Going it alone?

Tired5, you are doing great! You are an amazing woman! Wow -- you deserve a crown and a cape. Now go take a nap.

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!

Tired, getting up at 4:30 am in order to babysit is unsustainable. This is ridiculous. Your husband is getting to (or at) the point he cannot be left safely by himself. To start, your daughter needs to drop off her child. This however just shackles you to the house more. If you’re seeing “rapid changes”, you need to plan now for them, or you’ll be dealing with 2 babies, an unmanageable husband, and no support. . What would she do if you didn’t live close? Your daughter is taking advantage of you, your health is suffering, and the light at the end of the tunnel is a train. You need to step back and save yourself.

Does your township have an Elder Service department? Check out your town's website - if there is one, it might be listed with the other departments like water, public services etc. They might be able to help with resources you may not have considered.

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.

Have you checked for adult daycare in your area, free or minimal cost, some even come pick your loved one up.

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.

If you’re like me, caring for your granddaughter keeps you sane. My grandsons (3 of them!) are the only reason I get out of bed in the morning. I am a full-time caregiver for my bedridden husband. He does not have dementia, but he is demanding. I have 2 children. My daughter’s sons are both special needs. I cared for them when they were infants until they went to school full-time. I know I could not do it now. My daughter -in-law’s parents babysit for their son who is 6 months old. My son moved yesterday from a home 15 minutes away from us to a home 40 minutes away. Obviously, he won’t be available at a moment’s notice any longer if I need help. So, yeah, pretty much all of us have no one to rely on but ourselves.

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.

Dear Tired,
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.

Dementia. With that diagnosis all relatives seemed to vanish into the wood work for my MIL.
"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.

Isthisrealyreal's advice was spot-on. I'd go one step further and have your child find a replacement sitter for your grandchild. I'm guessing you'll take care of the second grandchild?

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.

Dear Tired5
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.

I agree with all who answered that you need to have a conversation with you daughter and son in-law about your huband’s current status. Take a deep breath.
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.