While I am not the direct caregiver to my mother, I'm very worried about my father who is. Little background: my father (74) has always been the one with ill health), mostly heart related, but has been stable for a while. My mother (71) was healthy as a horse but over the past 6 years, she has started to develop memory issue and was diagnosed with Mild Cognitive Impairment. My Grandmother (her mother) died (almost 10 years ago) after a 10 year fight with Alzheimer's, where she ended in a completely vegetative state. While this was happening, my mother was always convinced she was going to end up just like my Grandmother. I used to tell her that she was creating a self-fulfilling situation when she would get lazy with her thinking and excuse it by saying "well, you know how my mother was."
While my mother is STILL very physically healthy and capable (she drives herself, she babysits her grandchildren, etc) she has a lot of moments of forgetfulness and just completely shuts down some days. She tells the same stories over and over again. She also tends to adapt other people's stories as her own. When not traveling she's obsessive about doing laundry and watching TV. When traveling, she has started to forget things...frequently 'losing' her jewelry to one time forgetting entirely to pack her own clothes (to which she claimed someone must've come in the room and stolen them because she would NEVER forget to pack).
My father is now managing her (a place he NEVER thought he'd be). I know he just wants to break down and cry, I've seen little glimpses. I know he feels helpless - he's a very smart man, but he is completely lost when it comes to this. I don't know how to help him. He still tries to protect us and even her. Often 'prepping' her friends (they're still very social) with how things are. We've had a 'family meeting' with her to discuss her condition. She listened, said she had no idea she was so bad.. promised us she would be more active (most days she does absolutely ZERO), drink less (she loves drinking and will often get frustrated if you don't drink with her - many of her friends do drink with her) and listen to us more but she hasn't done any of it. She doesn't feel old so she doesn't want to go to a senior center for stimulation (neither does my father).
I just feel so lost with how to help. What to tell them to do next. Do you just sit back and let it go? How can you fight? How do you motivate them? What kind of support should I be giving my father?
Tell the truth, because u May regret it after, if, they pass. I know I did. Once he asked me what kind of father he had been, and I lashed out and told him distant. We were like two peas in a pod. Always equipping at the dinner table which I missed and of course still do. And i was hot tempered. Which caused. Lots of flare ups but heck! There was so much laughter in between. I may have given him a respite from his decline by jogging his memory. I don't remember my mother crying once w me thru the whole ordeal. Maybe she understood I didn't have as much faith, maybe she cried silently when he would reach for her hand at night --she would often tell me that--sadly of course. But she always says he was always smiling SHE remembers his patience and laughter, not his temper, as I have called it. He didn't really have a temper. I was just rebelling angst him and we would fight. I am really trying to pray to overcome MY hot temper. My mother is not just a trooper even tho that is how i often describe her when I am not sure if someone believes in God. She has rock-solid faith. Practically every moment of the day she is praying for the strength to deal w all she has on her plate. Severe arthritis, an improper healing of her left hip from surgery, severe asthma which SHE has learned to keep under control, hammertoe, bunions, congestive heart failure which again, w just a little prompting from me, She manages. The latest is a hemmorhoid and right shoulder that just doesn't want to heal. But she jokes, has tremendous intuition and can turn my laughter into tears. So believe there's a purpose behind all this. My purpose May be to save ur mom if she does have a tumor. Lastly, take away the car keys. Once my dad drove to a nearby mall and got lost. We were worried and frightened sick. Even if he had a cell, he was in no frame of mind to use it. He protested at first, but we held firm and eventually he forgot. Truly a blessing. God works in ways we will never understand. Only as they unfold before us.
The better prepared you are the easier is will be to understand the changes that happen with this disease. It will never be easy! However, when you can recognize a change or you have an idea what may need to be dealt with next, you feel better in control. In our group we call it controlled chaos.
Whatever you do, NEVER promise that the loved one will not be put in a care facility. That is not realistic. What you can promise is that you will take the absolutely best care of them that you possibly can. My husband and I made a rule when he was in the early stages of his dementia and I repeated it often. Our rule was, “When you become dangerous to me or yourself, or I am no longer able to physically care for you, it will be necessary to move you to a care facility.” Even though he didn’t understand a lot in his life anymore, including who I was, on the day I moved him into his now home he had a moment of clarity. He looked at me and said, “I know this is where you need me to be.” I feel like he understood. Somewhere in his brain he remembered our rule.
I wish you all the best on this long and difficult journey. Keep a journal of the happy/funny times. Those are the things you’ll want to remember. I get the most mileage out of the story of my husband coming home from walking the dogs. He was starting to have delusions but I didn’t know that yet. He was very upset when he got home so I asked him what was wrong. “I’m tired of all the kids who stop me to talk about sex!!!” 😳🤣
If dad doesn't feel comfortable sharing with you, find a trusted advisor for him to review with. There's some planning he should do with an elder law attorney. Mom's dementia journey may be long and very expensive and he needs to protect himself financially.
It sounds like they could start off in IL. They'd have the assistance and advice of the staff and neighbors who are accustomed to exactly their situation and can be supportive in a meaningful way. Your dad is the one in danger. Dementia kills caregivers. They become increasingly isolated and consumed by their spouse's needs until the stress and depression takes its toll and then there's the double whammy of suddenly having to find care for mom when dad winds up in the hospital. Plan ahead.
When you're shopping for a community, ask a lot of questions about resources for couples where one has dementia. Sometimes they have a day program within the community or a partnership with one that's nearby. Your dad needs a break; several times a week, if not daily. In a community, he'll also have others to socialize with and 'recharge his batteries' so he can tackle mom's care. Also, if finances are tight, take a critical look at their AL and memory care wings. To conserve assets, dad could choose to move into AL or memory care with mom when the time comes (instead of taking two apartments). That's not an ideal situation, but you want to test if the management of the community is proactive in finding solutions that work for families.
Good luck.
p.s. - Don't bother reasoning with your mom in the way you used to be able to. You will only frustrate yourself. She is in brain failure, regardless of how cognitively intact she may seem at times. Google Teepa Snow and watch a few of her videos.
A few additional thoughts:
1. Having one's brain deteriorate is not a "self-fulfilling situation." It is a pathology in the brain. It is not caused by wishing for it or thinking about it. Bad health practices may make it worse, but even those don't cause it. I remind you of this because it really won't help if somewhere in the back of your brain you are blaming your mother for her condition.
2. When your brain is broken, you no longer have full control over your behavior. You may very sincerely intend to be more active, and yet not be able to put that intention into practice. Again, blaming the person with the broken brain is not productive. Help the person be more active, if that is what seems to be needed. Go for short walks with her. Take her to a flower nursery and walk up and down all the aisles. Don't rely on her promises and intentions. That really is not within her control.
3. Both #1 and #2 come under the advice to "learn all about the condition your loved one has." Then you can help your dad understand what is going on better, too.
4. "Prepping" her friends is smart! It is easier to take behaviors in stride when you are expecting them than when they hit you blind. I wonder if you father would like an account on CaringBridge? I suppose that would depend on how many of their friends use the internet. But it can be a good way of keeping friends and loved ones informed.
5. Realize that MCI is not always associated with ALZ. Sometimes it does not progress beyond mild memory loss, and when it does it may reveal a dementia other than ALZ. I hope she is being regularly monitored by health professionals.
6. RESPITE! Your dad needs regular breaks from caring for Mom. This is critical and probably the best thing you can do for him.
7. Sometimes Dad and Mom can continue doing something familiar but may benefit from help. Are you a daughter or son? If a daughter going along on outings could relieve dad of bathroom concerns, for example. I found it very helpful for one of our children to come along when taking my demented husband on outings.
You are very wise to be thinking ahead about this change in your life circumstances. I wish the best for you all.
Read a lot on this site. I have found that reading here gives me tips and pointers for things I need before I actually need them. Plus just knowing I am not alone.
Find out options for your Mom for if she gets to the point where your Dad can't care for her. Maybe start now having help come in just so she and your father get used to it. Figure out financially what the options are for Assisted Living or Memory care. Will your parents be able to pay for it? Or will medicaid be necessary. Possibly even get your Mom's names on the waiting list at a couple good places so if things deteriorate quickly you have choices.
And consider getting a complete neuro-psych work-up done by specialists in dementia. There are kinds of dementia besides Alzheimers and it can make a difference in medication/treatment.
Would your father be interested in support groups for caregivers?
Good luck!!
Dont push the Senior Center thing. My husband and I were never the sort who would enjoy that either. Some of them can be like the lunchroom in Junior High.
Also, have Dad do some reading on Alzheimer’s. If he knows what to expect, it will make things easier to accept.