I'm helping to care for my 89 year old mother-in-law ( in my home ) who has Alzheimer's. To prolong her quality of life and finances, we thought it best to move her in here. Sadly, the other siblings are not supportive.
It's been one year. Since moving in, her physical health has improved dramatically, but of course, mentally she continues to decline. Her doctor said she could live for another 10 years. She is still very mobile. We have her in an Alzheimer's activity group (saving grace) She loves to eat more than anything else. But she is also very bull headed—a trait that wasn't there when she was sane. The constant repeating questions would be more tolerable if she was somewhat like the nice lady that once was—but she's gone.
I know it's only going to get worse. Is there any hope, or is it really just one long slog to hell? Honesty appreciated.
I'm sorry I don't have better news. My mom, who one year ago was able to call me on the phone, visit me, and walk up and down stairs, is now wheelchair bound, much less conversational (phone calls are out), and is in Memory Care. She can no longer visit my apartment as there are stairs-- the last time was at Thanksgiving. She'll be 94 in July. She can still feed herself but when and if that ability goes, she'll have to be moved to skilled nursing.
To tell you the truth, it doesn't get any easier for me, emotionally. Each time her abilities decrease it breaks my heart. She still knows me and I get a big smile when we see each other, and we both tear up sometimes when it's time for me to leave.
I still value and cherish the time I have with her. It's just very different now. I hope that telling you about my experience will help you with yours.
My own dad lived two years after being diagnosed with ALZ. He was 91 when diagnosed and 93 when he died. The ALZ effected his ability to swallow which led to aspiration pneumonia.
I think you'll find it helpful. Please check out Teepa's other videos on YouTube. I think you'll find them helpful.
At first I got away for a week each year, and we had part time agency care givers. Then my spouse became ill, and I took on some of his chores, and hired others. But I could no longer travel to see out-of-state relatives, or have a weekend get-away with him. It is a lot of effort to be the management. Then, in my 70's, I became ill and burnt out. When my aunt went to a rehab, a friend and I went NH or MemoryCare hunting, found a wonderful not for profit place owned by the attached hospital. I applied immediately, and was lucky to get her in quickly. I learned a lot about myself as well.
I don't know if this helped or not, but it gives you some things to think about. If you haven't yet, see an Elder Lawyer and get papers done. I just discovered my aunt never named an executor, and the state she died in requires probate, even if relatives have agreed and no one is contesting. Some here have had nasty surprises.
One sure thing is, home care will age you quickly. Bless you for doing it already, and good luck with your next stages, yours and MIL's.
Patients require more care as time goes on, whether its physical or mental. Cognitive decline doesn’t improve. Ever.
there will come a time when you won’t be able to leave the house, let alone get in the shower or run to the store by yourself. Caregiving is 24/7.
in the meantime, consider asking her doc for some mood- stabilizing drugs. They can help with the anxiety and anger issues.
In the long term, do some legwork now for memory care. My mother cared for her mother in law, my gram, in our home for 48 years. My gram went into Alzheimer’s care unit at age 90, and she died at 91. The evaluation team said my mother kept her at home “way too long”... as she required 24/7 monitoring. My mom passed away at age 74... she never actually had “a life if her own”. She missed so many things with the family, her grandkids, and her friends because she was caring for her mother in law, and couldn’t leave her home alone. It took a toll, and now she’s gone.
Just make sure you account for things you won’t get to do for the next 10 years, and seriously weigh the cost of keeping mother in law at home with you. In my mom’s case, the things she didn’t get to do she will never get back, and now it’s too late anyway.
best wishes, as its not an easy road.
Short term, I suggest you contact your Area Agency on Aging to find out what adult day care and in home respite care options are available for your MIL. Having even a few hours without care giving duties each week lowers your stress levels a lot and can allow you to care for someone a lot longer without compromising your own health.
Long term, I suggest you begin exploring MC placement options and determining how you might be able to finance that option, maybe private pay until Medicaid. A lot of MCs that do not accept a Medicaid admission will accept Medicaid payments after a number of years (1-3 usually) of private pay. If you are sure Medicaid will probably be needed at some point, I suggest only considering MCs that accept Medicaid after private pay.
If you can get to a point where you can "see" the repeated questions and other behaviors as the disease and not the person you have known for so many years, it can get easier to tolerate the behaviors without getting so stressed out, at least most of the time. I try to hold an image of my mother as she was before MCI and answer that lady, even when the lady in front of me has asked about her shoes 5 times in the last half hour. Your MIL's actions are not within her ability to change but you can still change your reaction to those actions.
Good luck and God bless you for taking on MIL's care.
As for OP - decision should be made by you and spouse jointly (the rest of the family would be nice, but don't hold your breath on that!) so that you both agree if/when she would need to be moved. If you are providing all the hands-on care and spouse is not really active in participation or interface, then certainly your thoughts should hold more weight. Some people who are not hands-on or don't interface much with their own family member do not see how difficult it is. If you are in this situation, then definitely you need a weekend off with your buds and spouse can take over to see what it is like...
While discussing this with spouse, check out various places, gather all information and ask MANY questions regarding what is included in the cost, what happens if she needs more assistance, etc. Consider what you think are the best places if she can self-pay, but if you think she might need financial assistance, it is better to only consider Medicaid facilities as you only want to move a person once when they have dementia. As long as she doesn't need any skilled nursing, look at Memory Care facilities, not a NH. Bring spouse along, at least for a second visit to the places you prefer. As for the rest of the family, if they start piping up after the fact or criticize, have no problem putting them in their place. They washed their hands of it, so stay out of it now - period. Do NOT let them guilt you on anything you decide. They decided to butt out, so they can keep their stupid butt out!!
As this is your Mother-in-law, and not your own mother, let your spouse first arrive - on his own - at the decision that the situation needs to be changed.
I’m sure this year (and the general transformation of his parent) has been very painful for him (even if he hasn't been around as much as you). His siblings have deserted him. He probably expected them to grow closer and provide support in these circumstances. If you push too much and too hard, he could feel deserted by you also.
If your spouse is in denial, take a “girls’ trip” or week/weekend away with friends. Put him in charge for a while so he understands just how difficult and unmanageable this has been. When he says, “this is too hard,” hold his hand and agree. After he arrives at that conclusion, reassure him that the quality of the time he spends with his mother will improve when someone else is assisting with her personal care.
Keep in mind that as her condition worsens, it might become increasingly harder to find a facility With an available bed.
Don’t focus your care on MIL, focus your care on your husband. He’s suffered a tremendous amount of loss. He needs you.
It sounds as though you and your husband (?wife) should take the credit for a good year's trial, during which you have given MIL an excellent transition to being looked after, and hand over to a carefully chosen facility. You have nothing to apologise for or to be ashamed of.
When you say the siblings are not supportive: is that because they disagreed with this option beforehand? What was their view?
My doctor asked me what I was doing differently? My stress level declined enough he could tell something changed. mom is gone now, and I am still taking care of aunt. My family is burned out, then won't even go with me to visit.. we are only a 2 minute drive.
Talk about burned out. Do your homework, and find a place close to your house so you can just pop in anytime you feel you need to and see her for 4 minutes and leave.
The deciding factor is a personal line. I can't deal with my dads diapers, he needed professional care. Others have their lines, you and your spouse have yours. It's okay to not do certain things, don't let anyone tell you different. I knew my dad would not be well cared for because I couldn't deal with his business, it's wrong for me for multiple reasons, so I had to put him where he would get the best care possible.
I guess you could call it the deal breakers.
Most importantly is making sure that she is getting the best care possible and having all of her needs met and quite frankly I feel that with Alzheimer's a facility is the best option. They require a village as they decline. It is such a long slog that having people not emotionally involved is a better solution, in my opinion from experience.
Hugs, it is an awful disease that steals our loved ones one brain cell at a time.
My Alz. mother lived with me for 2 years, and she turned the life of my whole family upside down. No breaks, no vacations, no private time, no peace, only stress 24/7. I was burned out. My kids and husband stressed. Finally I had to move her out. We couldn't stand living in a psych ward any longer.
My recommendation to you is to make a plan for your exit out of this situation. At what point will you say you've had enough and draw the line? Discuss that openly with your husband and siblings, tell them they are expected to help.