Just wondering on how you cope with the inevitable...

Do you attend caregiver a support group? That is what this site is but human interaction is very helpful. There was even a men's group that my stepdad used to attend. Check the Alzheimer's Association website to see if there is one near you. It always helps just knowing there are others in the same situation.

There are some men here hoping they will show up.

By doing the best we can and giving ourselves grace and mercy when we mess up.

Just like we give our loved ones the grace to not be held accountable for all the things the disease causes them to do. You are on this journey with her, God bless you, so remember for yourself that you can't always help what you do. You acknowledge it and forgive yourself and move forward.

I think most of us here really get where you are and what you are going through. So big hugs and welcome.

I don't have any original advice but just wanted to say you are not alone and keep on checking in with this site because there are a lot of people here who are going through or have gone through what you are experiencing.

Be gentle with yourself.

One day at a time. That's all you can do. One day at a time. Love them while they're still here and remind them of it every chance you get. They'll go knowing they are loved and remembered for who they are, and you'll get solace in that fact after their gone. Reach out to others when you need to vent either here or in a support group. Or both. Take care of yourself because if you don't, you won't be able to care for anyone else. Were here if you need anything.

Timy,, there are some caregiver support meeting that have participation for the spouse or activities for them.

You are not alone with your feelings. Heartbroken, sad, overwhelmed, exhausted, guilty for getting frustrated with them, grieving for a life we used to have and aren’t ready to let go of yet are what I think we can all relate to. Acceptance helps. Going with it one day at a time helps. I hope you keep up with your running schedule and stay engaged with house projects. Getting outdoors and breathing the fresh morning air helps to calm the nerves and quiet the mind for a few minutes. Engaging with this forum is good. I checked the local senior center, hospital, and the Alzheimer’s.org website for in person meetings and found one that meets twice a month. I have attended a couple times and found it helpful to get practical advice as well as simple understanding. Friends just don’t get it. Post here as often as you like.

Hi Timyom,
Our lives are a mirror of each other. I watch my partner of 41 years fade away and often wonder what he is thinking and feeling. He too did not "hear" the neurologist when he diagnosed him with Alzheimer's. It's only been 4 months since that diagnosis, but he still believes that he is perfectly fine. I've had to stop work to care for him. He has lost interest in all activities except walking around the block a few times a day. This was a man who was always busy with home projects. He was up on the roof, in the attic, or out in the garden. Now, he sits and waits for me to entertain him all day. I can't go anywhere without taking him with me. He gets me up at 6:30 every morning and doesn't want to go to bed at night. He wandered around the house in the middle of the night. I don't know how he can stay awake during the day after being up all night....He won't take a show. Won't brush his teeth and the bathroom has become a HazMat Zone. I'd love to attend a support group meeting, but I can not leave him alone. We are together 24/7. I need a break. I feel like I'm loosing myself, and I'm exhausted He's well cared for now, but I see him fade just a little each day...and yes, the whole thing just stinks. Breathe deeply. Take a moment for just yourself whenever you can snatch it. Banish guilt. Set boundaries....and place one foot in front of the other. I promise to do the same.

Oh I so know this pain you are going through...My Husband was a dual engineer. Very sad to see when he can't operate the microwave...He has 4 adult kids, they all know what his condition is...Only 1 has come to visit him. I bet they all show up for the reading of his will...I am younger than Husband but I can empathize with the frustration feelings. He has them because he can not find the words anymore..Of course I feel my gut clenching from time to time...And when he has a good day I feel like ahhh, we have a good day going but please remember we all lose our cool when being a 24/7 caregiver. Look into having someone come in so that you can take a break. We are going to Elder Law Attorney to protect assets and updating his will before he can't anymore...Take deep breaths...Peace

Caregiving for anyone requires healthy coping skills. Healthy coping can include setting aside time for yourself, eating right, exercising, venting on this forum, talking to a therapist or religious advisor, and generally taking good care of yourself. Stress management is key as is acceptance of her illness and your limitations.

Be kind to yourself because you are doing your best. You are one person doing many jobs. You are only human. Your feelings are real and you should not ignore your own needs and wants. It's normal to have your own wants and desires outside of being your wife's caregiver.

I urge you to consider placing your wife in respite care so that you can get rest and sleep as well as some perspective on how to go forward. The sad reality is that many caregivers die before those for whom they care caring.

How did I cope?...
I reminded myself that the worst day that I was having might soon be what I would call one of the better days....
I reminded myself that the constant noise he made, that drove others crazy would be a noise that I would miss once he stopped making them.
I reminded myself that even though he had not called me by my name in over 6 years when I would leave, he would turn to give me a kiss, when I returned he would give me a kiss.
He may not have known who I was but mine was the hand he held.
I was the one that he smiled at when I talked to him.
I was the one that could get him to laugh.
(thanks Timyom..fresh tears here!)
Do I miss doing 3 loads of laundry a day?
Do I miss having to get him out of bed with a Hoyer lift?
Do I miss getting him changed 3, 4 6, 8 times a day including bedding because he liked to "re position" himself so that he could manage to soak the bedding but keep a brief dry!
Do I miss keeping track of what he ate, when the last BM was?
You bet I do!
Would I have wanted him to stay with me longer? You bet
But it would not have been fair. He would not have wanted to live the last of his life the way he did.

Love her
Hold her hand
Tell her that she is safe and that you will care for her as long as you can.
And when the time comes tell her that she can go that she will always be with you and you will be alright.

and I have to throw this in because it's what I do...Hospice can help you and her with supplies and equipment please do not hesitate to contact them. My Husband was on Hospice for just over 3 years and I could not have done what I did without their help, support, education.

She is SO lucky to have you.

Take me comfort in knowing that you are her Superman.

Don’t go back to the neurologist who made you unhappy - that doctor will only get worse, make you unhappier, bother you more.

That doctor will only repeat the “memory” word and repeat-the-story tests over and over until your wife and you both feel humiliated, exhausted and hopeless.

Find instead an empathetic geriatric specialist, family doctor, internist or DO. Someone positive— who inspires, listens, makes you feel supported and has a kind bedside manner. Someone who is nearby. These doctors exist and you will need them.

Those initial diagnoses are tough! My mom, with her soon to be hubby (high school boyfriend) stormed out of the doctor's office swearing that doc was a quack and did not know what he was talking about. They left with the intention of never returning. I heard the story from the doc about 6-7 years later.

They kept the same doc, the diagnosis was correct. They were angry and frustrated because it was something they did not want to hear. They were soon to be married. They married anyway, mom continued her downhill slide. Her hubby continued his path of denial for about four years, until his own medical issue, needed a hip revision. Only then, did I realize how bad mom had become. He NEVER spoke of it, part of his denial. I then cared for mom while he was in rehab and this was the first time that anyone in the family realized how sick mom had become. The majority, twisteds, auntie dearest, preferred to share his denial. That is very tough on a caregiver!

It is better to accept the diagnosis, sure get a second opinion if that is what you need. But, I, truthfully, do not think if there is a bedside manner that would make this diagnosis any easier to communicate or for the patient and family to accept.

Mom continued with the same doc until her placement in memory care about six years later. He was a great doc, compassionate and understanding. Though I am sure mom and hubby-to-be did not think so with the diagnosis delivery. The moral of the story, reflect, would the doc's delivery really made any difference at all?

Can I recommend that you find a list of neurologists that accepts your insurance and start asking everyone you know, look online for reviews and talk to your doctor about getting a referral to a doctor that will be a doctor with compassion and not the Yahoo you saw 1st. Let this new doctor tell her the diagnosis, if she was mad the 1st time, she will be mad the 2nd.

Please don't hide this from friends, make phone calls to everyone, even the ones that have gone on silent. They know something isn't right, so be honest and ask for help, please don't suffer this alone together. People can be asked not to mention it in front of or to your wife, but knowing will help them have more compassion and understanding when dealing with her.

Silence in these illnesses gives them power over us that they don't deserve. Your wife, nor you, did anything wrong, so no shame required. Reach out to all those you and she love and tell them what is happening and let them love you guys through this hard time.

You will find a good neurologist, you just have to do your due diligence. Send a letter in advance, explaining what happened and how you would like to have a diagnosis from a professional. Explain that you can not be put in a position that makes her angry with you.

Best wishes for speedy results. May God bless both of you richly.

Thanks for the advice....the neurologist we saw is the only one in town.....Periodically I have searched for one within a 100 mile radius....My plan has been to discuss this with our internal medicine Doctor during my next visit....
I believe you make a valid point...that at this juncture it may be time to discuss her condition with a few friends..

Timyom,

Don’t blame yourself - we were “taught” to respect and to listen to doctors—to follow their directions and trust their judgment. Providing our loved ones with the best care is so important that we would do almost anything.

I’m sure every caretaker here has had experiences just like yours. I know I have.

My experiences have changed my perspective. I now believe that doctors are just guessing — sometimes merely making a wild guess. Internet research shows that they didn’t even do internet research. Of course we still need doctors and there are many who are kind, skilled, competent, and compassionate.

My mom was sensitive to medications—having exaggerated responses to normal doses. She knew this and told doctors.

As she grew older (probably based on her age alone) , the doctors would regard her as if she didn’t know what she was talking about. They stopped listening. They stopped listening to my dad too. When Dad reported that Mom was overmedicated they wrote things like “patient and elderly spouse do not understand directions” in the chart. When we switched doctors, we got the records and saw it all.

My dad implored them to stop prescribing such high dosages, they wrote he was confused and non-compliant. He wasn’t. The medical records from the day your wife had the problem likely also question and discount your own competence in an effort to limit the doctor’s liability and cover up their errors.

We got mom new doctors. Even convincing the new doctors to reduce medications was challenging at first— but it worked. She was healthier and her mind was clearer for the rest of her life.

You may have created a “health notebook” for your wife. Every time there is a medication problem, write down all the details. She may have an allergy, a sensitivity, an interaction with another medication. She might not have been able to tolerate the dose. Was it a medication she really even needed?

A good primary care doctor should start with vitals and blood work. Confusion can be caused or worsened by many problems including heart trouble/hypertension, compromised kidney or lung function, unbalanced electrolytes, dehydration or infection. Pain can trigger confusion-by starting a domino effect with high blood pressure. Confusion can even be a side effect of one of her medications or caused by a drug interaction.

Dies she need all the medications she’s on? Read the pharmacy print-outs. Focus on the warnings, possible complications and drug interactions. Talk to your general practitioner. Does she need to go even go to a neurologist?

Does is matter whether she has dementia or Alzheimer’s? You will love her the same either way. Research shows that a true diagnosis of Alzheimer’s can only be made post-mortem, yet neorologists hand out those diagnoses left and right. Probably because they need your statistic to get their research grant.

I’m glad that you are there for her.

What my brother and I found out is that doctors know less about treating dementia than the family as caregiver does.  They overmedicate, they don't listen, they blame, they misdiagnose, and the list goes on.  Sometimes they don't care and will say things such as, "He/she has lived a good life." 

I suspect that the arrogance and defensiveness and the posturing of clinicians has more to do with feelings of impotence and anger at a disease for which we as of yet have no cure.

We learned to fight for what we knew was right every little step of the way.  And 99.99% of the time, as it turns out, we were right.  We were right that mom was having small seizures.  We were right that she had a kidney infection.  We were right about a lot of things that the doctors would not recognize and it seemed to take an act of God to treat.  We also had to fight to humanize our parents when they were vulnerable, as the thrust of healthcare today is to "conserve" resources.  That means writing off the elderly as "wasteful" of our valuable resources. 

Listen, but do your own research.  Listen, but don't necessarily trust.  Get second, third, and fourth opinions.  Argue, but do it respectfully.  Come armed with your lists and histories. 

Help the medical profession help you and your loved one, because trust me when I say they need all the help they can get.

I'm on the other side...the one with dementia...and I can't tell you how awful it feels to be betrayed by one's own brain. I feel useless, inept, pathetic, ludicrous and unloved. I can't wait for death! My partner gets support...but where is mine? I'm still a human being, with hopes, goals (that won't ever be realized--hopeless goals) and giving love--and needing love--and none of those hopes, goals and love needs will be realized... Death can't come soon enough for me. I've even lost faith in God. Damn Him! Women are the main Alzheimer sufferers. I'd rather care for someone with Alzheimer's (as I have done in the past) rather than have the disease myself. God has a lot to answer for this neglect of care for women. Or maybe God already has Alzheimer's.

I'm dealing with mom's end stage Alzheimer's now and she's near the end of life. How do you cope? You really can't. It's more along the lines you HAVE to. I've never been separated from my mom ALL of my life -- she has ALWAYS been the center of my existence so I don't know how I'll cope when she dies..other than knowing it's going to happen to all of us. Taking care of her is very back breaking and the things I have to do--take her to the toilet, bowels..bladder..are difficult for her. She tends to aspirate even with the best precautions and chokes on secretions (I ordered a suction kit and it wasn't cheap). I'm near 60 and she is just a few months away from 90. Hey nobody lasts forever. But tell your memories that.

I think there is no way to prepare for death. It happens and you live through it. Your bills keep on coming in. The cats need to be fed. Litter boxes changed. Life, you know, goes on. and you still have responsibilities. Caregivers who dropped out of the workforce for YEARS have a much more difficult time because it will be extremely horrible to find a job and mom is no longer there to lean on. Caregiver and parent become a symbiotic process where the caregiver depends on the parent as much as the parent depends on the caregiver. It's just that caregiving will become a 24-hour a day, 7 days a week job and it costs hideous amounts of money to hire people. A sitter--who does nothing but sit--is $20 an hour. A certified nurse's assistant who helps with bathing, toileting..that's like $35 an hour. and if you do not go throught a LICENSED and INSURED agency the hired help can CLAIM to fall and hurt themself and sue the estate -- whereas an agency they are insured and must access Workman's Compensation. There are other things like nanny taxes if you hire someone on the street. an agency at least takes care of all of that.

All that will change. so dealing with death AND having to get back with the business of living will be a daunting challenge. I am thankful my best friend watches my mom once a week so I can work and an understanding employer who lets me do this. but those who do not have a job..they will really have a rough go of it. because they can no longer live on their parent's retirement.

Bottom line the bills keep on coming in so off to work and back to the pulse of life. Because you have no other choice.

Death is death..and at least they won't be suffering anymore. And maybe..just maybe the caregiver will rediscover his own self and not live in the shadow of that caregiver role spending one's entire life getting them up, making sure they don't fall, toileting, bathing, feeding, brushing teeth, bowels, bladder routine.

You can't live like that forever. The stress of caregiving will actually kill a person..the constant worries and fears are gripping beyond description. When mom dies..all I know the electric, water, fuel bills will need to be paid..insurances will need payment..so we go on dead inside but wearing our masks of "normal" to the public because we clocked in..and just go on living.

What else can I say about death? I believe we never get over it..but we learn to adapt to this stark reality. At least their suffering is over. Perhaps we will get nuked in a year or so with World War 3 so at least they are spared of that.

You know in your heart she cannot help it. Don't try to challenge her, that's what my hubby does to me. Sometimes I do not remember things as well as he can, and he likes to remind me. At least sometimes that's what it seems.

If you run into an old neighbor again, Say out loud, Hi James, It's been awhile, how are you? Maybe there is a special moment that your family had with James in the neighborhood, like the impromtu BBQ you had, for example.

If it gets bad at some point, take a break. Take a breather, go to store, walk, empty the garbage, pull a weed, pull your hair. Take her to library, and pick out a movie or book.
Bring out photos or videos and talk about them.

It's hard very hard, and hardest part was when mom stopped talking... She couldn't express her discomfort so much except her facial expressions. I danced with her as long as I could. I do miss her very much.

The neurologist we saw is the only one in town.....Periodically I have searched for one within a 100 mile radius....My plan has been to discuss this with our internal medicine Doctor during my next visit....
I believe you make a valid point...that at this juncture it may be time to discuss her condition with a few friends..

To ReneeFrances...I just posted a message on your profile page. Feel free to post my comment if you wish to.

Just remember that she is still your wife. She can't help it. Remember that it's the disease. How do I cope?- for example, I have a SIL with Alzheimer's and sometimes she is a bit "angry sounding" with me. What do I do? I take it because - after all - I am not the one who is ill - SHE IS and I give her a kiss on the cheek. You may have to also "take it" and I'm sure that you already are. God bless YOU.

Timyom, please reconsider Hospice, they can be a god sent. Most people have the impression that you have to be close to death to be on hospice, but that is not true. I have my husband on hospice at home where they provide you will all medical equipment you may need, send aides out 3 times a week to do showers, a nurse comes out twice a week (more often if needed), volunteers to come sit with you wife if you need time to run errands and respite care (this allows you to send your wife to a skilled nursing facility for 5 nights, once per month), this alone is worth it because it gives you time to yourself to regenerate and take care of yourself. Being a caregiver is hard and all consuming, that we forget we need to take care of ourselves or we won't be able to be there for our loved ones. Hospice will make life a little easier for you and your wife on this hard journey. Peace and prayers going up for you and your wife.

Timyom
I echo what chill47 says about Hospice.
I can not begin to tell you what a difference Hospice made in the way I cared for my Husband.
I got support, education, supplies and I was able to take advantage of volunteers that could sit with my Husband at times when I did not have a caregiver and I needed to get something done or even have a quick dinner with a friend.
The CNA's that came in 2 then 3 times a week to the Nurse that came once a week, more often if it was necessary. The Social Worker and if I wanted or needed a Chaplain and a variety of therapies from art to massage, music, and even pet.
I had medications delivered so I did not have to get them, supplies, equipment were all provided and delivered.
It is worth the phone call to have her evaluated.
And ..this is a biggie....There are two types of Hospice "businesses"
For Profit and Non Profit. the one I chose was/is Non Profit. Personally I think that makes all the difference.
When you choose look at reviews but when you talk to them ask the same questions you would ask of any health care provider. And always remember that if you are not happy you can discontinue Hospice, and or you can change Hospice just like you are able to change your doctor.

I have been a caretaker most of my life. That was my job---or actually 2 jobs-safety, first aid, rescue and paramedic. I even taught First Aid from time to time. Now I'm suddenly thrust onto the receiving end of medical care, and it's not pretty! Being an invalid--in any way--is 10,000 times worse than caring for the sick and injured. My boyfriend, who is normally kind and good, really isn't even 1/10th of a caregiver I've been to him and others. Rescuing the sick and injured was my major job for my whole working life and I loved it. But I see that not all caregivers are caring, or even remotely supportive or kind. Aid, begrudgingly given, is more demoralizing to the injured, sick and afflicted than anything. With the sick and/or injured, caregivers MUST be kind from the get-go. Healing begins with the first kind words...and those kind words need to be steadily coming, whether the person has Alzheimer's or a cardiac condition or respiratory problems or a broken spine. But most people aren't that kind, I've discovered. Most people just can't be that supportive for long, so the victim feels more and more like a heinous burden. So I'm looking forward to death, and I hope it's a lot quicker coming than it appears to be. Another year of being treated as a burden or an inconvenient, inferior person is anathema to me.

Reach out to your local Aging Service Access Point and ask for Caregiver Support. While you are not ready to attend group meetings they can still offer you support individually.