It's a huge adjustment but I'll figure it out. But my son gets very frustrated and angry whenever I forget something or make an error. I feel humiliated and hopeless. My memory isn't likely to get better so am I just supposed to accept his harsh judgment -- a constant reminder that I am less than I used to be and very unworthy. It hurts like hell.
I am very sad and equally feel some anger that your son is responding to you this way. He, likely both doesn't understand what is happening and (doesn't have the wherewithal to approach you with compassion) and/or he doesn't know how to manage his own feelings of sadness and grief knowing his mother is going through this (not knowing isn't a free pass, though - you are his mother.)
Of course it hurts like hell. And, no, you are not 'just supposed' to accept his harsh judgment. Tell him how it feels to forget and to be meant with his harsh reaction. Tell him that if he can't be more compassionate and understanding - of what YOU are going through - then to step away 'for a while' as his wrath is something you do not need on top of this diagnosis.
Tell him to watch Teepa Snow's webinars, You Tubes, read her books. In other words, educate himself on what dementia is and does to a person (and their brain), and the family unit. Hopefully, he cares enough to take these proactive steps - to understand YOU better - so he can care for - and about - you directly now, and as you continue to change.
And, yes, it is difficult to be around someone who forgets and repeats themselves. This is why we need to understand what the brain is doing, realizing that the person cannot help how they are / respond to outside stimulation / communications. He needs to learn to take 'TIME OUTS' before he responds to you in or with anger. Tell him this. "Leave, please when you are triggered before you react in anger towards me. It hurts."
If it is possible, I would recommend you find a social worker or professional who works in this field and talk to both of you, together. And, then perhaps talk to him, separately / privately. He may 'just' need some support to deal with his feelings of this new news and his, understandable, ignorance of this condition.
I do feel it is important that - when he is open to hearing this - that you tell him that the time is NOW to say what and how you feel - have heart-to-heart discussions, authentic discussions, sharing feelings. As there will come a time when you won't be able to participate in these conversations with him due to not remembering.
In other words, TIME IS OF THE ESSENCE. Hopefully, he will not waste whatever time you have left being as aware and cognizant as you are now. This is gut wrenching difficult stuff to deal with - although you know what is coming down the line (although I do not know how / if your condition will progress, I presume it will) so you have this 'gift of time.' Ask him to use it wisely, with you.
Most family members do not know how to handle dementia as they are thrown into this situation without any education, training, prior knowledge. Most, or certainly some, family members continue to talk to their beloved / family member as if they are the same person as they used to be ... because they cannot grasp what is happening.
If you are able to find more / other support for yourself elsewhere, I highly encourage you to do so. Do not rely on your son for much at this time - as he simply doesn't have it in him to give to you in a positive way. He doesn't know how to respond or 'be.' He is a fish out of water. But, then so are you.
Somehow, he needs to access his compassion about and towards you directly. First, he might need to have a major cry or breakdown emotionally to accept what is happening to you. His anger is likely a defense against feeling the pain and sadness inside him.
The other need to consider is your housing / safety. Depending on financial ability, you both might want to check out seniors housing, multi-levels of care. You don't have to make any decisions now although it would be good for both of you to know what is out there. Gena
However common, your son's attitude and behaviour are not acceptable. I can't imagine that it would be easy for you to cut him out of your life - you love him and you don't want to miss him, especially while you are going through something so very difficult.
Not only does he need to understand cognitive decline better, but he needs to understand that his behaviour is harming you. You will never have this time back and your condition will not improve. But it doesn't have to be all negative - I still had some lovely moments with my mum over the 13 years she lived with cognitive decline from a stroke and vascular dementia.
He needs to be supportive and kind, not abusive and fault finding. But he can't learn that on his own. Please show him your initial message and some selected comments (ignore ones that seem to think you can fix cognitive decline with diet!) as that might help him to change his mindset more quickly.
You need back-up, as too many people are quick to dismiss the experience of someone with any brain issues, especially those affecting memory. In the absence of any in-person support, use this thread to back you up.
I wish you all the best. Please prioritise yourself and take care.
Your son could be trying to get you to understand something fairly simple but for whatever reason you can't. My mother is 92 and there have been situations where I have lost my patience with my mother because she can not grasp something simple and none of my answers are making sense.
For example I once had to drive my mother to a specialist Gynecologist for a medical issue she was having. Her PCP sent her to this office and the drive was 40 minutes away. During the trip my mother asked me multiple times if I knew anything about the Dr. Each time I answered a plain and simple "No". She then asked me if I had any female coworkers etc that had seen this Dr. again I said "No". Then she asked if my PCP had ever sent me (male) to any of the doctors in the office, again my answer was "No". Then she got frustrated with me and said "I find it hard to believe that you don't know anything about this doctor, because I just want to know if they are a quack or not".
I pulled the car over and looked my mother in the face and told her. "I don't know anything about this Doctor because they are a specialist Gynecologist and I'm a Man and lack the plumbing to be seen by this Doctor. I don't discuss Gynecology visit with my female coworkers because it's none of my business. Your PCP wants you to see this Doctor because you have the plumbing that they are qualified to treat". Was that a little harsh? Yes but my mother was just not understanding why I had never been to this Dr. or why I didn't know anyone that had.
Best of luck to you and yours!
Wishing you all the best.
Sending best wishes your way. This is a hard road on everyone.
Most of us are looking at life from the perspective of the adult kid with an aging parent so I really appreciate that what you are saying may even be how MY mom feels. I hope you can live independently for a very long time with a slow progression of the disease. I think that in-between place of mayyyyybe being able to live on our own but mayyyyybe not is the hardest place to be. (My mom can right now, but she is being so stubborn in the areas where she needs help staying safe, we know she will never let anyone decide for her when it is time for assisted living or memory care.)
But wait- that's not what I wanted to say! I am an Activity Director at an assisted living community so OF COURSE I see all the glittery parts of moving into a community where we can stay socialized, exercise our senses, brains, & body!! I think it is heartbreaking when people wait too long to move in & then are no longer adaptable & able to enjoy the GOOD parts of community living!! Also- because you are cognitively able now, there are always people there who aren't- & the best thing in the world is to be an able bodied person like yourself, take others under their wing & help them at planned activities or even just reading aloud to them. ❤️
PS- The places I've worked always has a group of ladies who "do lunch", whether that is w/ the one with a car or sharing an Uber!!
I understand there is a bucket of reasons "why not"...
I just wanted to share the fun part from a different perspective!
He only agreed to move when the social worker and hospital pushed him into it because they wouldn't release Mum from hospital because there was no lift to their flat - it just wasn't suitable or safe.
But it was too late for Mum - her dementia was too advanced and her health too poor to enable her to join in with the activities (except the singing group I took her to). It was heartbreaking.
My stepdad hated it there and complained constantly- mostly because he felt he'd been forced into the decision. So, once Mum died, he left and went to a different sheltered housing complex, which is also closer to his daughter instead of me.
Now, he joins in with all the social events there that he previously shunned and moaned about in the one he lived in for a few months with Mum.
I'm happy to see him embracing life, even going out to a music festival at a local park with his daughter, but it also upsets me to think of Mum having been shut in a tiny flat because she only wanted to do things with her husband (he was her safe place) and he refused to move somewhere suitable for them both and only sat in front of the TV.
Mum had been a sheltered housing (IL & AL) manager and lived onsite, so I grew up living there in my teens. She planned lots of activities for the residents, and I know how much they enriched people's lives. Her granddaughter, my daughter, helped out with Friday afternoon teas, just as I had done.
I really believe that moving to a "forever home" while you still have enough strength and health to make use of it is best.
As far a continuum of care model , IL to AL and then SNF. Make sure rhe SNF has a good rating! Many don’t!
Start with hiring helpers on your own, with an official care giving business! Licensed, insured and vetted.
Assisted living is where participants fall through the cracks on self help health care.
Stay on true Medicare. Don’t change to an Advantage plan. Have a primary care doctor you choose and trust!
You need a companion a few days per week. You need check in routines to see if you are ok. If you have balance issues or need assistance with mobility issues, this can facilitate moving into AL.
If you need help with medication reminders, the cell phone does this with programming. If you ate sending checks improperly written, or bouncing checks, hand the finances to trusted persons. Or regularly visit your banker to assist you before assigning them to someone else. Many widows run into this decision making conundrum. Your children can help you with this preliminary approach before wasting spending on a system that takes more than it gives! So many rules to abide by. Social Cliches and food service budget cuts can make life miserable. Isolation is not reduced in the confines of AL. Downsize your belongings, so not to burden your family with the task!
AL is expensive and gets more respect than it deserves.
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Men in general, at least some of them, tend to think they know everything and have serious frustration levels with us mere mortals who suffer from any kind of deficit. Be it a hearing loss, cognitive decline, or a set of rules we've asked them to adhere to. Snicker. Give him a taste of his own medicine.
We ALL have issues to deal with, and we ALL deserve kindness from our loved ones. Unless we are dishing out vitriol ourselves, then all bets are off.
Take care of YOURSELF, my friend, and stand UP for yourself as well.
My mother has now advanced to the point where she needs 24/7 help. To be honest with you she was not living much of a life in her IL cottage since she was very isolated other than my visits and her caregivers. My brother felt that getting all the in home help she needed would be very expensive and I had a hard time finding skilled caregivers for her. I started looking at MC facilities for her and found an excellent one which was less expensive than getting 24/7 care. When she first moved to the IL cottage she chose a place that had the continuum of care options but it was a two hour drive from me so we found somewhere closer to where I live when she needed to go to MC. She was never in AL, we found in home care instead. I think we both would have been happier had she taken that step as well. She is doing so well in MC and seems so much happier that I am almost jealous of the care she is getting! She is now more advanced than you are but she is doing better than when she lived alone. I kind of wish she had been open to assisted living at an earlier stage, I think it would have helped both of us. Even if you find somewhere that offers all stages of care and start in IL you may find that having the option to move to AL and eventually MC as you need more help can be worth it. It would also allow you and your brother to have a better relationship since he won’t feel that he has to take over all the responsibilities for things you can’t do. Before we got help for my mother I was trying to take care of her needs while trying to manage my own life and it wasn’t working. I started feeling like all I did at her place was work and we no longer did fun things together since I had the two hour drive each way and had limited time no matter how often I went to see her. I hope your brother can come around to understanding what you are going through. No one can truly understand everything about the experience until they are going through it.
I wish you the best, whatever path you choose.
As the disease progressed, she began doing things that frightened me. She would leave the stove-top burner on or the over on. She left the kitchen faucet on twice with the stopper in place, and it overflowed. She would leave the refrigerator and/or freezer doors open. Then she began forgetting to take her medication 3-times daily so I had to set my phone alarm to remind her. After a while she became argumentative and would tell me she had taken them, but obviously hadn’t. She would tell me she didn’t need me to remind her. Then she would begin to place things in strange places and when found, she accused me of doing it! Finally her balance began to deteriorate and she would fall. Sometimes she could get up by herself, but other times I could not help her and I had to call EMS for help.
After things continued to get worse, I, along with her family, decided she needed to be in an assisted living facility. So about a year ago, we moved her into one. Now she’s in their memory care unit because she has attempted to leave the facility a couple of times. She had even packed up her room and was waiting for whomever she thought was coming to pick her up. Her judgment is impaired, which is another symptom of this disease.
Depending on your condition now, if you are able to take care of yourself, and if your family is comfortable with you continuing to stay where you are for now, then, in my unprofessional opinion, I think you could remain at home. But my wife, even up to today, thinks she is capable of taking care of herself at home and does not need to be where she is!
This is a hard decision to make and you should rely on the opinion of your family. They are truly watching out for you and want you to be where you are safe. Trust them! I will be praying for you.🙏
What we may lose in memory as we get older is often balanced by increased patience and kindness, You have a lot to offer. Find a place that recognizes that, if your son cannot accept your changes. I am sure he loves you, but he is afraid. I am sorry you have to go through this. You deserve happiness.
I finally had to remove my father from that toxic living environment, and he was so much happier. He lived in Florida for 8 years with me, enjoying life.
I'm sorry. (Memories are still fresh.) My point is, the constant reminder is not suitable for your decline. You need support to live your best life during these upcoming years. My father lived with dementia for 16 years, and he did not pass from side effects of the illness.
You can live a happy and healthy life surrounded by positive people who reinforce you. Do you have options, and if not, would your son be open to counseling to understand the illness?
My dad started out with MCI 16 yrs ago. He is now in a nursing home with Alzheimers. Over the 16 yrs he has lost the ability to do a lot of things. But he is still my dad. I love him as much now as I ever have. When I’m having a bad day, I can visit him & may only get a smile, but it goes straight through me & makes everything better in that moment. He still has that power.
So please remember you are valuable. Your son hopefully will learn more about mci & dementia & be able to handle it better going forward.
Best wishes to you both as you deal with this new reality.
Not sure how old your son is, but I will assume not a kid or a twenty something. As an adult, he can grow and learn about this situation both for him and for you!
Others have suggested a therapist for you, great idea. It might be helpful to have your son join you at some sessions w/a therapist OR have a few joint family sessions with a therapist who specializes in CTB-type (shorter, not so much examine all the trauma of one's upbringing) to help unpack all of this. Your AL facility may have some recommendations, the local Area Agency on Aging, your physician who diagnosed you with memory loss may have recommendations too. Worth finding a therapist who specializes in "grief type" situations.
Back to your question: No you should not have to just take his "harsh judgment." You both are going through a grieving process that is sad, scary and unpredictable. That does NOT mean you have to be his personal punching bag and nor him yours.
Working to set some boundaries and to work towards honest and open sharing about what this means: the fear, the sadness, the what next, any planning for what is next is a goal to work towards. He can be angry and frustrated with the condition, disease or situation but it is NOT your fault -- you did not ask for this and he did not ask for this. But you both are on this journey now and you both can worth to find ways to not blame the other or tear each other up. Hugs.
Maybe start with voicing your feelings: "I feel humiliated, hopeless and sad when you get frustrated or angry with me when I forget something. I did not ask for this and nor did you. I need you to work with me, to support me as we go through this situation. Perhaps we can talk together with a therapist about this. Also, you might also find it helpful to get your own support as my memory decline may get worse over time and you need to work through your grief on this without taking it out on me. I am angry and frustrated; scared too and I do not want to take it out on you either. Memory loss sucks. I love you and want to make our time together as best we can, while we can."
Hugs again!
It is probably a good idea for you to consider what trips or other things you’ve put off doing and just go do them. You might also want to consider how you would want your future care to be managed and if you want to go into assisted living or would want caregivers in your home. You should decide these things so it is done the way you would want.
I wish you all the best.