For those of you who are caregiving and living with the person you are caring for 24/7, how are you coping?

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.

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.

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."

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

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.

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

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.

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.

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 🌸

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

My husband has been under the care of hospice for over a year now. The nurse says this is just a progression of the disease and I think she is right as he has been going to this same respite facility for 6 months and used to enjoy it. I think we are just entering into the last stage which I understand can sometimes go in for years. This is the bedridden stage. I don't know how I'm going to cope. He is so heavy and I am so tired.

I am just starting on this journey with my husband's dementia. I agree with NoJoy3 as far as the sadness. But am also experiencing frustration. We have no local support group. I've contacted a couple of local agency's. That got me zippo-zero. I called one of my husband's physicians today requesting he be put on anti-depressives and I guess I said the wrong thing. They told me if he talks about ending his life he needs to go to ER. Well, my husband wouldn't go and if I got him there, he'd walk out. So in essence they said they could do nothing for him. That was frustrating and disheartening. I cope fairly well, although I get so tired of repeating myself. Sometimes I get short with him. But what's worse is when he verbally attacks me. He gets all worked up and then I get worked up and cry. How do you communicate?

Jazzy, Sorry to hear about your respite, hope your husband will be ok, you as well. You may want to visit his doctor for an evaluation if you don't see a return to his old self. Sometimes it's just a change in the same old that can affect our loved one.

We have to ask ourselves if a respite, or, any outside care is a respite for us? I know I always am concerned, whether it's a facility, day program or even an aide. The combination of this d*** ALZ, my brother's old dominant personality & inexperienced personnel (who always claim otherwise) is not going to make a stress free "Zen" experience for me.

So what is our recourse? If there's not a loving & willing family to share caregiving we have to trust others, yet with caution it seems.

The trials & tribulations & no book or seminar "Tells the Truth & the Whole Truth." We just do the best we can. Blessings 🌸

Heaven help us all

Jazzy, I am so sorry. It is the bad thing about respite. I was going to take a day of respite today, but then my mother fell in the kitchen. I called the EMTs. They had her up and patched in no time. They were wonderful. I still took some time to go out to eat, but I didn't want to leave her alone for very long.

My mother has been getting weaker, so I'm reluctant to leave more than a few minutes at a time. It is making me a nervous wreck. I try to just put it in God's hands, but that is hard to do with my mother, since her needs come often. I am finding myself hoping she passes quietly in her sleep while I still have a thread of sanity.

I'm not coping. I took my husband to respite care for 4 days and when I picked him up today, he was comatose and impossible to get out of the car and into the house where he immediately went to bed. He got up from r able it 30 minutes to eat dinner and is back to bed. All my stress came rushing back.

I'm not doing good today. My mom who I take care of doesn't let me do anything without her. I went to storage today and I told I be back soon and she coming to look for me screaming to me where were u. I feel so depressed she never wants to understand me. She was in car not far from me.

When H is really I'll I have no trouble w catering. But when improving and complaining about everything I find it hard. I try to spend my days at hospital but he wants me to do their job. If I could he wouldn't need to be there. And he is great at "guilting" me into stuff to the point it has become a word we both use in conversations with each other. Then comes the fight that he needs rehab before coming home. I'm past exhaustion!

Follow up from needs asseesment. She's not that bad. Thank you God. Nurse said she could definitely be left alone over night. When we go out of town ( planning December get away ) they will come for 2 hours a day. To bring in food , walk dogs , help with anything she might need. She dresses , bathes , takes meds, all with out assistance. She does have dementia but apparently not as badly as I thought. They will call every morning at to make sure she's ok and be here in the afternoon for 2 hours. She does have long term care. I don't think that would cover this , because she does so many ADLs . Regardless. I'm just happy I got good news.

To answer the original question, sometimes hour by hour , and my mothers still fairly functional. Getting a " needs assessment" done tomorrow for clarification of what I can , she can do. Meaning can I go away for a few days? I already know the answer. No. But. She still bathes , eats, dresses, takes her meds. But she has dementia. On aricept. Looking to get paid help in here so I can get a break. Funny story. The person who was supposed to do assessment today , forgot.

JennaRose What is a transport chair? I'm having increasing difficulty getting my husband in and out if the car.

Yesterday was a good day. Mom had a doctor's app't and between the walker and the transport chair it was easy to get Mom inside my car and into the medical building. Nothing is close where I live (rural area) and my Mom and I enjoyed being out.

I just get nervous about Mom's catheter and switching the large Foley bag to the leg bag. Sure enough when we returned home I went to empty the leg bag and parts of it came off! I don't know if my Mom's pants rubbed against it too much or what happened?? It was attached with 2 good Velcro straps. So I just switched it to the large bag.

Today was not a good day. Mom pulled the catheter out and I called the nurse (we have a nurse that comes twice a week). Nurse put in a new catheter and checked out Mom. I am simply not comfortable with her wearing a catheter. I would rather change her "pull-ups" and clean her.

Tomorrow is another doctor app't with a urologist so I am hoping he will say she doesn't need it anymore.

That is good to know Jazzy2! My small town fire department of volunteers would not be happy though!

These days my brother prefers his couch for everything it seems. I notice he is slouching a lot more these days, even in the car. I have to prop him up to sit straight to eat, he will not do the table & chair thing at home. I have to encourage him to sit at the table, turning off the tv, hoping he will focus more on eating. It doesn't always work, he may stand to eat, but I'll take that in lieu of sitting/slouching all day. At his day program he sits round robin, go figure???

We've had no falls, Thank God. If we did, I would have to call 911, I could not pick him up, he doesn't get the "let me help" thing, I'd go down. If he slouches to the floor, the couch is low, he can get up, but it's when he wants to. If 911 ever has to be called, I know that means hospital, everything is starting to be an "ouch" moment, right up with his favorite, "no." Yet he can move fast!

I know a "when" time is coming & I am dreading it for him. I am envisioning an increase or new meds, being in a wheelchair rather than ambulatory, concerned about the experience & knowledge, as well as compassionate staffing. Do we just let these concerns go? How?

The dilemmas of caregivers has no end!

Blessings 🌸

Thanks Jazzy2. Good to know

The fire department is also willing to come help lift them off the floor if you don't need medical help. They've saved me more than once.

Hi John, I've been lucky so far. She's only fallen once. I got her new shoes after the her fall, rubber soles. If she does fall again or has a medical emergency , I'm definitely going to call 911. I can't see at night while driving. I'd be a nervous wreck driving her if she was really sick and ambulances have a lot of life saving equipment and trained personnel that would be a lot more helpful than I missing an exit because I'm a wreck. But got add ,  my mother is 79 ,  worked and drove up till October of this year. So your situation is so much more serious.   Good luck and God Bless

JessieBelle, Erinm60, I always felt that it was better to be safe than sorry if Mom falls. That lead to a couple of times when one of the EMTs reprimanded me for calling. One time she was laying on the floor after falling on her back and he was just frustrated with me because I called. They took her to the ER anyway. After those experiences I try to use 911 only if there is no other option.

Where to begin?? Im angry most days these days. My mom suffered 2 strokes. Has dementia. That being said, the illnesses haven't affected her personality for the better. If she would not do things that are causing her rapid decline that she completely understands she's doing but wont stop because that feels better, to her I would be less so. Case in point..I have to prop her head up everyday because she refuses to hold her head upright or keep it NOT turned so far to the right that it cuases such pain to turn it straight ahead much less side to side to loosen it up. Will then stare at you as if that look could send you to the depths of hades bc you ask her to not do that because its hurting her more. Such fun...Im at the point after almost 4 years that if she declines to the point of having to get a feeding tube, bc her good hand is almost completely contracted from keeping it closed pretty much anytime her hand brace isnt on, that im just gonna place her in a snf or group home. My daughter graduated this year. All i think about these days is the last few years I've missed with my darling girl giving all my attention pretty much to a mom that could care less about her health but completely expects to be taken care of because its her right I assume. Im so tired of being a caregiver. Im going to try to move to Seattle or north Virginia in a few months. This journey is over for me. As bad as I feel for her, I've given enough. She wont even TRY. Im not asking for miracles. Not for her to walk, get better or anything so drastic. Just dont internationally damage yourself further and get upset when you have to be in more pain or play helpless when it suits you to pull on heartstrings so you dont have to go to a home. Im over it. I know, the stroke and early onset dementia play factors in some of the behavior, but why should I keep being treated like a servant or slave bc you didnt and still wont take care of yourself? 2 weeks before she had hee first stroke, a nurse came to see us. Told her if ahe didnt make changes and take her meds this could happen. Take a guess how thst turned out? Im tired.

So sorry. Agree with JessieBelle. Praying for you and your mom

John, I call 911 when my mother falls. This is because I can't get her up anymore, now that she can't help. I don't want to pull or push on her because I'm afraid I'll hurt her. The EMTs check her out to make sure she is pain free and uninjured. If anything is wrong, they will call an ambulance. If your mother hurt her back, it may have been the perfect thing to do. It would give her care while giving you a short break from the hands-on care if she needed to be admitted to the hospital. They may have also recommended rehab to help her regain some function. A good thing about this is that it would let you have a break from caregiving. Unless my mother was on hospice, this is what I would do. Sometimes we need a break. The ambulance will cost some money, but Medicare should cover most of the expense.