the actual recommendations
http://www.alz.org/national/documents/brochure_DCPRphase3.pdf

Knowing that you have a plan may make the uncertainty easier to cope with. You should plan to take your trip. It's normal to want to do as much as you can to help and to feel guilty. Its also normal to feel frustrated, sad and even resentful (the whole thing is so crummy and unfair, you'd be made of stone if it didn't affect you that way). But you can't take good care of someone else if you don't take care of yourself, too. So take breaks when you need them. It's not selfish. It's essential. Get out to see friends. Eat right. And be sure to visit your own doctor for regular checkups. Most of all, accept that you can't do much now other than plan her care and love her. She's past the point where anything else really matters. Make time for you. You've been through a lot, and you need to be looking after yourself. A lot of people love you and need you, and I'm sure your mother would want you to be kind to yourself. Loving yourself is part of honoring her. She would be so, so sorry that you are hurting, and so, so proud of the caring person you are, and how hard you have tried.  lorryt

Talking to others is often a big stress reliever. Sometimes you just need someone to listen, preferably someone who has been through the same thing. A good option is joining a local support group for caregivers. Joining a support group can help you feel that you aren't alone. It's also reassuring to share thoughts and ideas with others who are going through the same things as you.

Believe me when I say, when we were going through the same thing with my mother in law, we sought every kind of help going. She was in the end stage for about two years, and the final downturn took about 6-8 weeks - which felt like an eternity at the time.  It was very stressful and depressing, and we felt horribly guilty about praying for the end for her.
Its just not like any other illness, is it?

I can say that her end was very quiet and peaceful and we have never regretted choosing  palliative care for her. We very strongly feel we did the right by her.  She died with my husband (her only child) holding her hand, and it was like the gentle going out of the tide - we truly think she was comfortable and not in any pain or distress. My feeling is that she was far away and at peace when her body finally failed. It was like the last strand as thin as spider web holding her to earth, and we were so, so glad she was free at last.  We also found hospice workers very, very kind. Their entire focus was making sure suffering was minimized and in looking after the whole family through the experience.

I know this is heartbreaking. In some ways its like things are backwards - you've done a lot of your grieving already. I'm thinking of you and hoping this helps a bit.

Mary G.

---------- FOLLOW-UP ----------

QUESTION: Hi Mary, I would just like to thank you for your very lengthy and detailed e-mail.  

The nursing home where my mom is has ordered an x-ray and we have taken my mom to the denturist (that will be the last time she is transported out of the facility).  They are trying to find out why she is crying all the time.  Another resident has also been crying for months & had all the testing, psycho-assessments & medications & it didn't help; they think some patients are some happy & some are sad - they really have done all they can & she is already on about 8 medications from anti-depressants to anti-psychotic med's.  My mom is already on DNR - she was a nurse herself before she got sick, and always told me "no heroics, just let me go".  In fact, she asked her friend, also a nurse, to just put a pill by her bedside if she ever had to go into a nursing home.  Very sad indeed. Mom is on a level 1 care - comfort measures only.  no hospital. No DNR, no tests or treatments. My mom's will & POA is in order (which is why I was able to act on the POA as it was a Continuing POA).  The facility knows all of our preferences. I am in the process of dealing with funeral arrangements actually.

We will take our trip.  I know my mom would want that.  I may get involved in a support group as I am finding this very difficult & my brother even cries when he sees her (something I have never seen except when he sees my mom).

Again, thank you for your response Mary, it really helped.  And also the links.  I will read these articles later on the train on the way home from work.

Answer
I'm so sorry you are going through this. You've certainly already done most of what needs doing, so you are as prepared as you can be.

I do remember what it was like. Many times I'd come to see my mother in law and find relatives outside her room crying, just completely unable to deal with what she'd been reduced to - particularly if they hadn't been in a while, and were shocked.

Eventually, most of them stopped visiting -  and in a way, that was hurtful to us too - although I totally understand the terrible conflicting emotions they were feeling. She didn't really react to them, so some were too upset to be able to figure out how to "visit" a person in her condition, so many avoided it.   

You might want to find a grief counsellor to talk through your sadness - grief isn't just about death - its about LOSS, and you certainly have been going through that. You've lost your mother, even though she is still alive. Its like being orphaned - you want your old relationship back. You want your mom!  Don't beat yourself up for feeling that way.  This has been like a long grinding marathon.

None of this is anyone's fault, and you are doing the best you can with what you have to work with - no one can do more than that. Give yourself a break. I have kids that are similar ages to yours (now 17, 14 and 10).  All four of their grandparents were gone by the time the youngest was just a toddler. It took me a long time to get over being furious with the cosmos for everything both the kids and their grandparents missed out on.

It might sound like a silly idea, but have you thought about making a "memory book" about the person she was? It might be a great project for you to share with your children. Write out her life story, where she lived, what she did, and bring her personality and experiences alive for them. Your children might love to  hear what she was like, did she like to cook, what were the holiday traditions, what she did as hobbies, and more importantly, what she did that influenced the person you became. We have one my husband made after his mother had died. He started with her eulogy but fleshed it out with pictures from different eras of her life, bits of memorabilia we found among her papers etc. Its really touching and sweet and funny -and I know it helped him to put it together as a tribute to her. I'm sure there are good memories of happy times you want your children to know about so they can get a glimpse of who she was.  

Just a thought. If nothing else, it might help you focus on the positives - the really lasting gifts she gave you.

Thinking of you

Mary G.