Expert: Mary Gordon - 5/17/2007

Question
QUESTION: My dad was diagnosed with Ad 2 years ago.  He needs help with bathing, (he hates bathing), dressing,  he has advanced in the last 2 years since I moved home to be closer to him.   We have issues with incontenience, sometimes fecal.  Anyways,  he lives with my brother who works full time, as of lately.  Therefore, my husband or I take care of him during the day, we work opposite schedules because of dad and our kids.  Well after 2 years, I am really beginning to feel the toll it is taking on me and my family.  My dad is on a waiting list for a home, but in the meanwhile, he is starting to hallucinate, seeing people in his bed etc.  I believe we must be in stage 6 of AD.  When I get the call for a bed in the nursing home, I have no idea how I am going to get him there or how I will emotionally.  The guilt and all the other emotions I feel are overwhelming at this point.  I am only 40 and I feel that I am going to break down anytime now.  It is so unfair to my kids and husband.  I have 2 other siblings who are no help just because I am POA, I never knew that would be an issue.  Someone had to take charge.  Anyways, any suggestions would be appreciated.  My dads finances are not an issue, thankfully, he can afford total care.
Thanks!!
ANSWER: Hi Mary

Put away the guilt. Your father is an entirely different person now than he used to be, and his needs and wants are very, very different. You may have made promises to him, or to yourself - but that was based on things they way they were then, and everything has changed. Your family has to deal with who he is now, not who you wish he still were. I know you know that right now is as good as it gets, and it gets harder and harder from here on in, and crueler and crueler.

Everything is a jumble to him - nothing makes sense, people, places, things - even what should be familiar - everything look strange and unrecognizable. He could be at home or in an institution, and the truth is, he won't know the difference. It just breaks your heart, but its reality. When my mother in law was in the Alzheimer's unit, she used to ask to go home - but if you talked to her a while, where she really wanted to go wasn't her apartment, or the house she'd shared with her husband and raised her son in. She wanted to go HOME to her parents house. She wanted her mom and dad and sisters - people, places and times long, long gone - where she knew her place in the world, where things made sense and she belonged.

I promise you  - you will find the transition harder than he will. When my mother in law had to go into a facility, what we did was get her out of the way for a day so she didn't see any of the preparations. We sent her to spend a night with her sister. She had a lovely visit, a nice dinner, and she spent a relaxed night there - while we ran around like maniacs packing and moving everything that needed to go to her new place. We had everything set up and arranged, pictures hung, clothes in the closet, hairbrush in the bathroom. That way, there was no fuss or bustle around her to make her upset or confused. We just went and got her, took her to the new place, ate lunch with her and had a visit, and then we went home, knowing that the staff would take it from there.

We were wrecks, she was fine. Keep in mind the care staff have a big advantage over the family at this stage in the dementia - they aren't tortured by the loss of the person. They can accept him as he is without grief. They don't regret the past or fear what comes next for him. They show up for their shift well rested, put in their time - and they get to go home! They can take days off, go on holidays, enjoy hobbies, a social life, spend time with their spouse and their children. They are also working in an environment designed for caregiving - they have all the right equipment, they have cleaning staff, they have set routines, the place is designed to be easy to keep clean. I mean, how many homes have the kind of showers they have in care facilities, where there are grab bars, hoists, special hoses, where they can wheel the person right in, and easily clean them up!

The very last thing your father would want would be for you to sacrifice your sanity, your health, your career, your marriage, your social life to look after him. Other people need you too - and your children go forward from here, in a way he can no longer. Your husband and your children come first - thats what you promised when you married. Your job as his daughter is to love him and honor him. Thats it. Just to love him and look out for  him, and make sure he's treated with respect and dignity. Loving him doesn't mean you have to be the one changing his sheets, trying to get him into a bath, wrestle him into a clean sweater, try to get him to eat his lunch, or stay put after midnight. Anyone can do those things - but no one can love him like you can.
He wouldn't want to have become a burden to be resented.

What will happen is that you will feel terrible and upset - but he will do fine - and within a few weeks, you will feel like the weight of the world is off you. You will feel so relieved - and it will take you a while to relax and realize he's okay and you can stop worrying constantly.

And...you will wonder why you didn't do it sooner. Look, you've done everything you could, and while it still mattered, you kept him home. Now its time to let someone else do the physical work of looking after him, and you just do your part of keeping an eye on how things are going, and seeing how you can make his quality of life better, in whatever small ways you can.

Don't give up. You are doing the right thing. All you've got is right now, and you have to make hard choices - but you and the rest of the family have to be factored in. He may live for years and years yet. No one wins if you end up on your knees driven into the dirt trying do it all yourself. You have to know in your heart, you've done your best, and will continue to do your best - but your best doesn't have to mean you keep him at home. Thats just not possible, so put away the wishful thinking.

I'm so sorry this has happened to you, and to your poor father - its totally crummy and unfair, but it is what it is. You can rant and rail and shake your fist at the sky - and when thats over, you still have to cope with a raw deal.
Being a grown up is totally no fun - your sibs have ducked and run for cover to avoid it. You're the one who will be able to sleep, knowing in your core that you've done the right things.

Hang in. It will get worse for a bit, but I promise you, it will get better when you know he's in a good situation and you can trust that he will be well looked after.

Mary G.

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

QUESTION: Thank you for your quick and helpful response!  If my father was diagnosed Dec 2005 and probably had Ad (early stages a few years prior), what do you know, from experience, the ave. life span?.  Meaning, if my dad is now starting to hallucinate, refuse to go to daycare, become somewhat violent ( not with me yet! thank Goodness), what kind of time frame are we looking at?  I know you cannot say, but I am asking from your experience.  Also, I was under the assumption that when he leaves his element (his home) that could actually accelerate his demise.  Maybe that is why we have been trying to avoid placing him as along as we have.  But like I said before, it is affecting me and how I am with my family and even my friends.  they have no clue nor should they.  It is a cruel disease and I would never wish it on anyone.  I feel like it is killing me at the same time, no energy, bummed out, lashing out etc...   Anyways,  I am hanging in there and I am starting to get pictures together  in a plastic frame, 10 sets of clothing, a new lazy biy ordered etc...  I did visit the facility and I have spoken to people whose loved ones have been there and I am reassured that the facility gives wonderful care.  So I have done my homework.  Ironically, his doc wants him to have a colonoscopy, go to urology doc due to increase PSA levels, repeat cat scan to see if there is more brain deterioration ( well duh!).  My husband and I are nurses and we think that is only because he ( my dad) has great health insurance and those procedures are billable.  So we are not going down those roads!  I think you can see why and will agree!  thank you
ANSWER: Hi again Mary,

You asked about survival time. They used to say 7 - ish years from first symptoms was an average survival time. However, more recent studies have found its more like 3 - and its not the Alzheimer's that ends up killing them.
Its all the other health issues the frail elderly tend to have - none of which can be dealt with in a person with advancing dementia. I know you've seen it - its very hard to detect health problems in a person with advanced dementia. They often don't complain of symptoms (perhaps the brain damage means they don't feel symptoms the same way a normal person would). They often can't use words to describe their sensations, and they can't answer questions. So the carer is stuck with guesswork - and so many illnesses are very advanced before symptoms become really overt (i.e. they run a fever, they get a swelling, their leg turns purple - something obvious).

And then there is the problem with complex diagnostic procedures that a person with dementia can't understand or cooperate with. The tests can be scary and painful - so families are stuck between a rock and hard place....because even if an illness is diagnosed, is it worth putting the person through treatments, when they are already dying of a progressive and fatal neurological disease like AD. Plus again, so many treatments are only worth undergoing if there is a real chance of total recovery (I mean, who would put an elderly person through aggressive chemo for a cancer, when the suffering has no payoff in terms of quality of life). No wonder so many opt for palliative care. You've also probably seen first hand what happens to people with AD who go through general anesthesia - a big dive downhill from which most never recover.  Sometimes I wonder where the doctors heads are-  bustling about to check out your dad's prostate or colon - I mean, if I had my druthers, having seen what happened to my mother in law,  I'd rather die of anything but the end stage of AD. Its just brutal on everyone - the person is like a living corpse, can't talk, can't walk, incontinent, helpless, doesn't know anyone, spoon fed, sleeping all the time in bed or propped in a chair. That potential prostate cancer might be his truest friend if it saves him from that kind of twilight existence.

My mother in law was robustly healthy and 73 when she was diagnosed. She had no health issues to kindly end her life. She died of end stage Alzheimer's at 79 - just before her 80th birthday. We kept her at home as long as possible (like you, we had young kids during the time her illness developed). She went first to assisted living where she only lasted a year because she was developing the problems you see in your dad, and she was too much for them to supervise adequately. She was then in a locked AD ward for about 2 years until a hip break and the advance of the dementia put an end to her walking. After that, she was in a heavy care nursing ward for another two years. So - from the point where your dad is - it was a full four years to the end.

Not what you want to hear, I know. Its just not like any other illness, and I know what you mean about getting worn down in ways other people can't understand unless they've been through it. If he had cancer, the illness would be tend to be time limited and more acute - and its easier to bear if its short - if its a short jog, instead of a gruelling marathon that just keeps getting worse without any end in sight (and of course, the terrible crushing guilt of wishing it WOULD end.

Its just impossible to predict how long he may live - probably at least another couple of years (and all the more reason to make the transition to a care facility - this doesn't get any easier).You and your family need to have a good talk about what may happen going forward and what your choices will be. I know you have the POA - but you and I both know, that if other family members object to how his health is managed, they can make your life very difficult.  I take it you would lean to palliative care only after a certain point - keep him comfortable and as happy as possible, and turn away the invasive tests or treatments.  You need to think about how far you go with this. Does he have a DNR order on him? If he developed pneumonia, would you treat it (I mean, beyond comfort measures). If he develops problems with eating (which he will, due to dysphagia), what are you comfortable with? You may have tubes pushed on you. So much to have to think through.  We were helped by frequent care conferences with the facility - we'd sit down with the doctor, the director of care, and we'd all get on board with what we all agreed was the best care options for her.

You mentioned you feared that going into a home accelerates the decline. Well - just my take on it - the early stages of AD tend to be slow and gentle. The decline is gradual, I suppose because we all have so much redundancy in our nervous systems. And then comes the day in Stage 5 or 6, that every loss seems staggering, that basic abilities start to wink out in quick succession. I think they've just gotten to the point that they are just holding on with their fingernails, and every neuron that goes might be the last one holding some important skill together. Most families do okay with coping with caregiving until stage 5 or 6, and then the care becomes too heavy for many people - and they blame themselves for the decline that is actually part of the disease (He'd be better if I'd kept him home.)  You know in your gut, the person would be declining just as fast at home (though perhaps when you live with it daily, it doesn't seem as dramatic as when you are seeing the results weekly or monthly. I do remember finding members of our family weeping in the hallway after visiting my MIL. The ones who only saw her once every few months were always shocked , as the changes each visit seemed really dramatic to them compared to those of us who saw her more frequently.  

I'll tell you something else. When my mother in law had to move from assisted living to the locked Alzheimer's ward, she went from a huge, lovely corner room that was beautifully decorated, to a quite small plain room. The facilities were miles apart, and completely different.  We were sure she'd be upset about not having as many of her nice things with her. She was not really fully aware she'd moved at all. I guess loss of short term memory was our friend - she was sweetly oblivious. And if she did notice anything, she wasn't capable of thinking through what the reason could be. She didn't notice her room was different, that the people and the staff were different. The only comment she made was when we were eating dinner with her the first night, she remarked about the headlights of outside traffic shining through the window (the other place was on a very quiet roadway).

We were the ones who were tortured, not her. She was living in that state of grace where she drifted through the day, not clearly knowing where she was, who she was with, what was going on - living in nothing but now.

Hope this helps. Thinking of you. You need some support and a good break. Be kind to yourself. You are a good daughter and he's lucky to have you. He must have been so proud of you.

Mary

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

QUESTION: Hi again,  thanks for the other response.  Today I was at my dad's and he got real funny with me and his pills. Tlaking way out there, I cannot even explain the conversation.  But he was very agitated, almost violent with me.  needless to say, he never went to adult day care, I was not about to push it.  Anyways, I spoke to the VA, and he has been pushed up on the list from 32 to 19!  I told my one brother that lives with him and he freaked.  He said to call and put him back to the top, that we will keep him home as long as possible.  Well this brother has no wife, no kids, and just now started working mon thru Fri full time.  He is finally getting a break and  have had to work less hours because of this.  
Today when I was at my dad's, I noticed dirty underwear in the bathroom garbage and poop on the floor and sink.. Naturally I cleaned that up, but after speaking to my brother later, I guess that has happened more frequently than not.  When do we say when? My brother says that is my decision.  Why is it always my desicion?  How tdo I convey to him that it is unsafe for dad to be home alone at all, even an hour or two?   He could wake up and start the stove, walk outside etc...  My brothers think tis is me, a girl, being overly dramatic!   The literature is out ther, they choose not to read it yet say I am dramatic.  
The VA said that they may call me next week for placement and I have no idea how to make this happen because of my brother!
Thanks again
Mary kay
ANSWER: Hi again Mary.

Your brother shouldn't be trying to lay this all on you - he obviously is having a very hard time accepting and coming to terms with what is happening to your father. Not everyone has it in them to be a grown up.

However, don't let his lack of courage stop you. The situation is what it is, and you don't need anyone's approval or permission to do the right thing. I know this is scary and you feel so guilty and alone - but you know in your gut what you need to do,  so step up and do it.  

The thing is - your father needs 24/7 active support and supervision, and this disease requires flinty eyed realism - no wishful thinking on this one. I know that heart and soul you wish this wasn't happening but it is - be completely flat out honest with yourself about what you and your brother can provide. Your dad is like a small child in that he has no appreciation of dangers, and no insights into his own impairments. He can't assess situations and figure out whats safe and what's not, what is appropriate and what is not. He will get into things that can hurt him, he may wander away, he will have accidents, eat inappropriate things, maybe take medications etc. etc. I know there is no way you'd leave a toddler with a babysitter you knew was irresponsible about supervision. Its just too dangerous.

Leave your dad where he is on the list, and keep calling them - things can change fast, and it may still be a while before a suitable spot comes up for him. When a placement comes up - TAKE IT. Its not like you can't change your mind if it turns out you aren't happy with the care.

If your brother was a mature man, he'd be standing beside you and supporting you, but he's being a wimp because he can't deal with his own guilt. He can't bring himself to face this thing  - but in the mean time, do what you need to do to protect your dad, yourself and your family. Do not let your brother's spineless stance stop you.

I know this is so hard, but you can do it, and when you look back on this, you will be at peace with it. You can regret your dad got this disease, you can regret it was ever necessary to make hard choices (and yes, its totally crummy and unfair that this happened to all of you), but you can't ever regret taking steps to look out for his best interest - and safety is in his best interest.

Hang in, this is the hardest part.

Mary G.

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

QUESTION: Thanks again for the quick response, very helpful!   I stopped by today i=on my way home from work.  My husband was there during the day, not all day.  When I arrived at dad's house, my brother was getting his dinner ready, doing laundry etc.  he tries his best.  Anyways, he agrees that dad is going downhill and that a home would be best, he just thinks that dad will freak out and hate us.  he actually wants my dads friend to talk and explain this to him.  Well that is fine and dandy but dad will forget 5 minutes later about the conversation.!! I guess the question is how do we get him there and etc...   How will he react?  Will he hate us when we visit?  beg to go home?  I know that it is in his best interest that he goes, regular bathing, and so forth, but how do we get him there?  I am calling the Ad association and set up a family meeting and hopefully they can explain and persuade my brother why this must happen and soon.  
Thanks again
Mary Kay

Answer
Mary, there IS no way to prepare your father. He can't see his own impairments or assess his situation, so logical argument and persuasion won't work. He also has a very limited memory, so no matter how great a case you put before him, it would be forgotten entirely a few hours later. I think all you succeed in doing in talking to him about it is getting him upset - and that distress will last long after he's forgotten WHY he's upset.

You have to "get" in your core that your dad will not absolve you. He cannot forgive what he cannot understand. He will give you neither permission or agreement - no more than a kid can understand why a parent makes them do certain things that are in their best interest (whether that is to play in the fenced yard, or go to school). You cannot wait for the day he'll look you in the eye, listen to your intelligent, well thought out arguments and explanations and say, Mary, I agree entirely, you are right, and I'll cooperate gladly. That day will never come.

You might want to invest in a couple of copies of the 36 Hour Day by Mace and Rabin, published by Warners. If you only buy one book on Alzheimer's, this is the one to buy (its in softback, so its not expensive). Its full of insights and tips, and I think it will help both you and your brother a lot.

My personal take - you make the plans, and tell your dad IF you think you must but don't make a big deal out of it (i,e, don't turn it into some big dramatic intervention with a cast of relatives and friends).  Be matter of fact, low key and don't get into an argument (you just can't win when you try to argue with someone with a damaged brain).  I strongly recommend doing any packing, moving, rearranging, and unpacking etc. at times when he is not around - that kind of bustle is just unsettling. In other words, when you take him there, have his things all unpacked there before he's there. Don't expect him to be able to make good choices about what to take with him, either. You should expect to do that on your own.

If you have to, you can make up a cover story - a white lie. You will find this described as loving deception on a lot of Alzheimer's pages. Tell him he's staying there for a few days, its a hotel, its a convelescent home, whatever. I'd prearrange with the facility and your doctor to have some mild sedatives prescribed to be used only if needed (i.e. in case of agitation, which I know he's displayed even around you - it might be better or worse with strangers, or he might be up at night and get confused about where he is).

You can talk to the facility when the time comes, but I'd suggest you bring him in time for a meal, and eat with him if you can (most places let family stay for lunch for a fee), and then when lunch or dinner is over, let the staff take over, and say goodbye - without a lot of fuss - no different than a mom saying goodbye to her child at daycare. Fuss breeds distress, so again, low key, no big deal works best.

It would be worth getting support from the Alzheimer's Association - who knows what they can offer. We used to attend a support group for the families of dementia patients at the facility my mother in law first lived in. It was great just to talk to others who had been in the same shoes.

You will have to reassure your brother - that this is not about him failing. You know he is trying his best - but this has to be about what is best for your father AND the entire family. When the load is off you, you can spend some real quality time with your dad - just enjoying BEING with him instead of trying to run your life and look after him at the same time and not succeeding at either!

There are some good suggestions on this page.
http://www.alzheimer.ca/english/care/ltcare-adjusting.htm

Hope this helps.

Mary G.