I am new to forum. I am in my third year of caring for my husband with dementia and also caring for my 3-year-old grandaughter with a new grandaughter on the way. My husband is still active most days, but I am seeing rapid changes. I asked my doctor for referrals to groups but there are none that my insurance covers--believe it or not in the Seattle area. Others I found are during the day when I have my grandaughter. I rise at 4:30, pick up my grandaughter, and return home to everything moved in the kitchen, my items thrown away, repeated questions, etc. etc. My doc suggested counseling. The counselor suggested I write down issues I need to deal with, write down ways to brainstorm solutions, and choose the best one. I do not have time to do that. It's easier to just solve problems as rapidly as possible, and move on. Needless to say I am a counseling drop-out. Through many tears, I have come to the conclusion that I am in this by myself. Family says they understand, will come to give me a break, will visit, will call and on and on, but it never happens. Friends have drifted away. Everything I read says take time for yourself. When??? I have all legal paperwork in place but most likely will not be able to afford outside care if/when it comes to that. I have gained 30 lbs. and I am tired. I need a pep talk and a nap!
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 .
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 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.
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.
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.
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.
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.
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!!
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.......
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.
IMHO, at this point, unfortunately, the OP needs to choose WHO she wants to caregive. Hubby could go into a memory care facility or the granddaughter and new baby can go into daycare. She will burn out very quickly if she continues to try to take care of all of them. I'm sure she loves them all. It just is not humanly possible to do alone without suffering health risks.
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.
And for the friends who said they'd help....maybe ask them for something VERY SPECIFIC. Can you come on Monday, for an hour, so I can rest? Maybe they want to help, but aren't exactly sure what you need? Is that possible?
What kind of insurance? Look at your insurance carrier's website - your doctor might be wrong about what's available. Most carriers allow you to search for specific types of providers, that accept your insurance, in a specific area. Is your husband eligible for Medicare because of his illness? Does he meet the criteria for either age or "disability"? Maybe that might open more options? Check out the CMS website: https://www.cms.gov/
Also, try looking at local churches/religious organizations. For example, the Methodist church in my town has both a daycare center, with full or part day child care (very reasonable rates), and a once a week group for people with Alzheimer/dementia. Maybe if you can't get a break from caring for hubby, your family could swing at least a partial day, a couple days a week, of daycare for the grand?
I know when you're already tired and stretched thin, adding more tasks like research is a daunting, but you can do a lot of the preliminary stuff on-line at your own pace.
Don't beat yourself up for any weight gain - this is VERY common for people in stressful situations like yours. If helpful, there are a ton of free workouts - some as short as 15 minutes - on YouTube. Yoga, HITT, Zumba, all sorts of things. I know you're tired, but sometimes, although it sounds counter intuitive, physical activity can help give you a shot of energy.
You're doing a lot, be proud of all you're accomplishing. You are amazing! Your family is lucky to have you and your support.
"Oh we can't come..." "Oh we are busy."
My husband and his mother are both dx'd with dementia. Hubby's is mild but he has many other health issues at his young age. MIL is now under guardianship but I am called to go take care of things for her. Hubby gets emotional and upset when I leave for his mom's [3 miles away] because I end up spending an hour helping with something she needs done.
MIL's friends seemed to have disappeared as if dementia is catching.
SIL moved away and said she can't deal with it.
Stepdaughter says ... I am too busy, but YOU are doing a great job!
I can still grab an hour here and there to get groceries for my house. So I am going to join a gym too to go during hubby's nap times. I need to see non dementia people and interact with them or I will go into the looney bin.
While at the ER yesterday I get a call from MIL's helping hands asking me to take her to an appointment. I simply reply that I am only one person, call for transport.
My second item is that I sent out an email to friends, stepdaughter, and neighbors saying that I am going on a respite trip this winter and I need help for Hubby.
All friends and neighbors responded with a positive reaction. They will coordinate meals, help with chores [I'm on a farm], and someone to even stay during the day. [Hubby doesn't need watching at night now].
This will be the first get away in 2 yrs. I reached out to the county and they said my husband is a veteran so I can get help from the VA. The VA says he is not able to be on his own, but not bad enough for assistance.
Go figure.
It feels very lonely out here.
"The VA says he is not able to be on his own, but not bad enough for assistance."
He doesn't need our help, but it's absolutely essential that you do not leave him unattended.
You wonder how they can keep a straight face, don't you? SMH
I understand what you are going through with your husband. It's hard very hard. It's like I saw myself in you.
Last year after two years of taking care of mom she passed away. Dad had dementia for years but he kept it hidden from family and friends for a long time. I decided to stay at the house and help dad. Ufdah he decreased steadily same things questions, he threw important documents. Family said oh if you need a break call. Yeah right. Dad had to much money to qualify for anything. He fell and I got him a Walker and a commode. I got him adult diapers. He wouldnt want to go anywhere. The tears and the weight gain yep. I am also going through a divorce and have a 10 year old daughter and a 8 month old puppy who bit dad so now I'm getting rid of the puppy. Plus I work full time. I know how you feel. My aunt came by and criticized the house and I told her to take a flying leap. But one thing I've learned is I'm not alone. You just proved that. So if you ever need to talk I am here.
I agree with other posters that your adult child expecting you to look after his/her kid is unfair. Childcare is expensive indeed, but so is stressing out mom. If you are sick, it will be even more expensive for your adult child to care for you, daddy, and the toddler. Pls reconsider your kindness to your adult child.
I also sympathize with you about friends and family members making empty promises. My husband had a large group of friends during his healthy years, but now only 2 would call me to find out how things are and offer help. The rest would show up immediately if there is food and then leave never to call back. Similar with his siblings and nieces and nephews. Terrible folks.
My husband’s children from his previous marriage are 3k miles away, so i understand the hardship for them to get here often.
Anyway, you are not alone, my friend. Many of us are in the same boat. Pls call the Alz number and let us know here how things progress with you.
1. If you continue to care for your Granddaughter have her Mom find a way to bring her to you rather than you going to get her. Sounds like your husband can not be left alone for any length of time.
2. If you are not charging to care for your Granddaughter start NOW. And do not give your daughter the "friends and family discount". She needs to pay you what she would pay someone else.
You also need to have a discussion that you may not be able to care for her much longer, your husband is going to require more and more of your time and attention. So have your daughter start looking for other day care options.
3. You are NOT alone. There are many on this site that have gone through what you are going through, they are going through what you are.
Alzheimer's Association has a 24 hour call line you can use. Call and ask if there are support groups in your area and when they meet.
Now is the time to bring your daughter into play...you watch her child she can come and watch your husband while you are at a meeting. And she can come at least 1 day a week and give you a break so you can get out and get some things done for yourself.
Is your husband a Veteran? If so he/you may qualify for some assistance through the VA they have people that will come out and stay with your husband while you get out. Unfortunately the time is limited. If he is a veteran and if he has what might be a "service connected disability" he/you may qualify for more help. Check to see if there is a Veterans Commission Office in your area. They will do the research for free there is no need to pay someone. All you need is your husbands name, date of birth, if you have discharge papers that would be great, social security number, any info will help.
You also need to start thinking about what you are going to do if this become too much for you or if it becomes unsafe. By unsafe I mean for either of you. You can not help him or yourself if you hurt yourself trying to care for him. And you do not want him to hurt himself wandering, turning on hot water, or trying to cook a meal.