Going it alone?

Boy you just described ME!!!! I have been caring for my wife for the past 3 years and it just doesn't get any easier. Just remember, your not alone with you situation.
I am now going thru the "I want to go home" , which is not an easy thing to cope with. My kids don't help, in fact when they found out their mother had alzheimers, they completely abandoned me. If it wasn't for the good Lord, I don't know how I would continue on. Hang in there, as I am doing and remember, there are a lot of us in the situation that you are in.

Question: You say your are caring for a 3 year old and another on the way. Where is the parent of those children? You should NOT be responsible for them. The parent or parents of those children should provide and pay for child care for their children and should not rely on you. You have more than enough handling your own problems with your husband.

Asking where this child's parents are, and will be when Grandbaby 2 comes along, is a natural question; and I too am wondering why it has to impose such a tough schedule on the OP, and whether the OP's son/daughter appreciates how difficult it is to balance these two types of caregiving - maybe not, maybe hasn't a clue.

But I don't think we can assume that the OP doesn't adore looking after her granddaughter and isn't happy to support her child in this way. It might be the last thing she wants to give up.

Contact Aging Services in your city or county. They will let you know what help is available to you. Find out if VITAS is available in your area, they are wonderful. I know you love your grand daughter but perhaps that responsibility needs to be re-evaluated. Maybe only have her 2 days a week and her Mom will have to figure out other part time help. You are overloaded and it's not fair to you. Reach out to the people who promise to help and ask for a date andtime whenthey can come. Let them know how bably you need help. Don't be shy about it. Good Luck!

Uh oh, your doctor sounds like he/she knows something and you might not want to admit it. No one can take care of a preschooler and someone with dementia. It’s cool that you want to do both, but perhaps it’s not the best choice? Why are you sitting for the child? Perhaps there are other options for the parent? If your children need you to sit, but cannot help you when you need it then? Doc is on the right track here, you might want to start brainstorming solutions. You are just one person. Give yourself a break. Prayers for you.

When you babysit grandchildren, have your children babysit their Dad. Leave the house & take grandkids somewhere fun

Can you find a day program for your husband for a few days a week?  There are some really good ones out there.  Find one with a lot of different activities and make sure there are people there at the same level he is at.  Sometimes saying they're going to "help or volunteer" makes it easier for them to attend.   I know the love a watching a grandchild but sometimes we have to say No and look out for ourselves.  I'm sure you're thinking hard about what to do and it's not easy.  I wish you all the best.

my heart goes out to you as I was in the same boat as you. I had both my mom and dad to care for 24/7 for years. you can not continue to do this by your self. you are going to make yourself
sick and maybe even have a nervous breakdown. don't allow this to happen.
you say that you are watching your daughters toddler and she is having another one in the near future. I would gather that you pick her up at 5;30 am because your daughter must go to work. is the husband in the picture at all?
my suggestion is to sit your daughter down and tell her you cant continue to do this without help. I would explain that if she needs you to sit so she could work, than she needs to chip in and watch dad for you on her day off. I am sure she is not working seven days a week. I would tell her that if an agreement can not be made between you both, than you will be unable to continue to watch her child and she would have to find a sitter or daycare for both kids.
I wouldn't give in to her if she chooses not to watch dad. she needs to step up to the plate as you are for watching her daughter.
good luck .
I don't know about where you live but here NYS we have adult day cares that pick them up and drop them off. even if you did that a day or two a week that will be very helpful to your well being.
I hope all works out for you, I really do.......

I've read only a dozen responses so far, but since I'm caring for my 1yo grand niece 2-3x/wk (dropped off here for the past 9mo now), along with my 90yo dad (no dementia and still mobile and adores his ggd), may I assume that your daughter assumes that all is going well with your taking care of both her child and your husband b/c you haven't vocalized the too-great load you feel caring for both? And leaving the house at 4:30am to go pick her up? Yikes and double yikes! Time to get lovingly assertive with daughter ASAP and make some changes ASAP. You're not running a daycare. Your husband is not a toddler. He's a grown man who requires unique and physically and emotionally demanding care by and from you. My niece knows that this arrangement can't go on much longer b/c I have made it a point to have heart-to-heart discussions with her, so she is actively looking for another caregivEr. My dad and I have enjoyed watching my grandniece go through all the stages of her first year of life, but tougher times for my dad are probably coming up sooner than I'm emotionally ready for, so I need to clear my caregiver plate for what's inevitably ahead. You do, too.

One thing is certain~you need respite, else you fall faint and ill. Where are the parents to the grandchild/ern?

Tell your child that you cannot care for your granddaughter every day any longer due to their fathers' (your husband) circumstances. And do not let it get started caring for the new granddaughter. Having grandchildren is suppose to be a pleasure not a burden. If you cannot separate from being the caretaker of your granddaughter, have her parents BRING her to you so as you're not leaving your spouse alone to burn down the house or whatever. People (family especially) will only take advantage of you IF you let them. It is never too late to start a "new normal". And also, TELL your child that from now on, there will be some reciprocation where one day a week, they TAKE their Dad to their home for the day or come stay with him in your home while you take a break!! And I know first hand that all these people who say "take time for yourself" have never been burdened with a 24/7 365 responsibility. If you don't do something to make things better and then you crash and burn...then what?

Tired5,

First of all, a sincere hug sent your way!!

Second of all, sometimes relatively minor changes can ease the load considerably. For example, I’m sure there’s a need and also a natural want to take care of your grandchild, plus I don’t want to add another emotional burden suggesting you tell your daughter that you cannot take care of your grand baby anymore.
Yet, what you can do is to have an honest conversation with her and explain that it could be of great help if instead of you having to go pick the baby up, she brought the baby to you.

She doesn’t have a vehicle? Uber, bus, another means of transportation would be much cheaper than having to pay for a nanny or any other childcare options.

As life changes, we need to change too. A huge mistake we all have made at some point is to expect that everything continues the same when everything has changed. To continue doing the same when our circumstances have been turned upside down. That attitude adds another whole set of complications.

I believe that although you say you’ve no time for anything, you NEED to make time and create a moment when you are calmed to seat down and examine the situation to assess what in your new circumstances can or have to change, like that idea of having your daughter drop her child up. That is more sacrifice on her part but it is the time when everybody should sacrifice something.

Only you, who knows well your situation can tell in what areas there could be an opportunity for improvement, and as you analyze it please keep in mind that your husband’s situation will likely become more challenging. This is not to scare you, it is just a suggestion so that when implementing changes you are thinking about the future.

Another simple change could be to make your house child-proof...Not only for your grandchildren but for your husband. You said you usually come back from picking the baby up and find things out of place etc, well make everything safe so your husband, first,doesn’t have the risk to hurt himself but also so he cannot open certain cabinets doors, fridge, etc.

Also, like someone mentioned, asking your daughter (do you have other kids?) to come help on the weekend is a good idea. Remember -and remind her- this is a time when everyone needs to sacrifice a little so that the situation is manageable for all. She could stay with him while you go to the supermarket AND get a coffee, go watch a movie, etc. Yes, you can, you should!

Get some structure going, including your husband and your grandchild. For example with some patience and consistency you could get your husband and grandchild to take a nap at the same el time! that is time where you can breathe! (Priceless!)
You could also try cooking only twice a week, meal prep!; that’s one thing less to worry about daily and it ensures you eat well and healthy..no junk food.

Another idea could be to take your grandchild out everyday in her stroller for at least half hour, and while pushing the stroller you walk fast (exercising!) or go jogging! It’ll be great for her and great for you to start working on your weight and also cleansing your mind.

These are just a few suggestions, but like I said only YOU can tell exactly what is feasible and what is not...just bare in mind that keeping the same behavior is the only thing that is not feasible, because either you change things around to adapt to the reality of your life, or life will force certain changes as life keeps evolving.

Hope you took a nap and please keep your spirits up! We are stronger than we think we are, really; and we all have the capacity to adapt to changes in life if we do it intelligently!!

May God bless you!!

Worriedspouse,
So far she does not have bowel incontinence. It is simply that she has lost so much muscle in her butt that the cheeks do not spread to allow the feces to fall into the toilet bowl. She does not normally wipe either. So she pulls he protective underwear up ensuring that the feces is trapped but it will fall out sometime.
As to how I handle it, I am not sure. When I find it I just take any and all corrective action. I should add that her bowel movements are, so far, solid and I can pick it up and deposit it where it needs to be. Then I a proceed to wash her where the sun does not shine. I ensure she washes her hands and I wash mine.
Then I scout the floor for any missed pieces. When it is all taken care of I just feel like crying. Sometimes I manage to get a tear or two out.
Oh and we currently have a visiting nurse that has witnessed this first hand.

OKAY now for your laugh for the day. A few days ago I had finished cleaning her and was in the process of applying the wound cream, with my face down there when she broke wind. Yep, right in my face. So, I came up for air and went on to finish the job.
Will any of you experience this? I hope so, I don't want to be alone in that club.

Hello My Friend. You sure have a lot on your plate as the cliche goes. So do I. I not only take care of my husband, but my 90 year old mother and mentally ill brother. And my fibromyalgia is at its worst so I feel like death warmed over every day. We also don't have family eager to help out. In fact, they don't call or come at all. And it does feel like we are alone in this journey on the isolated moon surface. But I have found that I can hire some good help. It took me a long time to find good people, but I finally did. I now have some help during the day, but I'm still alone at night. THank goodness for the firefighters when my husband falls!!!! I think that God meant for all of us to help those who can't help themselves, but I also know that it doesn't work His way. Given that, keep looking to Him for your strength and comfort. I don't get too much respite time, so I learn to enjoy a 5 minute break somewhere, sometime. I made sure all our finances were taken care of because I dont' have the time to fuss with that either, I searched till I found a gardener to help me with the yard and doesn't charge me landscaping prices. I look for little areas where I need the most help and try to get others to fill in those areas. Of course, it comes at a cost. I can't get this help any other way. So I made a decision early in the disease to get rid of all unnecessary bills and keep costs down to a minimum so that use my left over money to hire people. After a few years, I now have good help and we are doing better. Keep up your faith and keep looking for God's graces. They do come. Enjoy your little granddaughter as much as possible and treasure your time with your husband. Mine is so advanced that he is there physically, but not much else. I miss him so, but I still shower him with love til the end of his days, God keep you in his Love

I live in Seattle area. There is an adult day care called Easter Seals w free pick up & delivery plus scholarships depending on income. Another called Old Friends on East side also w schlolarships. Call Alzheimer's help line w live people will listen & help. Have daughter be w dad while you go to evening support group. If your looking for something you can't find call 211. Heard they can help. I would suggest you sit down & write a letter to your children & express your feeling overload & suggest what specific where they could help. You know 80 percent of caregivers either get very sick or die before the person they care for. I know of 2 cases. One vivacious caregiver had heart attack & 3 wks later died of another. Another stubborn caregiver had stroke. So what good will you be if this happens. You must take care of self. Call Alzheimers number help line first. 800 272 3900

Before speaking face-to-face with family members, direct all of them to this website with instructions to read all five pages of responses. Maybe they will see a different perspective and you might get better results. Good luck. I will pray for you.

I know how you feel. I've been doing it about the same time. I cannot even get my husband a doctor as here on the big island of Hawaii no doctor will prescribe unless he is taken in person go register at the clinic. He refuses to leave the property and it isn't considered an enercecy so ambulance could be $3000 and would be trainatic because it would need police and restraints.
I can't get help from Medicaid as they require our house as collateral and it's all I have. They don't take it as long as you live in it but I will need to sell as son as I stop work( I pay under the table for a companion so I can go to work a Thursday of my on call 9 month job) then they only let you keep be$100,000. Not enough for the rest of my life my SS is low. Step son and wife gave me 25 days last June first days off in 2 years and can't guarantee they will come again they live in another country. Friends wish you well but don't come to visit so yes I'm on my own too between a rock and a hard place. I feel for us both. I pray a lot for solutions as he is much worse.

Call 211 and see if your state has any programs to assist caregivers for the elderly. Also, your adult daughter may qualify for WIC, and your 3 year old granddaughter may qualify for WIC and perhaps subsidized preschool. This may help your daughter become more independent and have to rely less on you.

It's impossible for you to do this long-term on your own. Calling 211 and/or looking at your state's department of health website and contacting your state's human services office may be best for all 5 of you.

You are stating your problems right here online. Read what you wrote. I feel certain that there are groups around.The computer is the way to find the groups. Look for further resources through Agingcare.com. Look up the dementia sites and you will be able to "follow the trail" to get the support you need. There are social workers/psychologists that monitor groups on the telephone.

Caring for your granddaughter is the first activity to give up! Listen to yourself or read what you wrote. Getting up at 4:00AM to go to your daughters to pick up your grandchild is ludicrous. Your daughter gave birth to a child and it is her responsibility to take care of her baby. Options: daughter helps with the cost of care for the child/husband, take the child to day care, bring in a student from nursing schools ( people from the occupations in nurturing.)

It is awful to feel you are alone. I understand it and feel it everyday. Think one day at a time. The future can be overwhelming. The computer is your friend.

I am so sorry for your situation. It is tough.
I can only tell you that all my strength, courage and help comes from the Lord. Friends and Family are always going to let you down. But, God never fails us.

It is only by His grace that I get through each day and that I have been able to endure through this four years now. I have shed many tears, wanted to run away from it, and just felt utter depression and misery. But, the Lord brought me through it all and strengthened me.

I know most people do not want to hear that, but it is truth.
I will be praying for you, and you are not alone, it just feels that way sometimes.

OMG, not the kitchen!
Lol, we post stop signs up on certain rooms someone is not allowed in. Keep reminders that they are not allowed in those rooms at all. Seems to be working for now.
I mean, buying plastic stop signs and posting them up everywhere!
Ours is not allowed in the kitchen for anything, and he complains about it repeatedly. He does follow the rules!

I just have to reply to old sailor
I too, have been in the situation as you have, but my mom went a step further, she not only passed a long stinky fart in my face as I was down below cleaning her, but she splattered very loose number two and yes, it was right in my face. And I have to say that it was the first time in a long time that I saw my mother laugh her head off as I dripped my way to the bathroom.
It is difficult to take care of one sick person never mind watching a child at the same time. It is totally unfair of your daughter to expect you to go and pick her up that early. I would tell my daughter that if she wanted me to watch the child she would have to drop her off to you. I would also tell her that when the new one is born she must find other day care for both.
you need to put yourself and limitations first. Your daughter and husband should know the strain and stress on you as it is and should be helping you not added to your responsibilities .