Expert: Mary Gordon - 11/9/2008

Question
QUESTION: I am trying to plan my future and my families future and and seeking a likely number of years that my wife might yet have to live.  I know this may be a broad range and that would be helpful as well.
Cornelia is now only 68 and in good health with the exception of the Alzheimer's.  She went on arocept for short term memory loss in 2001 and had noticeable loss of high level skills two year previously.  I would put her at stage 6 at this point.  She has a fair amount of urinary incontinence and some rectal incontinence.  She can feed her self but needs direction dressing and occasionally actual help when direction don't compute for her.  She knows that I her sole care giver is someone friendly and familiar and knows my name some of the time but has a hard time believing I am married to her.  She is still aware of who she knows and does not know but has few names.  She does not know what time of year it is nor where we are most of the time.  I have to lead her to the bathroom so that she can find it and sometimes must giver instructions as to how to use it.  It is difficult for her to find words for a sentence but still can sing.  The blessing is that she is still a faint image of her former self and is good to deal with.
I have a daughter who lives overseas and if requested would disrupt her life and relocate near home.  I am attempting to take care of my self and working to get breaks from being on demand 24/7.  I have a neighboring brother and sister-in-law who have successfully taken her to spend the day with them a couple of times in the last six weeks.  I am experimenting with other alternatives to allow choices. I am trying to keep my self phicialy, emotionally and fanatically alive.  Some sense of the future would help.  I am all so 68, miss my old wife who was my sole mate, I am in good health.
Thanks for what ever you can steer me to.
Henry

ANSWER: Hi Henry

My heart really goes out to you. Its particularly difficult to predict survival time in someone who is relatively young and healthy.

As I know you know, quite often people older than your wife have a constellation of health issues that become very difficult to manage as their Alzheimer's progress. They can't answer questions or describe symptoms, they can't cooperate with therapies, and  tests and treatments become traumatic. Most families reach a point where they decide that there is no point to put their loved one through any of it, and they opt for palliative care only. In the frail elderly, the combination of the Alzheimer's (itself a fatal illness) and all their health complications often leads to a much abbreviated lifespan - usually two years or less from the stage is where your wife is.  

In the case of your poor wife, she may well survive longer. My mother in law was very healthy physically although a decade older than your wife, and she lived two years in Stage 7. It was pretty miserable, as you can imagine. Your wife is likely to survive at least that long, unless she develops some health concern that could contribute to physical deterioration, and it may go beyond that. She's at least 9 years into this, and that is in itself longer than average, which is largely due to her youth and health.

I do understand your concern - you must be very stressed and feeling alone. You are looking at a steepening slope, and wondering how you will cope. You are very wise to be considering your alternatives, because the care from here on in does become very heavy physically (particularly when she loses her ability to walk and all continence), and more and more relentless, as she will be able to do less and less for herself.

Have you looked into adult daycare? There are some that will take people who are incontinent. You need to find ways to give yourself some days off each week, so you can look after yourself - go shopping, see the barber, go for a stroll, visit a friend, or even just get a few hours of uninterrupted rest. Its great that your brother is taking her occasionally. You could hire a "sitter" for her a day or two a week, so you can get out - or even one or two evenings so you can get out for some card playing, or a movie, or a dinner with a friend. You need some recreational breaks to look forward to. Even a caregiver support group might give you an opportunity to vent and blow off some steam. Many care facilities also offer respite care - you could check her in for a week or two, and take a holiday - go somewhere for a visit and recharge your batteries - maybe even visit your daughter.

Another alternative is to take as much domestic load off yourself by hiring a housekeeper or other supports to do the cleaning, shopping, laundry, yard work - all that "stuff" that might be adding to your stress to keep up with while you try to look after your wife. If you have a faith community, now might be the time to tap into volunteer assistance. Most people are reluctant and embarrassed to ask for help - but there is no shame in sending out the SOS. People can and do respond and are happy to feel useful.

I can understand your reluctance to disrupt your daughter's life. There isn't much point for her to come home until your wife is close to the end. In many places, you have the option of hospice.

In some states, the indicators they use to determine qualification (i.e. having less than 6 months to live)  include having lost the ability to walk, be losing weight, having repeated infections, and be no longer able to hold her head up. Hospice care is wonderfully supportive and kind, and I would highly recommend it, when her doctors feel she is entering the terminal phase - it would also be a much better option than bringing your daughter in to help with her care. Her real job is to love you and her mother.  

I hope you have seen a lawyer with knowledge of local laws and regulations, to make sure you understand what and when you may qualify for various supports and programs (i.e. if you are in the US, explore the local variations of medicare and medicaid rules. I know you don't want to consider it, but the day may come when you can't cope alone at home with her, and may have to consider a facility. For example, if you were to become ill - even just for a few weeks, like a dandy case of bronchitis, you might be unable to look after her, even if temporarily. You need to have your plan ready to go for the possibility of placement, whether short or longer term.

I would recommend contacting your local Alzheimer's Association
http://www.alz.org/index.asp
They can help steer you to supports and services where you live, including caregiver groups that you could attend. They can also be a great source of ideas and tips.

Here is a good overview of looking after someone in the later stages.
http://www.helpguide.org/elder/alzheimers_disease_dementia_caring_final_stage.ht

Hope this helps. Neither of you deserved this, and you have both my sympathy and admiration. Your wife is lucky to have had such a fine husband, and its a testament to your marriage. Thinking of you.

Mary G.

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

QUESTION: Mary
Thanks for a very all encompassing and accurate response.  I appreciate that you having covered the issue of my loss and finding ways to fill some that whole in my life.  I think this is critical for my survival and follow on care giving.

Just one more fine point you might have suggestions for: I have tried a senior care volunteer and have spent a few hour with Cornelia at a well done day care facility.  In both cases Cornelia did not want to have someone else care for her and was very anxious with the senior care person I did leave her her with.  I have moved back to working with only people she knows and trying to develop respite that way for myself.  Do you have other thoughts for generating respite or a comfortable transition into the time that more care giving will be a necessity?
Thanks again,
Henry


Answer
Hi Henry, I know you are so concerned for her well being - but you almost have to be like a parent leaving a child at a new daycare. Of course she will cling to you - but you will have to harden your resolve and give it some time. You know in your head if the caregiver is a kind, decent person, your wife will be safe, she will be well cared for, and she will be fine.  Trust in that, and go on out - in a lot of ways, this will be much harder on you than her. She will adjust - and it is for both of your sakes that makes it worthwhile to persevere - even if the carer is not someone she currently is familiar with. You need a range of other options going for you - and I applaud your efforts, and your worry about her anxiety.  

It may even be true that she does fine when you are out of sight and she is distracted by an activity, but gets anxious the minute she sees you (how many parents have been through that leaving a youngster at a daycare or new sitter  - finding it hard to believe they actually stopped fretting when the parent was out of sight). It might be worth the carer trying to engage her attention in some simple activity when you slip out (here are some ideas - not all will suit, but perhaps it will spark some other thoughts)
http://www.ec-online.net/knowledge/Articles/101things.html

Very sadly, her agnosia will ultimately make everyone look strange to her, along with every place, and every thing. Its a heart breaking phenomenon. Many people with dementia will even go through a phase when they think those close to them are imposters - like some sort of diabolical and artful fake. They look sort of like the familiar person, but something is not quite right.

My mother in law forgot she was ever married - she was widowed, but by later AD, she didn't recognize my father in law in pictures, and she took to signing her maiden name. She knew I was vaguely familiar, and  must be some sort of relative, but  if she'd never been married, I couldn't be a daughter in law, so she decided I must be one of her sisters. On a good day, she'd think my husband was her husband - which was somewhat understandable as he did resemble his father.

So, she was never really sure who the caregivers were - but she did adapt to their presence, and even their help with some intimate activities. The ones she was upset by were the one's with very short hair who she actually thought were men (her brain didn't compute the feminine touches of figure, jewelry, make up, clothing - for her the cue for male or female was exclusively hairstyle - probably quite true in her younger world).

When my mother in law was in an Alzheimer's ward, she went through a phase when she wanted to go "home" - which made us feel horribly guilty - until we found out that where she wanted to go was not the snug little apartment of her later years, not the marital home she spent 40 years in, nor our home. She wanted to go to her girlhood home, where she was sure her parents were waiting, and where she would feel secure and sure of her place in the world.

I guess what I'm saying is that poor Cornelia is at sea in a confusing world that gets ever more jumbled, and in the caregiving equation, your well being counts as much as hers, because she is so totally dependent. If anything, yours counts even more - because if you go down from stress or overwork, any hope of a gentle transition vanishes. That she will feel unsettled and anxious about any changes is almost a given, no matter what you do or don't do, or how you manage it, so you have to hang in there, put your head down, and push on through with what will be best for both of you in the bigger picture. You are working towards a transition for yourself as well as her, painful as it is.

You might want to have the new carer around routinely, even if you don't go out at first, just to give Cornelia a chance (even with her short term memory deficits) to get used to the person. I also think, that the less of a fuss you make when you go, the better things will be. For example, I wouldn't make much of a deal about leaving - be very matter of fact, and go, even if its a wrench for you, and you spend your whole time out worrying what's going on. Her short term memory problems will mean that she won't know if you are gone 15 minutes or three hours.

I know you love her so much for who she has been and are grieving every inch of the way as she moves away from that person - and that you are doing everything you can to cope with this all encompassing and overwhelming situation that has sort of snuck up and engulfed you. Hang in there - which I know is easy for me to say on the outside of the tar baby (by which I mean no insult to you or poor Cornelia).

You sound like a truly kind man. I'm not sure if this will help or not.

Mary G.