Are you in the same position as I am?

I'm the caregiver to my mom who is in last stages of Alzheimer's. I am her c/g 24/7.

I'm 45 years old. My husband left after 21 years of marriage, after 4 years of having my mom move in with us.

My only daughter, 18 y/o can't stand to be in my house for 10 minutes.

My mom is pacing back and forth for the kitchen to her room every waking moment. She asks to go home all day long, asking me questions that require answers but are unanswerable. Mumble jumble.

I'm sure I'm clinically depressed. I am tired all of the time. I have no motivation to do anything at all. I'm already on anti-depressants.

Mom's on seroquel, xanax, tranzadone, just so many things. Anything I've heard of to try, she is on.

I don't know what to do now. I don't know how to cope. I'm at the end of my rope.

Any advise, suggestion, etc. are appreciated.

Hi Robin. It is time to make yourself another appointment with your doctor, and to look into assisted living for your mom. I could not take care of my mom 24/7. i might have killed her. Killing yourself through stress and grief and anger and depression isnt a good answer either. peace.

Oh dear. I am not in your same position, so it is hard for me to give advice.

You've sacrificed a lot. It is hard when family doesn't "get it". I can understand wanting mom to be there with you. However.. is this because of an emotional need to have her stay with you or because of financial worries? Is there no way you can get additional help, either with someone coming in to your home or taking mom to Adult Daycare or something of the sort?

As much as you love your mom and want to do everything for her, you are not helping yourself very much, it seems. I think you need to think about that a bit. If you're exhausted and depressed, you can't take very good care of another person. You are important, too.

I hope you can get what you need. Please forgive me if I "overstep", it is just truly my desire to help you somehow.

No one should have to be a caregiver 24/7. It is much too stressful. One solution is to find a placement for her but if that is not possible due to financial considerations or just because you are not comfortable with it then you really need to see about getting help in your home so you can spend some time on your own.

The ALZ association can provide information on what types of services are available. I am sure there will be others along that will know about services in CA.

You need to get some help because if you become ill then there will be no one to take care of your mother. We have to take care of ourselves first.

I've never been a 24/7 caregiver. Earlier I didn't have it in me, and now, in addition to that, my father is beyond anything that a civilian can do. He needs professionals to look after him.

Sounds like your mother might be in similar shape.

I agree that if you can swing it, it's time to think about placing her in a facility. If you can't, look at options for in-home professionals.

I'm a big fan of geriatric care managers - I engaged one two years ago to help me navigate the system and it's been a godsend. A good one can put you onto resources you never knew existed.

You also need to vent. The blog is a great outlet but feel free to vent here, too. And if you can, look into caregiver support groups in your area. The local chapter of the Alzheimer's Association can help you locate some.

Hope this helps.


Best,
Alan

I can't tell you how many times I've called Alz.org and they have no information for me. I have to go out and find it myself.

I do have someone to come in and watch her if I have an appointment or something planned, but it's $20./hour. She does have some income to cover it, but, well, for one thing, by daughter has been very mentally abusive and makes me feel guilty for doing anything for myself and not paying for her rent and school. But, that's a whole other story.

I do use a caregiver service about twice a month, but it seems to not be enough anymore.

I've wanted to keep her here until the end, but I don't think I'll be able to do it. Maybe if I get more meds for myself???

And where to I even start looking for a place for her to go, if I go that route?

If I just get through today, I feel that will be a big accomplishment. I know I will. But it's going to be a long day. It's only 2 p.m.

OK, well, I'm not sure how old your daughter is, but I am assuming she is an adult if she is paying rent, so she must learn to be an adult and that mom can't pay for everything all the time anymore. Sorry, maybe overstepping again.

I understand what you are saying about Alz.org. I have found them extremely helpful sometimes, but there are times when they sort of drop the ball. Sorry to say, but true.

Maybe you can give this a try: www.eldercarelink.com. Or try contacting the department of aging for CA or a geriatric social worker in your area? There are options for help. You should not pay for this, but it should come out of your mom's funds. I believe a social worker can help you with this.

Let me know if any of this was helpful. I'll try to figure out more "leads".

Take care of yourself!

What part of alz.org have you been calling? National hotline? Local chapter(s)? Let us know. Maybe we can get you a better steer.

I understand why you feel you want to keep her at home. My goal was to keep my father in his home to the end - for the sake of his quality of life and also to stretch and maybe even preserve some of his nest egg. But the situation has gotten beyond that and this week, I'm going to file his nursing home application. That'll be followed by a big disruptive move from New York to Maryland. And if he lives three more years - a strong possibility - every cent he saved in his life will be gone. I hate to have it happen that way but I've had it borne on me that there's really no other way to respond. So I know what it means to be stretched too thin and out of options.

Twice a month doesn't sound like enough for a caregiver service.

You might want to see if Medi-Cal will provide some form of subsidy for in-home care. In New York, reimbursement for community Medicaid is much more liberal than for facility-based care. For example, there's no penalty period for asset transfers - once the patient qualifies, the subsidy is immediate.

Care managers and elderlawyers are very good at navigating the system and finding options like that.

Great advice from Alan, there. (Nice way to "hit it out of the park" Alan! )

After a year and a half of trying to get help, I found a program called Evercare Home and Health. I am not sure if this program is national or just Florida but if your Mom qualifies for Medicare, they provide this program. I get about 15 hours of caregiving for free, plus free food, wipes, depends and other services. The number is 800-791.9233 or go to evercareselect.com. Again, I am not sure if this is just in Florida but it doesn't hurt to try. Getting some help so you can get out of the house will help relieve some of the stress.

Rockin, I moved in with my mother, Dec. 08 and by May was extremely stressed. I knew I needed help but did not get anyone until July. After more nights that healthy without sleep I now have night sitters and someone part of day. I still deal with Mother most of the time but the knowledge that someone else will be here soon helps me make it.
You have my hand in giving this more than I was able too but you sound to be in a very stressful situation. Please tie another knot in your rope and go to your doctor and then find help with your mother. You and she will both benefit. If you can place your mother, maybe it is time to look at that option. Most places have a social worker who should be helpful in advise. If you do not find one first then look again. There are nice ones out there.
Please let us hear how your are as we do not want anyone "at the end of their rope". chat or post as we are here to help by sharing both ideas and sympathy for a difficult life situation.
Sheryl

Robin:

You've gotten some good advice. I'm really sorry you're dealing with the emotional abuse from your daughter. She's 18, she's very limited in her understanding, she's very young. Point her to the direction of your husband for financial support.

My own daughter was 18 when my mom was in the last stages of AD. She also was not very understanding of the situation and couldn't understand why I couldn't spread myself a little more to cover her needs as well. I did my best to cover everyone, but it was not enough to satisfy everybody. I found out later, her anger was based on the fear of losing me, she saw I was going downhill along with my mom and that scared her.

She's now 28 and I'm going through the same journey with my dad and his AD. My daughter is more mature now, is a nurse and can understand why I'm not so available to her, but I still see in the fear in her eyes and know I that she is worried about me going downhill again.

Maybe if you can sit down and talk to your daughter, if she will listen, tell her you are doing the best you can. What would she do if she were in your shoes. Still though, point her in the direction to her dad for help with finances.

I hope you get the help you need and if there is any other family/friends who can help you, this is the time to tell them you need them now. No one person can do this.

I noticed that you LO was on seroquel, xantha, and trazadoan. My LO were on the first two without any benefit. She did not have trouble sleeping at night so no trazadoan. I am on that one. But now the Dr put her on reserdal and a dramatic imprivement in her personality. I strongly recommend that you tell the DR that your drugs are not working. It is quite common for AD patients to go through numerous drugs before they find the one that deoes the best job. I am a strong believer in telling your dr that a change is needed.

To RockinReddRobin, I am not a caregiver but many caregivers of all ages chat in the chat room in the evenings. When you need a mini-break, log on and join us!

Iris L.

RRRobin, I've felt depressed and down and at the end of the rope a lot, was even that way this afternoon when nothing I did for Mom would get her unstuck from the repeating and slow walking wandering. Then I got her calmed down, she got stuck on the weather forecast of the beginning of rainy season, and she got happier. As did I.

Then I looked here and saw your comments, hang in there Robin, we've all been where you are or know someone who has!

Agree with Iris too, the chats and the people in there are the best!

Hi Robin,

My heart goes out to you as you try to cope with all of these situations. It's past time for you to get some help with your Mom. The area agency on aging for your part of California should be able to assist you.

Many of the NH's have short-term respite care for people who require assistance. You might want to look into that. It would be a way for you to get a break and to have a chance to think about what the next step should be for your Mom and for you.

I stayed with my Mom and Dad for a month to care for them when I saw how bad things had become. I couldn't handle it anymore - their doctor hospitalized them involuntarily and from there they went into a NH. I felt like a zombie. I also suffer from depression and know how hard it is to even get out of bed some days.

I wish you the best and will keep you in my prayers. You can't neglect your own needs because you won't be able to take care of your Mom. Please don't give up - we are here for you and we care about you!!!

Hello I am a 24/7 caregiver to my mom as well who is in the ladder part of Alzheimer, and is in hospice mode as well. I have been doing this for over two years, I have allocated a total of 31 hours of respite through funding through Medicaid , and senior service funds through my county, look under senior services in search engines for your county, and start there finding respite services for yourself, You have to take care of yourself, in order to be a healthy caregiver, wish you luck, and support. Lori

I praise anyone who can do the 24/7 care. I knew from the beginning of my journey with my mom, that I couldn't take care of her. She'd get upset with me and the same on my side. We just jumped in and found a great ALF and moved her. Do know many can't afford that type of help, but plse know there's other options.

As you're finding out it's truly exhausting and now your health is at risk. How would your parent survive without you??...therefore, you NEED TO TAKE CARE OF 'YOU'!!!!!

I wish you the best and knowing the experienced people on these boards, you'll get help and guidance. Stay close and you'll learn options. Do not give up, but plse take care of YOU FIRST!!!!

Best to you!

From KML
[ I found out later, her anger was based on the fear of losing me, she saw I was going downhill along with my mom and that scared her.]

This is a really good point. I can say that I myself have had this feeling about someone else in my family with their parent, seeing how they are going downhill too, and it gets to be too much to witness.

So, I am sorry if I was too harsh. She is only 18. That's still very young. I'm sorry I didn't realize that before. Must pay better attention...

RockinReddRobin,

I apologize in advance if I sound too bold or there isn't a lot of empathy for the rest of your family's situation. Right now, it's you that I am most worried about.

If you can pull your mind away from your caregiving responsibilities you will see a lot of family dynamics coming into play that are wasting your valuable energy. As I read your first message, I picked up on some of this:

- Your daughter is 18 years old and she watched her grandmother move in and her father leave at 14. This is a dynamic age for children, especially daughters when the father leaves and I would bet mega-dollars that he didn't leave quietly or without leaving a lot of scars on both of you. I'm guessing your daughter feels the break-up was your fault and she's angry at you. In her eyes, she may feel that you should be paying for your sins of chasing her father away and she is just getting her due in the form of her rent and expenses for her life. Honey, don't fall for this. She's a big girl (or she should be). She's got a father out there, let her live off of him for a while. Coming from experience, this will hurt for a while and she'll be like a hurt dog, biting you whenever she can, but you can and will live through it. And so will she and she will grow from the experience. It's time that her father steps up to the plate and lives up to his end of being a father.

- You need to forgive yourself and accept the past as the past. You can't change it, but you can grow from it - and the first part of growing from a difficult past is to take good physical and mental care of yourself. Nurture the hurting parts just as you do for your mother, but give yourself an extra portion.

- Contact your church, if you attend, or find one in your area. Talk to your local minister, have him (and his wife) over for coffee. If they're as good as they should be, they will take turns ensuring that your mother is comfortable and away from you so you have a chance to cry and vent a little. If they're as in tune as they should be, they will probably know of someone in the church who needs a part-time job and has the temperament to be a caregiver, and they will put you on the prayer list (letting you be either anonymous or using as much information as you are willing to share). Believe me, the prayers of others will help you far more than you will realize.

- Once you're lifted up in prayer, stay lifted. Again, nurture yourself. Take advantage of every opportunity to get out. Claim your life back one day at a time. Every time you do this, you will feel a spark of positive energy, but don't turn around and give it away to someone else. Claim it for yourself. Forget what your daughter thinks, she's an angry child. Let her take her anger elsewhere, you don't need it in your life as I'm sure you have plenty of your own to deal with. If she can't make her ten minutes in the house a positive experience, tell her to stay away until she can. It's your house and your life, therefore your rules!

- Spend some time and money on yourself to 'refill your pot.' Haircut, bubble baths, counseling sessions, get the right meds, whatever it takes. Pay the $20 an hour if you have to, it's worth every dime. Rationalize this and make it your motto: if you don't make it through this no one does, and it doesn't sound like anyone else is ready or willing to step up to the plate to take over. Talk positive to yourself in the mirror and remind yourself that you've done all that you can, likely all that you know to do, but it's time to pull back and strengthen yourself so that your brain can take over where your heart has been all this time.

- Remind yourself, over and over, you're only 45!! I have to tell myself all the time that I'm not 82 (Mom's age), I only feel like it most of the time. But this will pass, just as she will, your daughter's anger will, yaddi-yaddi. Believe me, I'm not making light of the woes everyone around you has, I'm just trying to remind you that life will adjust, you will go on, and life WILL get better. Daughters DO come back and apologize or make peace with their mothers, especially after they've done some growing up on their own. If you prepare yourself for this (in a good way), you can make your relationship better than ever because you'll be setting the rules for what you will accept from her and what you won't. But most importantly, you have to believe that time is on your side.

- IF you are ready to place your mother, do so with a sigh of relief and the thought that you're doing the right thing for both of you. You are still a good daughter, a good mother and a good person. I'm willing to bet that you were also a very good wife, so kick those issues to the curb too.

Hang in there, friend. Keep us posted. As for me and mine, we'll keep you in prayers.