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

Oh my God, She1934. What a nightmare. I am so sorry.

Dear She1934, I'm so sorry that the care of your husband has been So difficult for you. Is there any way you can get Home Hospice involved? It does seem that with his loss of muscle control, bilateral incontinence, and his Dementia, but that he would probably qualify. That way, you might be able to have volunteer help to give you few hours each week, to get out and Enjoy by yourself! God Bless You Love, I'm thinking of you!

Thank you for taking the time to reply and to be kind. During his last hospitalization I was told that his condition does not qualify him for the hospice program because though I do realize that he will eventually pass away from somthing that is caused by the dementia, such as pneumonia from the inhalation of food particles into his lungs, or other condition, they do not consider his dementia to be "terminal".

Do you find it hard to carry the burden of caregiving on your own? Do you wish that your family would help relieve that burden and be more involved in just even the companionship side of things with the mom? What have you tried to get everyone else more involved?

Hi. We should do a conference call.

I am caring for my spouse who has Home Hospice Care. We are both 86. My hardest thing is not being able to help in so many areas. He wants to stay home and I am trying my best. At this time, he will only allow the nurse once a week.
I really miss my freedom. It didn't take much for me, but it was important. He hates for me to leave him, even though he can walk some with his walker. We recently moved into a retirement community and there is so much to do here, but I feel trapped. Also I hate feeling guilty when I do want to get out for awhile. I want so much to enjoy my last years. I feel that I actually lost him years ago.
Hope I am learning what to do and not to do when I become unable. I pray my mind will stay sharp. I never want to make my son feel guilty or that he must take care of me.
I'm trying so hard to be content in whatever circumstances I find myself.
God Bless!

I care for my husband with early onset Alzheimer's and my 89 year old Dad with dementia. Caregiving is sometimes very overwhelming and taxing, but all in all, we do OK. I spend time daily doing something I enjoy. It may be just sitting in my sideyard patio and watching the world go by, or talking with a friend by phone, but I try to make a little time for myself each day. I keep up with my Dr. Appointments just as I do with my 2 guys. I also have a strong faith. I attend church regularly and keep in touch with my long time church family via emails and text messages during the week. I also work hard to take a few minutes each day to read my Bible and pray. It's what gets me through the day really.

I started hiring someone to assist my family when I was in the hospital. After that, because of back trouble I decided to continue hiring someone to help me clean house 1-2 times a month and keep up my yard, both of which I have always done by myself. I adjusted my budget to accommodate that at least for a little while longer until my back allows me to return to doing these things myself.

I always have people offering to help me. That is the one thing I don't do so well is accepting help, unless I can pay them for their assistance. I have been told over and over that I need to accept offers for help, as it is something others really want to do for me. I am still working on that.

My husband attends 2 memory care activity groups each week that are 4 hours long each. I also attend a support group once a month that is very helpful and supportive. I recommend it! It's a chance to share my situation and hear how others deal with coming issues. In addition, I attend online and in person training sessions throughout the year. These have provided me with a toolkit full of resources to use if needed in the future and I keep a file with this info in case I need it.

These are the things I do to keep grounded. About once I month, I have a meltdown when the responsibility of caregiving for my husband and Dad take their toll. But I'm usually back up and running in a short time. I am grateful to be able to care for my guys and am thankful for each new day when I can rejuvenate and take on the challenges of the day!

This is a very difficult and sad situation for you to be in. My situation is somewhat similar. My husband is in the severe stage of vascular dementia. He became weaker and was falling often. Tough ride getting a good mix of meds. After one nasty fall his doctor had him admitted to hospital followed by 4 weeks at a PT care facility, then VNA PT. They helped him get stronger physically so he can get to the bathroom most of the time. Medicare paid for most of it.
Our county Dept on Aging was very helpful. Sent social worker to explain things. In no way is this an easy journey. Keep us all posted - you are not alone .

I feel like I am losing my soul. I just can't take the constant verbal abuse as well as the wide eyed anger and threatened violence every time he doesn't get his way. His sundowning and getting up at night feels like it is sucking the life out of me. I feel nothing anymore except disgust and loathing to have to watch over him every minute, and recoil at his touch. I take our dog outside literally for five minutes and suddenly he can "walk". He can get to the patio to sneak a puff off of a cigarette that has less than a quarter inch on it. Or he scratches the paint off of a newly refinished cabinet that I mistakenly set next to the toilet and "repairs" it with bright blue nail polish. My son tries to let me rest for an hour and he magically appears in the bedroom door asking what I am doing and where I went. He pees and he poops and pees and poops and I get to wipe him while he swears at me. I buried him in my mind months ago and I am just going through the motions of doing loads and loads of urine soaked laundry and he won't settle down at all until I give him his water bottle., preparing his meds and his food, helping him up and down while he complains and falls back into his chair or the sofa and demands to watch sports on tv-but doesn't watch it at all because he has the attention span of a gnat. I know, I know "it's not him-it's the disease". I try every minute he is swearing at me and deceiving me to believe that that is true. But for me it just drags me back to an abusive childhood that I worked my whole life to get over and now it's back with no hope of getting away until the disease releases him and me. There are no sweet moments here-no little moments of remembrance or hope -just ugly ministrations and drudgery. I know how bad this sounds and frankly I just do not care-so any of you out there who are going through the warm fuzzies of this horrid disease can condemn me all you want. I am happy for you! But there is no help for me, no program that we qualify for, no money at all for trained respite care until I get through bankruptcy, and then every extra penny will be used to pay for his needs. And tonight I get to lie awake again waiting for him to get up and demand to be taken home and who the hell am I?

I identify with you 100%, and I wish every day for an end to this journey. It has destroyed every lovely memory and moment of our life together as well as taken a huge toll on our family, in that I have no time to be the grandparent I had been prior to this. The joys are rare and the sorrow is always there.

I want very badly to express my feelings for you but I can tell there’s nothing I can say that will help. I can’t imagine how you are making it through each day. What you are living through makes anything I’ve had to get through so infinitely small as to not worth saying so I won’t bother.
There HAS to be a light at the end of the tunnel for you. There HAS to be some form of relief for you. If not, then I think you should lock yourself in the bathroom or your car as often as you need to throughout the day.
I believe you when you say he works at catching you at something and at sneaking something but does that mean he’s lucid at those times?
It doesn't Matter if he is lucid sometimes because you already know he can’t be reasoned with.
Surely, you don’t have to remain captive if he gets physically abusive. If you become afraid for your life there’s got to be somewhere to report him. Or if you fear what you might do in anger and frustration, also.
Whatever else you do, keep on top of your legal problems so you have that done and prepare for the next hurdle.
In the meantime, try to anticipate what might happen next so you can be ready for it. And try to get some rest in the daytime too.
I know, it’s all too much to keep up with.
This will sound silly, I know, but can you get some headphones to play music for just you? It can help to keep in a cocoon of your own. Just look at any teenager and see how they’re not here with the living sometimes. My thoughts are with you-if I could I would swoop down to save you. No one should have to go thru this and be made to feel this way.
Charlotte

She1934:

Have you given any thought to having your husband admitted to a skilled nursing facility - specifically one with a Memory Care Unit? MC units are for AD patients with mid to advanced stages of the disease. He would have round the clock care from professionals and you would be able to visit him and then go back to your home for nice long respites between visits. I have not read all of the posts here but I'm sure someone else has suggested this already.

does he qualify for medicaid? sounds like it's time for a nursing facility.

When I go get groceries it's like getting out of school was in my youth.
Mom has depression and is too feeble to take a mood elevator. She has gone from not good eyesight to almost complete blindness at times in the last 2 years. She's very hard of hearing so there is a lot of repetition. I've been here 21 months now. I took 4 days off a year ago last April.
Yes, I think about wishing the present time away, and how it will end. I wouldn't want to live like she does. Constant negativity.
"The only constant is change."

I'm so very sorry for your present situation.

Actually things got a bit better in the past month for us. I care for my husband who has had multiple issues. He spent a week in the psychiatric ward for severe depression [contributed to by his chronic PTSD, throat cancer, and then CVA Stroke]. His attitude is much better now and it is livable. He can smile and even when he forgets what I told him we were eating for lunch, supper, ... or any other small items, it is okay.
I have to recall that his short term memory is not there.
But at least he is pleasant about it, unless of course I forget and ask him "Don't you remember what I told you?"

That is the hardest thing for me now. He is more pleasant but they of course couldn't fix the brain. But it is going a bit better.

I still feel like trips to town are short breaths of fresh air and feel a bit guilty for scheduling fun stuff for me to do.
But I always offer to bring him with.

Still struggling with my MIL and trying to get things straightened out with her. Hubby gets jealous when I go spend time with his mom.
I find that a bit weird.
She has ALZ and is under the care of a Guardian now since my husband was her DPOA and couldn't do it due to his Vascular Dementia.

Oh what a wicked world we live in.

I cannot imagine what it is like to walk in your shoes for even a minute. I wish I had an answer.

My husband has dementia and I take care of him 24/7, it is not easy. There are days where I want to just run away from home. Three months ago I enrolled my husband in a senior day care, he goes two days a week and it has been a lifesaver. Two days a week I have the day to myself to do whatever I want.

Well I took my mother to her dentist and doctor same day last week. They are in the same building. All went well with dentist. After 5 minutes, Dr says to her, you can’t drive anymore. Sending papers to the state. She was totally fine with that. Dr said she’s mild to moderate dementia. At least now , after 2 years of wondering , Alzheimer’s? Dementia? What is the difference ? What is the normal? What are my responsibilities? Can she be here alone? All of that stress, has been answered. I think. She’s lived with me for over 20 years. Worked up until 2 years ago. She was very independent. So this has been a huge change

Were either your dad or your husband in the military? I just started getting respite care "for" my husband which means right now I get 6 hours a week to do & go. I hope to use it for painting when things get settled. If either is a vet then contact your closest VA and ask for home health care. They will transfer you and it should take a couple of weeks to get things going.
I have a large family but they are all busy. Two of my sisters live close so we help each other out. It is hard though when I pretty much have to do everything, inside and out. We have been struggling with the riding mower this afternoon and I am beat.
I'm thinking you were born in 1953 and so was I. I am active at church and my husband tries to come on Sundays. If you can get your hands on a copy of Mature Living it has some really good articles in the October edition. It comes from Lifeway and our church gets them for us.
Grace and mercy to you as you continue your journey.

I got my depressed Mom a tiny little dog a couple of months ago...still a puppy 8 months.. I assumed she was potty trained at 8 months- wrong. At any rate having a puppy under foot has taught me a lot of things that carry over to being a care giver as well. I have noticed how my tone with our puppy is important. I have noticed if I ignore the mistakes and praise the accomplishments it reinforces the good. I am trying to treat myself this way.... and Mom too. Why not encourage myself and my Mom and bring a little sunshine in. Things are never going to be perfect ...but just starting every day fresh...
His mercies are new every morning....

I have realized it is better for me to keep quiet when I am running out of patience. If Mom asks me why I am being so quiet ... I tell her that I am feeling tired and need to take a rest pretty soon. She understands tired. Sometimes I go in the bathroom and close the door and sit there...I learned this at a caregivers workshop,,,the teacher told us to make use of the "Rest" Room...just to take a few minutes when we needed to.
I have been remembering how it was being a new mother decades ago- how I felt myself being stretched almost - in - two - as a parent.
Mom had an insight one day that really helped me a lot. She told me that when she would say WE need to do such and such,
that she had felt we were doing things together ---but then she realized I am really the only one who is doing things .... My dear mother, I love her so much.

I feel like my mom is going crazy and taking me with her. I have no joy in my life, I feel that I don’t have a life. I can’t go anywhere or plan anything because my mom will decide she is not going so I end up staying with her. I miss my children and grandchildren. I really resent having to give up my home to move in with my mom and the fact that this is my life. I don’t know how long I will be able to do this I wish there was help for me. I know I am not the only person going through this but somehow does not comfort me.

I get you and I am with you 100%.

Are there funds to place her in the right situation. I am very sorry for your despondency which is justifiable. I You don't provide enough l information to advise further. The only way things will improve is for you to change the present situations so that you can start to regain your life without being chained to your mother. It won't be easy but is imperative. I hope you can find the strength to move forward and I hope you can rid yourself of being so emotionally overwhelmed. Please try to regain your life.

I have my husband go to a senior daycare twice a week, it gives me time to myself to do hat ever I want. It has been a lifesaver.

Today I just decided to really put things into the Lord's hands and leave them there. Fretting is mentioned in scripture...It states Fret Not. I think the Lord is ultimately in control and that being the case I must trust Him to lead me and guide me daily. Today I had a peaceful day...Trusting in the Lord with all my heart/ Leaning not on my own Own Understanding. In all my ways acknowledging Him....The verse says "He" shall bring it to pass.....Being Still and knowing that He is God. LoVe and Prayers to all of you !

"When I go get groceries it's like getting out of school was in my youth. " This describes so well how I feel when I step away. My brother is with my Mom on Saturdays, so it is my one full day break. So when I leave tonight at 7pm I won't be back until Sun at 7am. I am sure that must seem inconceivable to those of you who are with your LO 24/7. I guess we all just have to take what breaks we can, and appreciate the heck out of them...

I am so sorry She1934. We are out here, and we hear you.

I do like CharK60's suggestion about headphones. I often have one ear bud in (in the ear furthest from Mom) and that lets me listen to music, or watch my own movie on my phone while sitting beside her "watching" her movie. Having only one ear bud in means I can still hear and respond to my Mom - even to changes in her breathing.

Respite. Respite. Respite. I live with my mom who has vascular dementia, and I utilize every bit of respite I can to keep myself going, so I can keep her going. We have an inter-generational day care locally that she attends during the week days, and I've recently hired an overnight caregiver for one weekend night a week. With Mom in day care during the week days I have time to take care of the business end of her life (and mine), and on a weekend night I can now go out with friends and blow off steam, sleep in, and get rejuvenated. I'm lucky, my sister and I share 24/7 caregiving, and we still have friends and family involved too, and if any of them are foolish enough to offer to hang out with Mom, I take 'em up on it immediately!

Hang in there. This too shall pass, even though it feels so often like this is all I'll ever be.

God bless you and your mother. I pray you are well in spirit and body. May you be blessed with the gift of beauty traded for ashes and peace that surpasses understanding. I bear witness to being brought through much as a caregiver, and now, standing on the other side, I tell you dear sister, our Lord is faithful to keep promises made. We are not promised no trouble in this life, we are promised we are not abandoned and do not travel alone. Abba is with you always and counts every tear. You are dear, He is always near. Sending hugs and much love your way.