Introductions: Are you caring for someone with dementia?

Hello @friendofmayo. Welcome to Mayo Clinic Connect!

Have concerns been addressed with your husbands physician?

Here is what I did May 2015 after suspecting Dementia of some kind in my 83 year old husband:I typed a list of concerns such as getting lost while driving, severe short term memory loss,  unprovoked angry outbursts,  etc. Then at his next scheduled primary care physician appointment,  I gave this list to his PCP.  She immediately administered the mini mental test, which he failed, of course, a Brain CT Scan, blood work, x-ray, EKG, MRI of the brain and a neurologist consultation.All problems were ruled out except VASCULAR DEMENTIA.Without the documentation you are treading water.With the documented diagnosis, proper treatment was begun.  It has not been easy.  He was given a driving evaluation test which he failed.  He was tricked by me into exchanging his driver's license for an identification card.   He l o s this car keys. He threatened to shoot himself.   My daughter and her husband came and got the guns.He is flaming angry about his guns.*But he will not die by shooting himself!*He remains angry about his guns being gone.  My 54 year old daughter died  unexpectedly of acute inflammation of her heart, and for TWO long hours after her death all he could do was stomp, slam doors and swear and want his guns back. So the county Deputy Sheriff  is disabling his guns so they can be put back in the gun case .My daughter is dead. She leaves a husband, daughter and  her Granddaughters.  My husband (not her father) has escalating Vascular Dementia.   I am now beginning the process to take advantage of respite care.  The next hurdle/problem I am now facing is how do I get him to agree willingly to respite care??Please advise. 

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First let me say how sorry I am that you find yourself in this situation. I don't profess to have an answer for you but I'll make this suggestion. Get in touch with your local alzhiemers association. Perhaps they can help you. Maybe a confrontation would be in order. It would be much like what one would do for a person who is in denial about a drug problem. Do not do it without help from a professional. You need to continue to be his safe support but the issue should be brought out in the open. Us guys never want to admit we have a problem so it is much easier to deny it. If he does have alzheimers. your relationship is going to change the change can start now. My wife is going on 15 years since the original diagnosis and is now 100% dependent on me. Let me stress the need to start with the local association. They can guide you. Keep in touch. Sorry to say there is no easy way.

Hi there, I found that when I came up against my husbands illness, his state of mind or headspace as I like to call, his mental capacity to acknowledge or accept what was going on, he was incapable, at first. New information had to be broken down into smaller chunks and my expectations had to be guided by the medical professionals. After having private talks with them to discuss what was going on in the house, they helped me navigate through what was a potential land mind. I quickly came to realise , I was the first person to go through this kind of thing. The medical professionals asked me questions, and offered suggestions and choices I could slowly get myself to consider and accept. It’s a process. Talk to people who can give you options, you’re not alone. That was such a relief for me to know. The more questions you ask, the better. Speak to your Carers Association as well. Have patience with yourself too. Each day of a Carer can be full of new challenges to consider, take good care of yourself in the meantime. Wishing you hope and clarity.

mnina, you are so benefited by having doctors/professionals that are willing to work with you. Even after putting mom in memory care my sister and I seemed to know more about caring for Alzheimer's patients than the staff did. A simple change in medications by the pharmacist reviewing mom's case - and not checking for a UTI before changing the meds -- led to mom getting sepsis and dying. If you get a chance, please share some of your suggestions to those who are here that struggle with their loved ones care.

I don't know if this will help with your decision or not. This month marks 15 years of my Mom being diagnosed with Vascular dementia. I try very hard not to lie to her. It makes me crazy when others do because it just adds to her confusion. There have been just a few times over the years where she has asked if there is something wrong. We have talked about it. Sometimes it was very upsetting for her. Others not so much. Mostly there is worry about who will care for her. I reassure her. My suggestion to you is to think about talking to her about it if she asks. Walk her through your plan. Let her help with that plan if you can. If she doesn't ask then don't. Give your Mom what ever little piece of control/decisions she is capable of at this time. My personal observations with both my parents is that loss of control leads to anger. Even if they do know why. Though in our Mother's cases they don't remember why. Best of luck. Go with what you feel is best. You know your mom.

Good morning, I lived with my Grandmother during her illness of Dementia/Alzheimer’s, she would get glimpses of clarity, where she understood that her favourite granddaughter at times, appeared to be a stranger to her, she would phone my uncle and ask, who is this strange woman living here. When she had these moments of insight, it brought her eyes to water as she looked at my with great guilt. She knew she had no control over this but she felt guilt anyway. Those moments of insight passed as the disease took over. She did her best. As I, with what little I knew then. We have more resources now . Lack of control for my husband definitely brought on anger. Allowing him to make as many decisions, however small, helped, kept me from Taking Over Too Much and helped him settle. Each day I kept and still do a gratitude journal, to help me stay balanced in the toughest of seas. It helps keep my mind and eyes open to the good things, however few in each day. As a Carer, I try to stay strong, to know when to rest, walk for exercise and just sit and take some slow breaths. This is the most challenging chapter of my life. I wish you the best, one day at a time.

I believe telling or not telling, talking or not talking about the issue, is it good or bad, depends a lot on the person. Some people are better prepared, have better personal resources to have a talk about them going on Alzheimer or other type of dementia. Some people are not, and they would only get anxious, stressed, which is not going to help their situation nor the planning ahead. I believe it depends a lot on the person and the stage of the disease. And in some way, they give us signals if they want to know or not and if they prefer just to rely on us to make decisions and guide them. I feel like that's happening with my mother. She's 88 and she comes from a very different generation. She is using some medications, doesn't ask what are they for, and at most I would tell her they are for improving her memory. If she realizes once a week that her memory is failing and bring the issue at our conversation, I try to be natural and tell her that it is true but it is only natural as we age. That would be it. I fear that if I go beyond that, she would get anxious and suffer for something she can't do anything about. It is something that protects me but also her. And it would be a conversation she would forget in an hour and in 4 more days we would be there again....I feel it is pointless to have that conversation. I have no relatives so there is no one else involved. But if there were, I believe I would try to do the same. I am lucky in that she's smart. And though that issue has not been talked about, a couple of years ago she took some measures that could probably be explained by her anticipation of something happening to her in this regard. Giving me a power attorney, making sure utilities are paid from her banking account, etc. That simplified a lot of things.
There is no one solution or strategy. The person, the context, the phase of the disease, people involved. It has to be a customized strategy. Health care providers should be able to help to think through this and develop the best strategy possible.

To lie to your loved ones in this situation is tricky....I also try hard not to with my mom, but sometimes I realize it is the only way not to confuse her with complex explanations, or adding to her anxiety. Let's say she want to visit a cousin who's in an hospice. I know it could be very disturbing for her to see her cousin who she loves dearly in the present state. Her cousin is not able to keep a conversation, she is basically lost in her mind, and very little of what she was and shared with my mother is left. So when my mom proposes to go and visit her, I simply tell her that it is not allowed. She regrets that, she brings some memories of their relationship and then change the subject. I couldn't possible bear my mom's suffering seeing her cousin so ill or even just thinking and imagining that her cousin is so bad that she is beyond normal interactions. I don't want that image in her brain. If she asks for a pill she is taking, I give her half truths, not telling her that it is for her dementia but simply for improving her memory. Sorry. Perhaps what I am saying is too obvious. But at the beginning it was an issue. How much should I tell her, is it ok to lie to her, etc My first goal right now is avoiding stress, anxiety, worries, confusion. I wish I could say my first goal is reaching happiness, happy moments. But for now I just can concentrate in the basics.

I am caring for my husband too! I too would love to get advice and share experiences! Hope to find out I am doing the right things, this is such uncharted territory for us.