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!
You need to be open and honest with people that offer, okay when? Pull out your calendar and get them committed. Call them and say, I need you on this day for x time or schedule weekly, monthly set days for as many helpers as you can get. I offer to help people and feel like I don't want to push them, if they say okay and never call. I would be happy to have them call and say can you help me on this day or can you help for 4 hours every other Tuesdays. Don't be shy about letting others help you.
It is wonderful that you can take care of your grandchild, however, that should be a 2 way street. Tell your child that for you to continue to do what you do, he/she needs to give you a day or two monthly by taking care of your husband.
Babysitting is expensive and they make you bring the children to them, so asking for them to give you some of their time is completely appropriate. If they say no, require that they pay you enough to get someone in for a couple of hours a week or a day or two a month. If they don't pay you at all, call around and find out how much it costs and let them know that you may not be able to do this everyday but here are some resources for them to check out for the days you are unavailable. Maybe it will help them understand that you are in desperate need of some respite.
I pray that all that have offered respond to your request for help.
You can't keep taking on more things. You can't. I don't want you to be one of the statistics of a caregiver dying before the person cared for. I'm sure childcare's expensive, but that's the parents' issue, not yours with everything you have going on. You need help, consideration, and support too.
Do you think it's time to look into assisted living or long-term care facilities?
Best wishes and hug to you.
Sigh. If only it were that easy, huh?
I belonged to a caregiver support group. It was live-saving. There was no charge and no insurance approval involved. We met in space provided by a local assisted living (who also provided coffee, lemonade, and cookies for the meeting, bless their heart!) and the meeting was (still is) moderated by volunteers. I really can't believe there are no free caregiver support groups in Seattle. (There are several in the Twin Cities of MN.) Try contacting the ALZ web site. Or if your husband has some other kind of dementia, check their national organization website.
An online site like this one can be extremely supportive, too. It is not as good as a two-week vacation, but it sure is better than sitting alone and fretting.
The counselor I talked to was pretty worthless, too. She was chosen for me because she "dealt with women's issues." I discovered that caregiving was not a women's issue. She focused on issues I had dealt with between my first and second marriage, decades earlier. I really didn't need that kind of help. She had never been a fulltime caregiver for an adult and had some pretty unrealistic ideas. So don't feel bad about being a counseling drop-out. Sometimes that is the best reaction to counselling. I have also over the years found some counselling very helpful. I am not anti-counseling. But it isn't always a solution. You might be better off taking that hour appointment time eating an ice cream sundae and reading the newspaper in peace.
About being in this alone ... don't give up on that. There are people who say they would like to help? Call upon them! "Karen, I know you get up before the roosters! I wonder if you could keep my husband company some mornings while I am picking Lucy up?" "Mary Lou, could you come and stay with your brother and my granddaughter next Thursday afternoon? I want to try out a support group." Don't give up on the people who have offered to help without giving them at least two specific chances to do that! And if their answer is, "Oh, I'd love to do that, but I already have a commitment for that day," don't let a lot of time go by until you call on them for something else. You NEED help. You DESERVE help. People have OFFERED help. Somehow you need to put all of that together!
My husband took A LOT of meds that he could no longer manage with dementia. One daughter came over to parcel the meds out into the pills boxes, notice what needed renewal and ordered them. All I had to do was pick up the prescriptions and make sure he took them from the pill boxes. It took her a couple of hours every two weeks, and it was a huge load off my plate. Are there some things like that you could turn over to a helper? Not everyone is comfortable staying with someone who has dementia, but many people would be willing to change your bed linen weekly. If you are going to spend time "brainstorming" an issue, I nominate how to get help as the issue! Do you have a friend who LOVES cooking and would be delighted if you asked her to make a casserole for you next Tuesday because you won't have time to cook? Get creative. Most people are sincere when they say they want to help. They often need suggestions for how to do that.
This is a time when you clearly should be getting help from people who love you. It sounds like, instead, your are helping out an adult family member yourself. I do not know the circumstances behind babysitting for soon-to-be two grandchildren. Why does it have to be you? Leaving the house at 4:30 is insane! Leaving your husband alone when he obviously needs some supervision is unsafe. Something has to give here! I don't know the circumstances so don't have many suggestions, but that might be something specific to go to a counselor about. Have him or her help you brainstorm that one!
I know your granddaughter is precious to you, but your daughter needs to find a sitter at least part time. Yes, it’s expensive, but that’s not your problem. It comes with the territory of having kids. As Grandma, you get the cream off the top. You say when you can and can’t, not your daughter. The road goes 2 ways and Daughter can drop granddaughter off at your house too. Sure, maybe it’s an inconvenience for Daughter, but she’s getting babysitting by an expert. And you definitely shouldn’t take on the responsibilities of a newborn AND a preschooler in addition to your husband.
I'm tired just READING about your life!!!
I'm afraid it's time to have a sit down talk with daughter and son-in-law about your home situation with your husband (her dad). If you come home to chaos when you've left hubby to p/u granddaughter, then he can no longer be left alone. What if he starts a fire or falls down? It is akin to leaving your 3 year old granddaughter alone. Also, you should NOT be leaving at 4:30 am under ANY circumstances. That IS asking too much. Why can't THEY drive her to you?
I know you love them all, but they either don't see how your home situation has "evolved" (how can they NOT see Dad is in the throws of dementia) or (hate to say), don't care, as long as their child is taken care of. It would be absolute MADNESS to add a newborn to this mix. DON'T do it. I'm sorry, but they were responsible to make the babies, they've got to be responsible to provide the daycare for the babies when good ol' mom can't do it anymore.
I had a hard time allowing others to help me previously but when my body no longer functioned like it used to, it's time to allow others to help you. Don't be afraid to say you CAN'T. A husband with dementia, a 3 year old and a newborn would wear down a 20 year old!! You must start setting boundaries. It's OK to do that. You've got to be able to say, "Enough is enough." I suggest that your daughter and son-in-law provide care for your husband WITH their children for the 8-10 hours a day that you do it. They will quickly see that this is an impossible situation and hopefully will find daycare for your granddaughters.
Contact your local senior center for all kinds of referrals and suggestions. They are a great source of information for just these situations.
Dear Lady, please only take on one caregiver task at this point in your life. As you can see, very few jump up to assist you, so you must set the limits of your endurance.
When my daughter asked if I would watch my infant grandson I had her pay me. It was $100 a week that I put aside in a bank account. In Feb we used the money to take Gson, now 5, to Universal Fla for his birthday. It was a nice family trip.
My Mom said the same thing that Amijoy said about caring for her grandchildren, babysitting my daughter kept her sane. But like Amijoy my Dad didn't have Dementia. His was depression and once they found the cause he enjoyed my daughter. I was also a single mother working at a low paying job. Dementia is so unpredictable.
If you want to watch your grandchildren, you may need ur child to do more. As your husbands Dementia progresses he may start wandering in the middle if the night so no sleep for you. May be a good idea to have them bring Gchild to you. Like I said, looks like your husband cannot be left alone. If this is not possible, they may have to find another babysitter. They need to be made aware what Dementia is and how the stages will effect you.
What are these 'groups' that you are looking for? ( I live in Bristol, UK, life is different here!) We have a very few daycare facilities run by the Alzheimers Society, I think theres only three in the Southwest of England. there are others run by other care groups, but they maybe couldnt cope with the extra stuff with someone with dementia - wandering, help with toileting, food, non-communication; to name a few.
My husband has been going to 'The Limes' for about three years now, and he relates well to the experiences he has there - it is run by the Alzheimers Society so they are clued up and trained for most things they encounter. And it gives me the chance to 'be me' and do what I want - which is usually to 'veg out' at home these days, and resist the (vague) urge to clean the house!
We dont have anyone from Ruperts family nearby, and they do not have a realistic idea about what life with him is like - probably much the same as most of us on this forum. I think they would take fright and pop him into a care home if I turned my toes up!
Here in the UK we have to pay for care - the good old NHS has been progressively undermined by the Tory politicians since Margaret Thatcher and we are lucky that any of it is left! I pay £100 per day for my husbands time at The Limes.
Here in the UK there are groups which meet up to chat about their problems, and hopefully make friends and "?cheer each other up?" which we have tried and I simply find boring and somewhat upsetting, because when you are first on 'the alzheimers scene' after diagnosis this is the sort of group you are directed to. I really hope it is helpful for somebody, but it was a waste of time for us!
My suggestion is that you establish what YOU want to do for yourself, weekly or whatever, (go to the library, the movies, for a coffee with friends, swimming or the gym, or just 'me time' as I do) and get it sorted by getting help from somewhere - either family (twist their arms!) or bite the bullet and pay for it if there is no alternative.
The benefit is multiple - when you pick up your husband he will be pleased to see you, and you will be very pleased to see him! My husband is non-verbal, but he certainly shows that he is pleased to see me and that he has had a good time. And you have had a few hours to CHOOSE what to do!
It looks as if you just need to forget about family help, as it seems that most of us on this forum have. Dont worry - you can cope for a while longer!
Kind regards, and best wishes for the future
Emmdee
Do you know what the long term care is like over in the UK?
I understand that you have a 2 systems, one being private care which can cost up to £1000.00 per week and the other being the National Health or Council care. I'm sure many people can't afford £1000.00 weekly and need to rely on the National Health......what is this care like?
If you could shed light on this for me I would really appreciate it.
I tend to write a poem when the moment takes me.
I'm sorry that you're going through this with your husband and your invisible family; I do not have the answers, but thought you might like to read this.
Lonely Child
Feeling like an only child
Looking after mum all day
Sisters living far away
But they never enquire after me
Mum is quiet, mum is loud
All these things and more
Praying for an easy day
But it's not always allowed
Making meals, making beds
Washing clothes and washing up
Trying to make a life for me
It's not easy, but I keep it up
Going out, cups of tea
Watching the waves roll by
Talking round in circles
Not making sense - not right now
Feeling like an only child
Is there anyone to talk to
Feeling like a lonely one
Wondering where it's heading to.
Hilary Milner ©
15.10.18
I know. My two brothers are 100% useless and I do all the care for my full care 89-year-old mother and been doing this for years. I even have to bathe and change her diapers, and manage her bowels. Oh and as for counseling..waste of money. Unless the counselor is willing to come to your home hours at a time and you know that won't happen. Hiring help is about $30-35 an hour (who does hands-on care like bathing) ..sitting services alone--and they just sit--is about $20 an hour. So..yes..you are alone. Medicare and Medicaid won't help. Medicaid only helps with nursing home placement. and good luck getting them on it--it's a nightmare quagmire of paperwork and legality you need an eldercare attorney ( a good one at that).
Even if you get them on hospice they are not much help either. YOU can get someone out a few times a week to help with bathing but they are only there like an hour or less and leave. And it's stress alone waiting for people to come over. So I rather just do it alone--it's easier for me.
it's very back breaking soul-destroying process.
ive been caring for my mom, who has severe dementia, over 7.5 years. It’s a very difficult assignment.
I found awesome support online from a Facebook group called Purple Sherpa. It’s a closed group to vent, find out solutions to caregiving problems.
1) Has your hubby been to a doctor and diagnosed? Been to a neurologist? Is he currently on anything to slow down memory loss or keep his agitation level? If he has dementia he should not be left alone. At a certain point I felt the General practioner doc was guessing with mom’s meds; I found a psychiatrist (or neurologist will do) that balances her meds and kept her active but not too angry so I could handle her.
2) You are on the right track thinking of your energy level and wellness. There is a creative solution I found at our local senior center (Council on Aging). It’s an affordable daycare. It’s been such a blessing! She goes; is occupied and I can clean, run errands and keep my sanity.
3) Grandkids are a blessing but this daily free babysitting needs to be addressed. It won’t be easy. Occasional babysitting is one thing. You already have your hands full and guessed the next phase; isolation. Family can’t be counted on for any help with dementia. The kids need to find weekday babysitters.
4) Spend energy finding any respite resource available. Find out costs and availability. I found a yearly grant to help with mom’s daycare. ‘A place for mom’ is a free resource. Call them and ask about respite care in your area. Get your ducks in a row cuz you will need to conserve your energy. Bless you.
As a 24/7 caregiver for my own DH, I know of what I speak. I couldn't leave him for 30 minutes anymore. And, I regained 50 lbs of the 90 I had lost a few years back. Goes with the territory. It also SCREAMS of STRESS!
I can understand you watching your grandbaby - but tell your child that in return, he/she is going to have to "daddy-sit" in exchange. That should be an eyeopener to your child and grant you a time reprieve. You need to have a free sitter too - so why not exchange the time of sitting with this child who has no problem expecting you to babysit?
I thought I have it bad. Wife is continuing to go down and has become resistant to everything I try to do for her. She is eating less and sleeping more. When she wants to do something it becomes a fight to get her to stop. Things like dumping her meds into her drink or putting her foods into the drink. Constantly removing her protective underwear. Urinating on the floor. Not allowing me to apply skin meds. ETC.
We have no friends or relatives to spell me. I have to hire companions if I need a break or need to go to a store for anything. I can't take her with me because of her incontinence and her combative nature.
My list goes on and on.
You are doing a job that few people on this planet would opt for. I haven't joined a support group due the expense of hiring a sitter and scheduling.
I haven't even found an on line chat group that sounded like it would help me.Maybe you can but whatever you do, I would suggest you do it soon. If you don't find any help, please come back here often and we will be more than happy to talk with you and provide whatever help we can.
Do you think that any form of exercising would help you? Nothing intense just something simple like doing some pushes like trying to push the wall out of the way or stretching a little and trying to reach that light bulb in the ceiling light. Maybe wring out a wet wash cloth until it is dry (won't happen but could provide some stress relief).
You have enough to do with your husband and the parents of the grand kids need to lighten your load and find another sitter for the grand kids if they are not willing to spell you for a few hours a week.
As to your husband, honey everybody isn't meant to be a caregiver. Both jobs are full time, watching hubby and a toddler. Your adult child is taking advantage of you and thinks you are that same super woman from youth.
You are not grown child's financial savior. Toddlers are demanding. Fix that and have the energy for hubby. Maybe financially you cannot place hubby in a facility as his income would go with him. I totally understand that dilemma. Many people don't get that part.
Best of luck to you and get some rest
You probably did this already but try your local senior center, they may have an adult day care program. It is usually very affordable like 40 dollars a day , with lunch and snacks . May even be covered by insurance.
Also remember it is okay to say NO to babysitting your grandchild. If that makes you uncomfortable, pare it back . They will find other resources , believe me. Also
please call the office of the aging in your area , they will have a “caregiver respite “mprogram that gives you a volunteer for a few hours so you can get away or even lock your self away and nap.
Prayers coming your way . Good luck .
There is no 'Senior Centre' even - nowhere to go for advice, let alone help. We are each of us alone in our little worlds - unless we go to a 'group' to share our experiences, which is a rather self defeating exercise, because its simply a chatroom for carers, and everyone has a woeful tale to tell. No thanks!!!!
to poor tired5 - I hope you manage to re-establish some sensible boundaries, so you can enjoy your grandchildren without getting up at 4.30 am! You do not need to be the person who does the early daycare, especially where it puts their grandfather at risk while you do the transport and leave him at home alone! It must be really tiring, and will only get more so, to the detriment of your own health - i agree with all the advice you are given here!!!!!!!
Priorities, my dear.....
With love - Emmdee
had a purple top do it it does work ..also you can take 1 or 2 your self in the evening i have taken 3 last night i did it is safe & natural ..if you have not seen or him see a psychiatrist need to go asap ..they will give you good stuff to help out
as soon as you can go to bed take 2 melatonin get that sleep ...even if he is on pills the doc gives him if so give him the melatonin ..good luck
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.
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.
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.
"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
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.