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evansmom99

Member
Joined
Jun 15, 2011
Messages
26
Reason
PALS
Diagnosis
06/2011
Country
US
State
CO
City
Denver
:confused: My Husbands Dr made a referral for palative care and I have to say when I think of it I think about nursing home care. Currently my husband continues to loose the ability to talk and swallow without choaking. The other day I thought I would have to call 911 but he swore he was okay and agreed that he would not eat and watch TV at the same time but that yet has to change.
The worse is the loosing sight of the man I fell in love with, hed is frequently angry for no reason or during a general discussion become angry and blame me for what ever. Nuro Dr feels he has the als dementia as well as Dementia as a result of some years of abusing booze and drugs. Dementia also runs in his family from what I have learned. Today he walked in (remember we both are life long residents of the Rocky Mt region) and asked "what are those white things? Prodding I said what white things, he startes to get frustrated and angry. Then goes on to say the white things that have those things that change color on them.... after much thought I said you mean Aspen Trees? That was it he went back to his computer where he frequently camps out typing who knows what on his computer. I hope it is a letter to our son that I suggested he write to him.
He still forgets agreeing that I can not lift and roll him, and does not want our son to wake up go to school and come back home to the fear that Dad won't be here, or worse yet pass away in the thought of not finding dad alive in the AM. My husband Robert was very clear that he did not want anything no feeding tube, or breathing tube when it comes to the point that he can no long move or speak for himself. He likes the idea of going to a inpatient Hospice where there is more consistancy in Staff, and will allow as much time with him as we want. Plus they have some pretty cool therapies that he would like to do while there to help him relax and be able to enjoy his time with us.
I have learned for this so far that I am angry with him, feel guilty, scared, love him, but can find myself hating him when he says this is all a big mistake and nothing needs to be done. It is such a yo-yo feeling. I miss the man that I married who I could tell anything to, to be able to just sit and enjoy each other, do small things to show we care. In some ways he is rushing to cram a llifetime in with our son, and can laugh with me at times but for most of time is pretty grumpy with me. He has had a hard life and I hate to see him this way and notice a bit more slipping away day by day. I want so much to be able to show him that I do love him, my best friend, the father of our son. How do I help him let go of trying to fix and control eveything that goes on in house and just enjoy our time together as a family....
Sorry to ramble but got a roll that looking at it clearly shows I needed to get it out...
Thanks for listening. and info on Pallative care would be great. Btw we live in the Denver area.
 
I am afraid I will be of no help with the palative care issue, but want to let you know that you have my understanding with the anger that comes with this disease. My Tom is also very angry. Usually at my or any of the children that come through the room he is in. So far he still behaves himself when in the company of friends, but even the neighbours are getting hollered at and I am going to have to go speak with them. I too believe that the FTD (dementia) that can sometimes accompany this disease has taken hold of Tom because explaining his bad behaviour with that "excuse" is definitely a help to accept and cope. I think it is a good thing that the doctors have suggested this to you, at least they are aware. I am going to have to ask for help, but using the FTD idea has given me the strength to accept the bad behaviour and cope. Hang in there, trust that all things will unfold as they were meant to be and you merely have to ride it through. Be strong in yourself and make decisions that you can live with. Your words suggest that the inpatient Hospice is already a favourite for all of you and so I would ask why look further? Good luck
 
First he was just diagnosis Jun 2011. If I told you today what you have there is no cure, get your afairs in order, would you not be pissed off. He's greiving for Christ sake. For right now evansmom this isn't about you, its about him. Your putting the cart way before the horse on this one, Unless he can't walk your actually going to deprive him of life going into a nursing home at this stage, I would wait, you might find out he is a slow progresser and live 20 years no one k nows that until it gets underway

ask for an antidepressant for both of you

Also you can only be there when needed, learning to die is a process that we take on alone and seek help when needed, and don't want help too, its a tuff thing to swollow. You might want to read some on death and dying, there are some in that that shares in ALS.
 
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You need to get ahold of the ALSA in the Denver area they will have bunches of advice and support for you. Everything from equipment loans to in house care referals. they put on clinics about every 6 mo. the vendors pay for everything and are acturlly a big help. I live in Kansas but travel to Denver for these clinics and such.( i have relatives in the area) It is a big adjustment to say the least.
 
I'm glad you wrote, Connie. Lots of useful details. So far I agree with everyone's advice, and have a little of my own.

Sounds like his ALS is top-down, with possible FTD, right? But, of course, you're only 12 weeks into it, so maybe it's hard to tell if it's FTD or just the stress of dying before having a chance to get your son through to manhood. THAT's the loss that a man with a young boy grieves for. He wants to avoid the Cats in the Cradle syndrome where his son grows up without being close to his dad.

On the plus side, Evan will grow leaps in the coming months. So, with Robert's permission, assign Evan some caretaker duties, appropriate for his age. This gives Robert some control over his world (which is a big part of what ALS took away), let's him be with his son, and helps the boy grow.

My kids, 13 and 16, crushed pills, mixed meds, and fed their mom. They also operated the Hoyer lift. Sometimes, my girl wiped mom on the toilet. But we're a medical family with no qualms about naked bodies. Robert and Evan might not want anything to do with such things.

My PALS was bottom-up, and never peeped a word in anger. But she was always and forever that way, even before ALS.

Go ahead and name it FTD, if for no other reason than to give you a handle on it. Naming a problem is very comforting, and useful.

See a flown blown shrink-iatrist. Definitely ask for anti-depressant for both of you. There's no need to be more bummed than you have to be. Mix it in applesauce for easier swallowing. We found cinnamon much better than sugar to cut the bad taste. Perhaps a psychiatrist will also prescribe a mood stabilizer.

PALLIATIVE CARE is all about making the patient comfortable, both physically and emotionally, when there is no cure for the disease. It's the second phase, a dividing line. Most all doctors practice allopathic medicine: to prevent, treat, and cure. But some clinical TEAMS specialize in palliative care, and know how to keep the patient comfortable without trying to "treat" an untreatable disease. It's a mindset as well as a professional skill.

Your ALS team or hospice team should know all about this. Having a professional ALS team is so much better than going it alone with separate MDs.

If he wants to go inpatient for the hospice care, that's his choice. It's all about letting him make choices and control his world.

REGARDING THE YO-YO FEELING: If you can, spend those hours considering him to be your patient, not your husband, and the emotional lability is merely a symptom to work around. If you can compartmentalize those feelings during those hours, it will give you more strength so you can enjoy some "husband" time.
 
Dianna..... she said her husband has been diagnosed with FTD. The anger that comes with that is beyond grieving a disease. The frontal and temporal lobes of the brain... the ones that control appropriate social behavior... atrophy. People with FTD have no compassion, no empathy and no impulse control. It is hard to explain the difficulty of living with a person like that when at the same time you are responsible for their safety and well being.

Connie... palliative care is basically the same as hospice. I think more doctors are starting to use that term because of the "imminent death" connotation attached to the hospice term. You can get help with day to day care, meds, etc without having to drag him out to large numbers of appointments. I found with Glen if we could keep him closer to home he would be less agitated. I do agree that finding a psychiatrist with an interest in neurological disorders could be very helpful. As Glen's dementia progressed, the psychiatrist was a huge help in adjusting medications and finding ways to work around difficult situations. Another idea... if there's an Alzehimer's agency nearby, contact them and find out about any day care available. The best thing we did was get Glen involved in a dementia specific daycare. They were able to accomodate the soft food diet, the center was locked to prevent wandering, and yet they had indoor and outdoor activities, music, games, etc. ok, I still want to know how Glen played foosball but apparently he did. He went to "Club" 3 days a week which let me recharge my own batteries. It's worth checking into anyway.

Good luck, and holler if you need to vent!
 
Katie it says Nuro Dr feels he has the als dementia as well as the other, as if it was done in passing. I know what dementia is. I also know what being told of this desease does to a person. One can't change the face of Dementia isn't going to allow him to not be mean to his son in wanting to cram a life time of things. There would be a point within these "things" that he is doing with his son that would make him angry. But he can shut off his grief for the sake of his son which apparently he does, grief would make him lash out at the one most likely he feels will forgive him.
There are people who have been told something like this and they go out in rage beating, hitting, anyone and anything in site to release the anger of feeling hopless, they can't run, they can't crawl in a corner their stuck. It doen't mean they have dementia. ALS/FTD from my experience is opposite then what we think, dementia would show first then signs of ALS would follow. I don't know that as fact and only recall reading it somewhere.
Regardless if he has it or he doesn't dementia does not k eep you from experiencing fear it may even enhance it.
I hope you find your answers, Connie, as someone mentioned ALSA , a bit of time.
BTW I live with a person like that right now, she was angry, lashed out, she was on her vent before she finally calmed.
 
FTD dementia symptoms do show before the other ALS symptoms but are commonly misdiagnosed... so it's only in backtracking that we as families figure out that what we were fighting was in fact dementia. I cannot begin to explain to you the frustration of believing that someone should be able to turn off the rages.... or the sadness of finding out no, they can't. And all pushing them to do so does is make matters worse.

I have not seen anything in your posts that indicates that your mom suffers from FTD. In fact you indicate that she is quite clear in her grasp of what is happening to her and her opinions of what wants and does not want. I would not begin to tell you what it is like to be caregiver to a PALS with a vent. I don't know. Glen did not want one, and never reached that stage anyway. You say you have experience with ALS/FTD... have you known someone with, tried to take care of them, tried to work around the fact that someone who was the love of your life now openly dislikes you? The fact of the matter is that an FTD patient no longer has the capability to know they are hurting their son's feelings, or making the stranger they're staring at uncomfortable. Trying to deny that fact only makes the caregiving more difficult and painful.
 
Hello all
First off I want to thank you all for your responses, it really helped. I think I was not clear in that when I was contacted about Pallative care, a nurse friend said they will want to know what nursing home you prefer. For myself, Robert and Evan that is not an option ever. Robert has made it clear that should he find himself unable to speak, walk or take care of himself he wants to go into a inpatient Hospice. He likes the idea of consistent staff not to mention all the things they offer like music, massage, pets, energy work, etc. As I said he does not want Evan to have to wonder what is happening in the next room. Both my husband and I have had the opportunity to be a caregiver for a family member who was on home hospice so I can see where he is comming from. I think he wants to be at his best when he see's his son and spend that time on his terms which is fine with me.
For myself I do know alot about death and dying (kubler Ross) was req reading for my BS degree in Human Services. I have worked with many dealing with grief and loss not to mention dementia and mental Health disorders. At Roberts 2nd opinion appointment today we were able to attribte the Dementia and outbursts to the started about 6 mo's before I noticed changes in his voice, then later swallowing. Before this Robert was such a laid back guy who would drive me nuts when I was up for a spat and he would be a calm cool guy, he at that time was they type of guy you would want for a negotiator or along that line a guy who went to college when he was 47 years old and graduated with Honors, very smart guy with a mind like a trap. It became clear there was and is a continuing problem with the outburst he no longer has a restraint on who is around or even where he is. Thankfully we have very understanding friends and family. That is where my guilt comes in because I thought he was just being a mean hateful manI knew something was wrong got him to finally go to the dr over a year ago, they treated for a sinus infection, then to a allergist, who then 2 ct scans later a referal to neuro Dr. who in June finally had an answer. He has no control over his moods, will laugh, cry then go into a huge hissy for no reason. Gives pause for thought as to who was not being understanding or even consider it was out of his control. MY BAD!. I was prepared for a stroke, tumor growth, cancer but ALS did not enter my mind. Then to learn about als of the way it takes movement voice and independence was a thing I thought I could cope with but now I learn that the moods will most likely increase the memory will fade. None of this was in our plan to raise our son send him to college and quietly retire somewhere to watch sunsets and go into town and hold hands.
Dian na I never had or will have nursing home plans for my husband. The three of us talk, and keep the communication open and walk away when need be until we can go back and talk. Today my husband wished to drive a car one more time, and go drive go carts with Evan....
Thanks all for telling what Pallative care is,, it clearly is not time for the Nursing home.. Also we went to the Rocky Mt als seminar last month and loved it.. joked about who would get who off the floor if we both fell...
Once again thanks alllll promise no more long posts.
 
GOOD ON YA! Looks like you've got a really good handle on some tuff stuff.

Yep, there are so many people who mistake mental/emotional problems as just "being mean." I have some pretty bad bouts of big-anger myself, but I have taken anti-depressants for a decade, so that helps a lot. In my case, it's a disability of some sort--I think that over the decades, my RESILIENCE GLAND was just used up and died! (So I take "Stupid Pills" that help me put up with the stupid stuff my boss says.)

Expecting an FTD patient to control their outbursts is like telling a blind person to "just focus harder."
 
:p
That is so well said..
Forgot to add I take antidepressants to help with the stuff going on not to mention for pain control. Dr offred DH them today we are going to talk about it and look at which are offered and best for him. Had to do on someone who has long history as a Mental Health Worker, but I am sure he will come around.
thanks again.
 
Connie... as harsh as this sounds... at some point you're going to have to be the one to decide what's best for him. One of the things lost with FTD is executive function. Basically this means cause and effect is gone... so the person will put food into their mouth while choking, etc. As a result sometimes we as caregivers have to decide I'm sorry sweetheart.. this is how it's got to be.. and work around them. Glen knew his antipsychotics were to help him sleep. He did not know they were to make the hallucinations go away. (I think he liked his beautiful creatures). You will become very creative, as it will be in his best interest and yours.
 
I have the utmost respect for Katie and her opinions. She really helped me better understand the changes I was seeing in my husband. The FTD is much more frustrating than the physical changes. Connie, I think this forum is here to help us cope with our feeling and emotions as we try to support our PALS. It isn't here as a spot to criticize decisions that families must make to fit their circumstances. Every one has a different situation and our feelings can be very different. That is OKAY! Having just lost my husband to this monster, I can relate to your feelings. There were times when I thought I hated him too. I realize now and thank God, he and I talked about this before he died, it wasn't him I was angry with. It was the loss of our life together and the lack of control I had to change what was happening to us. Don't be so hard on yourself. Realize that your husband probably lacks the ability to manage his emotions. That doesn't help much, but it an explanation. In the end, my husband died peacefully at home in our bed with me holding him. Make decisions as they best benefit your family's needs.My prayers are with you and your family.
Janis
 
Connie you provided more info then the first post I read and agree with Mike that you seem to have a hold on stuff that I didn't see orginally. I am a serious advocate and in reading your first post I replied to what I read. Everyone's situaion is diffrent yet much the same. My grandmother who died in Feb this year had dementia and my dad was never ever understanding to her meaness. She was never mean to him nor me but those people in the nursing home, they moved and she'd bark at them. My dad thought it was embarrassing, I thought it was interesting because prior to this she wouldn't say sh it if she had a mouthful. Very polite, mannerly distinguished older woman who one would think had a lot of education. She in a short time turned into a bar brawl kinda gal. Well not that bad but sometimes made u wonder. She'd only look at me and say, "Di, I don't seem to be processing things like I use to, I'm old so I have an excuse." She knew she wasn't right or seemed to.
I am glad your going to try to keep him at home as long as you can. Your going to make a lot of changes as this is still jus beginning.
 
This may go to moderation but it's worth the weight.... Connie there is a book titled "What If It's Not Alzheimer's" by Lisa Radin. She explains the differences very well. I lost both my grandmother and my dad to Alzheimer's and FTD is a different kind of beast. There are a lot of very practical day to day type suggestions that I found very helpful.
 
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