I've been taking care of my mother, with pretty advanced dementia, for 2 1/2 years now. My husband is supportive but at 68 he wants his life back. This has been a bad year. My beloved dog died only 2 months after being diagnosed with an aggressive cancer and my husband just received a diagnosis of lung cancer. I don't know what our future holds but I am going into this burned out. I am turning 65 next month and I don't understand why her life is worth more than mine. How does a person get through ?
Unfortunately, your situation has come to the point where you need to make a difficult choice, your mother or your husband. He is ill and has expressed his wish that he be allowed to fight this battle in peace. Dementia is an awful disease. There’s no reverse gear. He may simply just be tired of dealing with it. There is no shame or guilt in admitting its time to consider a facility for your mom. You’ve put in your time. Be there for your husband and help him win this battle.
There comes a time when you have to admit not necessarily defeat, but reality. I think you know you are there. Best to you. This is hard. Very hard.
Sending you both hugs and prayers.
If Mum is not in a care facility, now is the time. No ifs and or buts. If it were hit by a bus, she would be in care. If she is in a care facility, let the staff do their job.
Now your husband, he has a big challenge ahead of him and he will need you love and support. Is there any way the two of you can go for a short holiday before he starts treatment? Even a 2 night get away to reaffirm your commitment to each other?
You need to schedule cruxx time. You need to plan time each week, hopefully more than once a week, where you do something you enjoy. Hopefully you can reconnect with friends, as you will need their support as your hubby goes through treatment.
You and your hubby need to make a plan for housework, lawn/garden care, snow removal, seasonal chores, car maintenance, that he usually does. One so it is not an extra chore for you during his treatment, and 2 because you need to have a list of everything in case he does not make it. Not trying to scare you, but you best be prepared.
It is time to make sure your affairs are in order, update your Wills, POA etc.
Spend fun time together, even if it's day trips once per week or so or a candlelit dinner on your patio or deck if you have one. If you like the outdoors, spend time doing that. Whatever you two like to do together, plan often what you can or go off on the fly as you have time. You need to be there for your hubby and help him through these times while enjoying time together.
Tomorrow is never promised, no matter how old we are. A diagnosis magnifies the fact of how short life is. ((Hugs)) to you!
Cruxx, you really should place mom in a AL or somewhere, because the "what ifs" will and can drive you insane. Do it now while you have a chance.
You began by believing that your sweet mother would not live long if you placed her in a facility.
Since then, she's begun attending day care, and although tentative about it at first now seems to be relishing it - thinks of it as "going to work."
So - do you still think that the right kind of dementia care facility would be certain death?!
Have you looked at places near you?
Have you doodled a mind map, done a SWOT plan, given thought to how you might be able to plot a course through the years ahead?
Life is full of uncertainties. I can hardly believe I just typed that - OBVIOUSLY life is full of uncertainties! But among them, there are distinct priorities and known, predictable needs. That you are holding your family together is one, and that means you have to be okay - your life is arguably *more* important, because it underpins everyone else's. That your husband is facing a major challenge and needs your full support is another. And that your mother is a great deal more adaptable and accepting than you thought... well, QED.
And don't underestimate how big a hole your dog left in your life. How long ago did this happen?
I will just take this one day at a time and do the best I can for all three of us. On a lighter note, I have a beautiful puppy that has been promised to me and should be coming to us in 2 weeks. Not sure if the stress of a new puppy is coming at a good time but it has been the bright spot in my life for 6 weeks. Thank you for your concern and caring
Really, when you love people, relatives, spouses, whomever, there’s no “more important” or “less important”. I have found some degree of comfort and slightly less guilt by attempting to prioritize in the moment.
Typically, I never turn down requests to care for my three grandchildren, one of whom has a physical disability, so that’s relatively set.
My LO in a nearby lovely Memory Care unit has a stable schedule with lots of positive support, and literally no recall of recent events, so although it’s painful to me, whether I go every day or miss a day or two, she doesn’t really know.
I have revived a long gone passion for music, and am relishing every minute with my euphonium. I will soon be starting tuba lessons, and I’m as excited as a kid. Yes, I can vaguely remember how “kid excitement” used to feel!
I have come to believe that all loving daughters and sons expect dire consequences with residential care, but in our case, we have used the same facilities TWICE and both times have worked. I won’t lie, it’s not at all what I’d have wanted for LO, but we still enjoy laughs together and pleasant visits.
Breathe. Love and care for DH, love mom, examine your options, take the time to remember Sweet Doggie........just not all at the same minute.
Let us know how it’s going, and know you have sisters (and brothers!) in the WHAT NOW? Club. We’re all in this together.
Tell your family that you can no longer care for Mom. You are going to look for a Memory Care Facility where she will be safe and cared for. Pick a date for her move in to her new home.
If anyone else wants to step up great. Then tell them they will have to abide by the same date to get things arranged in their house and you will help pack up Mom's stuff. If they are not ready by your "move date" place Mom in Respite for the duration.
You have enough to worry about without having to go back and forth on a schedule of moving Mom.
If you can..can you and your Hubby get away for a long weekend after Mom moves out? Just to reconnect, get a breath before this next wave hits you?
(By the way..Is your Husband a Veteran? If so depending on where and when he served a Cancer diagnosis might be considered a "Service Connected Disability" and the VA can help you both a LOT. Might be worth checking into if this applies)
To cruxx, you said you take it one day at a time and do the best you can for everyone, thats about all we can do. I can't tell you what you should do right now for your mother. I don't know your mother and I dont know your financial position. Nursing home or Memory Care might be what you need if that is an option for you at this time. Your husband will need you as never before and I'm sure you need some help whether in home or not.
I've been caring for my husband over 5 years and my mother before that, both with Alzheimers. My mom had Medicaid and when she got really bad she went to a nursing home. I hated she had to be there but financially she could be. My sister and I did what we could for her and I'm still doing what I can for my husband. I've looked into nursing homes and tried to get Medicaid but for now that's not an option nor is private pay. It's very hard and I just pray something will open up that will provide before I'm unable to do it any longer. I'm like you and your husband. I want a life too! If you do have an option, it might be good for your mother and there's other options through the Area on Aging in your area, Social Services, Day Cares, etc. If your husband is a Veteran, maybe that is an option for you. Care giving and exploring your options are all a lot to deal with and I pray you will find the answer right for you and your family.
Candace A.Stewart has a great pamphlet called “welcome to planet Alzheimer’s”
Great info packed into a few pages.
Here's 10 rules while on planet Alzheimers.
1. Never argue
2. Logic and Reason do not exist
3. Lying is acceptable
4. You are not who you think you are, you are who they think you are
5. Never take anything personal
6. Old memories are best
7. Learning to do something new is not important
8. Being loved and accepted at all times is
9. Have NO expectations
10. Take advantage of the shuttle back to earth as often as possible.
The road to come is an absurd place.
Take care of yourselves. Do something you enjoy.
I also highly recommend finding a place for her. It will allow you to resume your daughter role to her, free up a lot of your time, give you some breathing space AND remove any stress from your home which will help your husband too. Use some of that free time to take short or long trips (if he likes to travel) to resume your own loving relationship and relax!
It sounds like you have a new pup coming to brighten your life a bit! S/he won't replace the one who passed, but can fill another spot in your heart! It goes without saying the loss of a beloved dog or cat (or any animal/person one loves) is devastating. It's worse when you don't have time to grieve. I lost a 15yo kitty last year. It was sudden onset, he wasn't responding to any treatment. To avoid him suffering I had to let him go. I was preparing myself for the eventual loss of my 20+yo kitty, who has been with me since May 1999! She's had a rough few years (Dx CKD years ago, slow progression, hyperthyroid, treated at age 18, and last April found lung spots, which we can't do surgery on or even biopsy due to location and age.) For him it was literally one night fine, the next I could see he had something wrong and within 2 days, gone. The loss of ANY hurts a lot, so we have to console ourselves, remember the fun good times, know that we gave them the best we could and that they were loved and happy!
"I have one family member telling me that I have seen Mom along this far and it would be a shame to place her now ..." Okay fine, did that family member offer to HELP in any way, in particular take over care of your mom??? Not likely. Do NOT let people like this guilt trip you. You gave your mom what you could, but to try to balance her needs with your husband's isn't realistic. The stress level on you will increase, your husband needs/wants a positive environment to allow him to work through his treatment and you won't be able to do all of that - dementia will only get worse and potentially hubby's needs will get worse during treatment - we are only human and can only manage so much. If BOTH need your immediate attention, who will get it? Ignore people like that and do what is best for ALL of you.
Falls - I hear concern in your post about falls. You indicate that "she falls about once a month in spite of anything I do to prevent it.", so this should NOT be a barrier to finding a care facility for her. They will fall no matter WHERE they live and you can't take on guilt for that! Our mother had recent falls, but they would've happened no matter where she lived or who was caring for her. This was one of the reasons I knew I could not care for her - bad lower spine, she outweighs me, etc. Please do check out multiple places and find a nice place for your mom. If she has assets to pay for it, even better. If not, Medicaid can help if she qualifies. It will be a good thing (ignore those who think otherwise - unless they are willing to provide help to you EVERY day, tell them it is NONYA, aka none of your business!)
One day at a time. 🌸
Do let us know how it is going and what you decide to do for your mother. We are not spring chickens ourselves anymore and your husband not only wants his life back, he deserves it. This is the age when we have hopes and dreams of retirement and doing all those things we planned for once working time was done! The stress of caring for someone who is not going to get better, but rather worse, will impact everyone in the household.
In order for his treatments to work best, it would be good to have a nice, calm, quiet household. Get enjoyment out of life now while you still can! It won't be that you are giving up on your mother, just giving up all the backbreaking work and reducing the chaos this can bring into your home. You can still spend time with her, help her, advocate for her and be her friend/daughter again!
Hoping all the best for you and whatever you decide to do. Hugs to new puppy when s/he arrives!