Follow
Share
Read More
This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
I'm sorry jazzy2 . So much to do for him and he's so young. My question is if he has hospice , then how can he be expected to live for years ? I'm new to this so if that's a stupid question I'm sorry. I thought hospice was for the last month or two of people's lives
(0)
Report

Sugarbooger,

Sorry to hear of your plight. I'm concerned about the abuse, even though it's verbal at this point. With dementia & ALZ there is always the chance, down the road, there may be a physical confrontation. First & foremost you have to keep yourself safe.

Your husband, & you, should have an experienced & knowledgeable medical team, with compassion for you both. The team may  consist of a neurologist, a psychiatrist & a social worker.  They are there to support your husband & you on this "new normal." If your husband is suffering from depression & you share any kind of abuse the doctors may suggest that medications be introduced. A social worker should be able to advise you of resources that are available in your state & county; agencies, day programs, seminars, support groups. These are tools you will need to educate yourself & to give you the support you will need as his caregiver. It sounds like everyone isn't on board right now & things will get worse due to the progression of ALZ.

As a caregiver to my brother we both struggled with his anger & depression from day 1 of his diagnosis. True words were spoken, "You can't win battles so don't try," an other, "Less is better."  Both meant the same thing, don't give ammunition to angry outbursts. It takes getting used to but try & ignore them, change the subject, "What a beautiful bird out there!" You do learn to grasp at anything to diffuse anger & that it's ok to fib. I learned to listen to my brother,  reasoning & my tears were useless, saved for myself.

Educate yourself, be focused & stay strong.  Take care of you as well.  This forum is great.  The Alzheimer's Association, available 24/7, is also excellent.  Love & Caring  = A Win! 

Blessings 🌸
(3)
Report

Yes, hospice is for those with 6 months or less to live, so I've been living with the fear of him dying any day for over a year now. His condition continues to worsen but it's so imperceptibly slow that there is no way to predict. The nurse said today it could be weeks, months, or years. From what I've read about dementia, the final stage (bedridden) can average 1-1/2 years but as long as he continues to decline, he will probably stay on hospice. This is by far the hardest thing I've ever done.
(3)
Report

Jazzy, the last mile of life is so hard when they only travel an inch a day. Sending big hugs to you. I know you'll miss him, but not the way he is now. I listened to a song on YouTube a while ago called "Wings of a Butterfly" by Jimmy Scott. Beautiful song that we can hope for all our loved ones as they are leaving us.
(3)
Report

Hi Jazzy.  My aunt had a very similiar situation to yours.   What gave her the most comfort was that they had made a promise to hold each other's hand ( who ever was going to die first ) and she was able to do that.  She had a hard 4 years with his dementia.    She's doing ok now.  Wish you and your husband the best
(1)
Report

Jessie Belle, I downloaded the album. Good songs on there.

Erinm60, yes, I am able to hold his hand, stroke his back, curl up in bed with him. He's up today. Gets up, walks to the table, eats, and goes back to bed but at least he is no longer bedridden. At least, not for now. We started this journey about 5 years ago but the really hard part (incontinence and difficulty communicating) only started about a year ago, although it seems like 10. I plan to keep him home as long as I possibly can, though.
(3)
Report

Sorry just saw this. Good luck. My aunt did the same. I was at their house about 6 months before he died. I wish I had taken a picture. I did in my mind though. She smiled at him and he got it. He smiled back and for one second , I saw their eyes connect and the love they had was there. In that moment. It was great to witness that
(1)
Report

We used to have a "thing" between us. I would say "have I told you lately that I love you" and he would say "no" and I would say "Well, darlin, I'm telling you now." Now when I ask, he always says "yes" and I say "Well, good for me."
(3)
Report

Some days are stressful, I adopted three baby rabbits as pets, and I find that caring for them is work but it comforts me and makes me more compassionate. And I also take a few hours per day for myself like four hours. I sometimes treat myself to sinful foods like chocolate cakes and I find people I confide in and talk about anything with. One good friend is good enough but if I find more persons I feel better. It is usually stressful I feel body aches all over at times. And I feel to run away at other times. But good sense always prevail and I have a long bath or cry or eat more of my favourite stuff and go sleep four hours. Then begin the house cleaning, cooking, pay bills, care him, feed him bathe him etc. I listen to the radio all day and it helps greatly. Mello FM Jamaica plays great songs from the past and have interesting programmes. It helps me cope a lot.
(2)
Report

I think the time is close. The nurse this morning said the heartbeat was faint. He's been in bed all day, no food. I did bring him a protein shake. He took a couple of sips. I, too, play music all day. And cry.
(3)
Report

So sorry
(1)
Report

Jazzy2,

Sorry. Reminisce your wonderful memories during this sad time. Your love & commitment, along with prayers & faith, will get you thru. Blessings
(1)
Report

its hard its very hard somedays just to get out of bed but i know i need to because im all they have.my 64 yr old dad is on hospice at home and i help my mom who has bad COPD ,other health problems, take care of my dad..he is getting worse everyday. his mom passed away yesterday morning and it has made his health go down even more..he wont eat and either he cant sleep or wont sleep because he is so sad then he just passes out from being tired.i hate not being able to make him feel better.i do alot for them because i love them and want to help.they keep saying we are sorry for asking so much of you..its breaking my heart
(1)
Report

Update. My husband woke me at 4am Friday and said he had cancelled his trip because he decided not to go. He has been getting up, walking around, and eating healthy meals ever since. Go figure! What a strange journey we are on.
(4)
Report

Jazzy2,

I am glad to hear your husband is up & about! Your love & caring has made a difference, know that.

Others may offer advice on our loved ones care; telling us to relinquish our role or consider placing. Maybe even giving us sadder news. Those others, even though their intents may be good, are not in our shoes. Making tough decisions are personal ones. We know our loved ones & ourselves.

As caregivers we may harp on all the doom & gloom we face, yukky stuff we hate, behavior challenges 24/7, but we don't give ourselves credit, pats on our backs.

Often I question why I took this role on, "What was I thinking," I ask? I question choices & decisions. Yet I know I've made a difference for my brother in this fight with ALZ.

Caregivers your love & caring makes a difference, but, all you do matters all the time.

Blessings 🌸
(3)
Report

Hi all,
Well, I am coping by having signed up for culinary school and am busy with cooking! So I focus on the doing and the cleaning up
and serving my son! (Sometimes he doesn't eat what I cook so pizza wins out! But that's young adults for you!) However, some days it's not all a bed of roses- but I thought it would be helpful to others to throw out this idea or even some other hobby helps. I also find animals help too, horses and dogs.
(2)
Report

I think of it as a spiritual journey, to be of service to someone who needs my care. Always remember to find and create time for you and things you enjoy. Exercise, nutrition, and rest..you need these. Journaling is very helpful. Hobbies, crafts, music, art, can you enjoy any of these while being with your patient? Be they good or bad, your emotions are coming from your thoughts...can you change your thoughts? Can you turn resentment into joy? Can you give that joy to your loved one? If not, get someone to replace you, you need a break, and your loved one probably does too. xo
(3)
Report

It's all about your frame of mind. If this a decision that "YOU" made. own it. Think outside the box. I bought a Tend Camera from Walmart. I can see her in real time on my cell phone as well as two-way audio. I don't have to enter her room 50 times a day to check her. we can also talk thru the camera. Even at 2 am I can peek at her. I am now less tired. I set 7 pm as our mother/daughter time. Like a visit. I set an alarm to ring every hour in her room. This has her check herself for wetness. If she can feed herself, she can check her pull up. This saves me time. She has hand disinfectant by her bed. Rarely does she use toilet paper. We use baby wipes. Keeps her bottom area clean at all times. I made a telephone list. She is to call 3 people a day. This cuts down me being her only entertainment. I have a magic jack so she has her own telephone and number. Many times family members get tired of being "yelled at" because of their lack of assistance, let them call loved one directly. Be prepared how often that will (not) ring. She has a whistle to blow if I am working in the yard. or she can call me on my cell which I put on vibrate. Once a week I run errands and have someone sit with her. I love me and I own my decision. This is my 8th year. I am 58 years young. Worked all my life. I do it all. It's easy to complain when you see the other loved ones living life and if you miss it, then stop missing it. You are the writer of your bio. If a spouse is pressuring you, leave. When people say it's not that simple.... it really is...
(4)
Report

Sending you and your family love and prayers Jazzy.
(1)
Report

Thank you. He has come back some but each recovery is just a slight step down. It is a long, hard journey but we are taking it one day at a time.
(1)
Report

I just cry sometimes i quit working i care about my 60 year old mother i am 32years old.All my friends are married,nobody understand you i cry sometimes for 3 min. problem with pick dementia i have no idea how long she will live there is no time frame.But i was thinking let's say that i got sick my mother would probably take care of me that's 100%.So i would feel remorse for rest of my life if i would not take care of her.
(3)
Report

Oktobar, I know it is very hard caring for someone with pick dementia. My greatest concern is for you. Your mother could live many more years, and unless she is wealthy, you will be lost in poverty for your golden years. You are wonderful to want to help your mother, but you can help her without sacrificing your own life. There are other options so that you can help her and also take care of your own life and needs.
(1)
Report

"Super Dog". My dogs super dog. I swear if I hear it one more time. Every night we walk the dogs. Every night we see pretty much the same people walking thier dogs. I imagine these people are getting tired of hearing how smart "Super Dog" is. It's the little things that bother me the most. The repitition. I asked her 2 nights ago. Can we change it to "Smart Dog". ? She didn't understand. So , Super Dog ,again tonight
(1)
Report

I like to play guided meditations, and good music, warm bathe,create art, stretching, practice being of service to the loved one...thank thenm for the part they have served in our lives, give lovingly, practice compassion, watch their breathe, and breathe with them, practice good nutrition, take walks. get a good coloring book and colored pencils. make the best of each moment. Feel good about yourself.
(0)
Report

I have begun to try to see the spiritual side of caring for another and trying to see my mother as a soul that will soon be flying free. I am trying to lift myself back up to the spiritual person I used to be. The everyday drudgery of picking up toilet paper, washing all the clothes, cleaning house, doing yard work, and doing my own job kind of chases that ole beyond-this thinking out of me. Seeing the spiritual would raise us up out of the daily misery if we can do it.
(5)
Report

I cared for my wife for 12 plus years with Alzheimer's. the last six years were the most demanding as she didn't recognize me as me. We seemed to be always waiting for me. I sit here now being so glad that I put my desires on hold to care for her. It such a great feeling knowing that I have run the race and I can continue running without looking back thinking of what else I could have done for her. I thank God daily for His guideance and assistance.
(4)
Report

Hi everyone I'm just here to vent today that I'm very alone in my life and I just take care of my mom and don't have much of life no love no relation with someone I feel very lonely and empty inside.😢. So sad
(9)
Report

The feeling of emptiness and boredom is awful. Many of us are right there with you, stressedout.
(4)
Report

Ditto Jessie Belle and Stressed out.
(3)
Report

Thank you for understanding JessieBelle and Erinm60.I sometimes have a scared feeling inside. But knowing that your all there helps.
(2)
Report

This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter