Why prolong the inevitable?

GolfnutCA

Hello, I'm new to the forum here.  I'm 53, my wife is 54.  Nine years ago she was diagnosed with MCI, which progressed to the stage of being diagnosed with Alzheimers two years ago.

She's lost so much.  She is now in the middle stages of the disease.  I think they're going to pull her drivers license.  She doesn't know what day, month, or year it is.  She can't shop for a recipe or plan any type of event.  My wife was and Electrical Engineer and an MBA, and now she can't figure out how to use her phone half the time...

I'm struggling with something.  Part of me says, why prolong this disease?  The doctor wants to put her on a new therapy (Namenda), and I'm wondering what's the point.  Quality of life?  She's totally miserable.  She cries everyday.  Her world is getting smaller and she hates it.  We argue a lot.  I'm pretty miserable myself.  I have constant anxiety, wake up at 3AM nearly every night in a panic and have trouble going back to sleep, feel isolated, etc.  I have a constant pit in my stomach.  Not finding much joy in anything anymore.

Maybe you all have some advice, but frankly, I'm completely overwhelmed and struggle to find the strength to see this through. 

M1

Welcome, you have come to a good place that can help you get through it. Glad you found us.. how shocking it must have been to have her diagnosed in her forties.

I dont think the namenda will prolong anything, since none of the meds slow progression of the disease. Mematine is supposed to be most effective in the middle stages. If it doesnt seen to help, you can always stop it.

I have learned some things from others here about how to interact and communicate, such that we argue lesss now t h an previously. Hope you will find it helpful too. Good luck, we all need it on this journey.

harshedbuzz

Golfnut-

I am so sorry you are dealing with this.

Namenda might help your wife to function better in terms of cognition and mood in the moderate stage. It might not. It does not slow the disease progression.

That said, given her mood and your anxiety, a psychiatric consult for both of you might make sense as well as some support for you in the form of a therapist and/or support group.

HB

mommyandme (m&m)

The meds won’t delay the progression of this stupid disease, it keeps on truckin’, but they may help her function a little better, for awhile.  That may be helpful for both of you.  I believe they’ve helped on our journey, although cannot be 100% certain.  

I’m so sorry for your pain and suffering.  Thoughts for peace today are being sent your way. 

driving with jane

It sounds like you are in a place that you don't know how to get out of emotionally. Have you thought about talking this over with a therapist? They probably will not be able to change any of this, but may have ways for you to deal with how you are feeling. And not everyone reacts the exact same way, and you are entitled to how you are feeling, and maybe your decision might be met with people disagreeing with you, but you have a right to make choices for yourself.

It's very hard to deal with this. No one can walk your road but you.

GolfnutCA

Hi, yes, I have seen a counselor but I feel like I'm stuck in a rut.  Our neurologist is going to recommend someone who specializes in this.  Hopefully that can get me some relief.

I'm open to all suggestions.

jfkoc

It does take a lot of strength to live with and take care of someone with a cognitive illness. There will be days that you want to throw in the towel. There will be frustration, sadness and anger. You will want to run away. 

So what is the answer? I believe that acceptance and education are the best answers. . Understanding that you do in fact have a choice in making a commitment to care for your wife physically and emotionally is a big step. 

You also have a choice as to the amount of personal, hands on care  you are committed to give.

Should you choose to remain the care partner o your wife you will need  to start in with education...yesterday.

I do not know anyone who had much if any knowledge on how to care for a person with dementia before facing the situation in real time. We all arrived here searching.

Now some good news. You have it in your grasp to make thing easier for you and your wife.

 You start with coming to grips with the fact that you are the one who makes the changes.....your wife is not going to be on your page any longer. You are the one who is going to make life easier.

Coming here is a great first step. We are going to support you, listen to you, share solutions that have worked for ourselves or others. We are a wonderful resource but there is a world of information available to you on line and in the library.

I suggest you google Teepa Snow, read Naomi Feil and  get a copy of I'm Still Here by Zeisel.

There is much you can do but there will still be days that you question and feel despair. Post here...we will give you a shoulder to lean on. We will  always do our best to help with what ever you are struggling with.

LJS45

I'm so sorry for what you are going through and that your wife is so young. 

My mom is on namenda and it's supposed to help with confusion in mid stages . I'm not sure if it has helped. Can't hurt to give it a try to see if it helps her though.

Have you considered having someone come in to care for your wife to give you a break? Not sure how she would respond but sounds like you need some time for yourself. May be a good idea to see a psychiatrist as other's have suggested also to cope with your depression and anxiety. This disease is so cruel and I'm truly sorry you are faced with all you are going through. 

LovingAwareness

Golfnut, it is so tragic and unfair that she and you are facing this disease at such young ages. This is terrible at my Dad's age (85), but so much worse for a couple as young as you and she are, because the years when you should be starting to enjoy the fruits of your work are stolen from you both. I'm so sorry for you. 

I'm your wife's age (54) and I care for my Dad - been here doing this for more than 10 years now. It was such a gradual slope down for so many years - first he needed help staying organized with bills and taxes, then he couldn't manage his calendar and social life, and I was always in the background supporting, trying to keep his life on track, trying to stay employed and keep a life of my own going. Then came the diagnosis, the absorbent underwear, the memory daycare. All the while as his needs increased and I was jettisoning more and more of my own life to carry his. Then came the moderately severe phase and his decline picked up steam - forgetting what a salad was and how to eat it. Not knowing what socks were and trying to put them on his hands like mittens. It became harder and harder to keep my job, even working from home, because soon everything I did for myself I had to do for him, only way more slowly. Cutting corners everywhere -with work, with Dad's care, and no life of my own whatsoever. And now here we are - facing down the severe phase... and something has to give soon. I won't be able to work and care for him much longer. But if I quit work to care for him, I might not be able to care for him anyway. Too much is unknown about the physical and psychological effects of the severe stage for him. I keep hoping for a miracle, i.e., a quick, painless passing. I don't feel bad about wishing for that for him... or for me. Not a bit. 

I have evolved over time and benefitting from the support and wisdom found in this forum to understand a couple of things: 1. Dad's brain can't be fixed. He is experiencing brain failure and it is like kidney failure or liver failure, no real options. 2. I cannot make Dad happy. There is nothing I can do that will make him happy again. Once I understood that, it actually got easier. It is emotionally important for both of us to keep trying. But my idealistic ideas are gone. He won't be doddering around the house still enjoying watching birds at the feeder or eating chocolate ice cream and sitting with a smile on his face while his caring friends and family visit to brighten his day. No matter how much I smile, hold his hand, speak reassuringly and lovingly, give him his favorite treats and go over the old photos again and again with him, I still can't stop or quiet the disordered mental state that he lives in. He does not live in the world where I live anymore. The best I can hope for is to make him as comfortable as possible for as long as possible. And 3. My ultimate responsibility to him is to find a place where he can be comfortable and minimize his risk of a catastrophe, and that might not be in his house, with me. I need to be ready to let go of that and have professionals take over when it is time. My wishes that I could fulfill my promise to him and we could ride this out here until it is time for hospice are something I have held onto tightly, but in the end that wish and promise will be one more thing that I will probably have to jettison. Just one more compromise, but a really big one, since I have now sunk so much of my life into salvaging his life. But I can't let that cloud my decisions. 

But enough about me...

Can she go to memory daycare? That has been a godsend for many people, including us. There are about 15 hours each week when I can relax and do MY things (which is usually catching up on my neglected work), because I know where Dad is and I know exactly how much time I have until he will be on my hands again. When Dad is not at daycare, I am on edge, stressed, carrying his life as my own. Always. If he is at daycare, my time is my own for that brief window. If it is possible for you, consider that. She used to be a brilliant woman and daycare might give her, "chances to succeed." - if she progresses like many who have anosognosia along with their dementia, she might at some point not realize that there is anything wrong with her. It sounds like it's not the case now, but if it happens, then let her live with that delusion that she is still a brilliant woman. Even if that means the world around her is at fault - or you are at fault - remember that the usual rules don't apply anymore. Daycare has given my Dad a chance to DO things - making an art project (earlier, not now), remembering an answer about Yosemite Park. They seem like small accomplishments to us, but psychologically they are important. 

Don't think medications are pointless. You say she's miserable and cries a lot, and you might not be able to make her happy, but if you can help make her less unhappy, it's worthwhile. Her emotions are still there and still important, so work with her doctors to find a way to take the edge off. Dad has been on Aricept starting earlier stages and recently tried Namenda and now Seroquel for his mood - the Seroquel has helped him be less grouchy, less agitated. The Alzheimers meds - Aricept/cholinesterase inhibitor - might have done some good initially, hard to tell now, but he keeps taking it because I'm afraid what will happen if we stop. For Dad, it's been a tradeoff with Aricept and Namenda between cognitive improvement and agitation. With Aricept, we thought the agitation was worth it for the cognitive improvement, but Namenda made him agitated in a way we thought dangerous - he suddenly started talking about taking his car out and visiting a girlfriend from years ago - so we stopped that one. It might help your wife, everyone is different, so if her doctor recommends it it's probably at least worth trying.  

Blessings and courage to you.

Cobalt

In general, keep remembering that the person with the illness likely can't change themselves and their behavior, however, you can change.  If you change the way you think, are flexible to try various options, become more knowledgeable, then I guarantee you will be able to cope and advocate more effectively.

A short bit of advise to our caregivers working with my son in difficult times, if what is going on right at this moment is not working, then change what you are doing with him.  Makes a huge difference.

Example:  sitting in his recliner after a few hours, son is starting to get cranky and complain of pain.  Solution: get him to "stretch his legs" by standing with his walker or do a little walking up and down the hall with his walker.  Or maybe change rooms or chairs.  You'd be surprised how much a little change makes a difference to get through long hours.

Jo C.

Hello and welcome to you; I am so glad you have found this very supportive place.  We are permitted to Post on any and all of the Forums we wish; but  I thought you may like to also discuss your situation on the "Spousal/Partner" Forum.  Go to the top and click on, "Message Boards," and the link to the Spousal Forum will be there.   On that Forum, you will find quite a few men who are caregivers for their spouses and you will also get some good input from them re their lives, caregiving and relationships.  This a very difficult place to find oneself; it is a heartbreaker and causes much upheavel regarding what is going to happen to the future and in all of that is also grief.  We grieve the changes and losses and we must find a way to begin to work through that. It takes time, but you are doing just the right things by reaching out both for counseling which is excellent and also by coming here.  Don't forget to see your physcian for your own health; that anxiety and inability to sleep may need a bit of assistance for awhile.

You mentioned in your Profile that family was also having a difficult time understanding all of what is happening.  I am going to give you a link to an excellent writing that you can share.  It is, "Understanding The Dementia Experience," it is thorough and explains so much as to why things are happening.  Good to share with family who also may be struggling.

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

As for the Namenda; it will not prolong life, but it may for some people improve function and cognition for awhile.  If it does not help or if it causes negative side effects, it can always be stopped; but not abruptly.  This is a med that needs to be tapered under doctor's guidance as it can for some cause issues if it is stopped suddenly.  Being here, you will read much about negative things happening; that does not mean that will happen to your wife. Each person is very different, some have an easier course.

We do not know your financial circumstances.  If there are sufficient funds, you wife may benefit from either an adult daycare setting or other activity.   In daycare there are activities, socialization and sharing that happens and you get a break.  One daycare is not the same as the other, so a little screening is in order.  Sometimes, we even use the therapeutic fib that our Loved One (LO) is going to be a volunteer or work at the center.  The staff goes along with it and gives little things to be done.  We do not call it "daycare," we call it an activity center or senior center.  Words have meaning.

Another thing that may be helpful would be to hire a "companion" to be with your wife a couple or few afternoons a week.  This person will engage her; if your wife is up to it, they can go for walks, they can do small craft things, watch movies together, go to the beauty shop; etc.  Since a companion is not a care aide, the cost should be lower.  I found just such a lovely person at the church we attended. It worked beautifully for quite awhile and that sure put my mind at ease.

Learning to communicate effectively as well as having structure and routine to her days are key to success.  Communication is words; but it is also attitude.  One thing our LOs are very attuned to and good at is reading, is our feelings. They feel the anger, upset, frustration from us very easily. It never, ever pays to blame them for something; or to argue or try to point things out and educate, that is not successful and it is upsetting to our LOs who sense their losses and do not have the mentum to deal with that.  She cannot help what is happening; not at all.  And; if sometimes she seems as though she is being upsetting with malice aforethought; well, maybe that happens now and then, but it is still the dementia that is causing her to have such feelings and behaviors.  If she could make this all go away, she would do it in a heartbeat. 

Jfkoc and others have given some good input.  Just know that we are all here in support of one another and that now means you too.

By the way, the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.   There are no fees for this service.   Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive, a good place to talk and vent, they have good information and can often assist us with our problem solving.

We know this is hard; we do understand what you are saying, and we are pleased to get to know you.   Do let us know how you are doing and how things are going.   We will be thinking of you and we truly do care.

J.

Fad marie

Hi golfnutCA, I don't know if the decisions are different for someone who is 54, but my mom is 76 and I have wondered the same thing as you about continuing her medication for Alz.  My mom is on the Exelon patch and she changes out the patch every day.  She's been using it for over 3 years now.  She started on a higher dose, but that caused her nausea so they lowered the dosage.  They have not increased the dosage since and I haven't pushed for it because why cause her nausea for what seems like small returns?  I will say this much... we've not discouraged her from using the patch because it's possible it improves some day to day functioning as others have said.  The only comparison I have is my mom's sister, 74, who also has Alz.  She never got a formal diagnosis because she refused to see a doctor, but she is now in MC and she is on meds for psychosis.  Her functioning seems much poorer than my mom's even though they both showed symptoms around the same time.  Of course, there could be other reasons for her poorer functioning (her H died around the time we first started noticing symptoms and she has no children so she was largely on her own initially).  But it's also possible that my mom's functioning has been helped by the Exelon that her sister does not take.  My mom does not have the paranoia and hallucinations that my aunt has.  My mom does have a few delusions (she talks all about how she worked for Donald Trump years ago... she did not), but she seems more lucid and less aggressive than my aunt, who generally refuses to see any family and is angry most of the time.  Again, there could be many reasons why my aunt has fared more poorly than my mom over these last 4 years, but we can afford the prescription and there seems low cost to continuing the patch for now.  I know the decision to continue all sorts of meds for someone with Alz is complicated, and I struggle with it as well.  

bozowing

Interesting you made this post cause I've been wondering if I'm a hugely bad person to start to think of why my dad just can't die and this could be over for all of us...feel like major jerk for thinking this!

Jude4037

None of us want our loved one to die but to not suffer. It is so difficult to watch. All around them suffer too. Generally, by the time they get in the end stages they do not resemble our loved one at all. Our role as husband, wife, child etc has changed also and none of us signed up for the role that has been thrust upon us. But we are in that role and struggling to do the best we can and some days failing but still hanging in there. It’s an ugly way to make ones exit.