Introductions: Are you caring for someone with dementia?

Dear pearlandpeacock,
Thank you for sharing a bit about your situation. I did want to express my concern about your husband's "going out". It seems as though, if he is turned around in your own home, that your husband will most likely become "turned around" in any setting, including a extremely familiar neighborhood. I understand completely having to deal with the frustration he's expressing at your wanting to know when and where he's going...but, there must be a way of "allowing" him some freedom in a setting where he won't become lost. I even wonder if you could follow him from a distance? This is a difficult season when the person with Alz. still wants some independence and freedom, but really doesn't have the ability to understand their limitations... I'm wondering if anyone else has suggestions about your situation?

Hello @kmkm. Nice to e-meet you here. I am Scott and I was a secondary caregiver for my MIL while she had frontal temporal dementia for 23 years and the primary caregiver for my wife during her 14 year war against brain cancer, during which she suffered from many dementia-similar symptoms.

I AM NOT A MEDICA PROFESSIONAL IN ANY MANNER, so I speak only from my limited experiences. In both my MIL and wife's cases they craved routine and familiarity. While it can border on boring at first, it became much more soothing and comforting to them than not knowing what they had to 'worry' about anticipating as being next. I realize it can feel stifling to the caregiver, but in our case it was an important coping feature for the patients.

Also as something went from enjoyable to frustrating, such as a game or chore, I was quick to eliminate it from the schedule. My MIL loved puzzling. We had to move from huge jigsaws to preschool simple, then to none but it helped with keeping doing something for as long as possible and lessening the anxiety and aggravation. .

I would also suggest, as tough as it may be, if you have not had all the necessary 'talks' about any issues outstanding, last wishes, etc. be sure to do that ASAP. We did those with my wife and it made things immeasurably easier on the family. In my MIL's case, the family was too deeply in denial and lost that chance. It made several things more difficult for them down the line plus some family members were left carrying issues with them beyond the grave, which is sad to witness now.

I wish you strength and courage!

Hello @pearlandpeacock Nice to e-meet you here. As @colleenyoung said, I am Scott and while I am NOT any kind of medical professional, I was the primary caregiver for my wife (in our home) for 14+ years as she battled brain cancer with many symptoms of dementia and the last two being home hospice. I was also a secondary caregiver for my MIL, who had frontal temporal dementia for 20+ years.

First I wish you all strength and courage on your journey. It is not easy nor for the faint of heart, but you will find strengths you never knew were inside of you! Challenges will abound and some, or many, will exceed your strengths so do not feel bad when those happen nor expect to be able to 'do it all'.

Many local Alzheimer's Association state and local chapters offer a tracking option or local police offer grey registration for seniors with dementia. If you husband is advancing, his being out and becoming disoriented could be sudden and overwhelming. Does he have a medical alert bracelet so others might know? I do not know your geographic locale, but if it is big city or transient neighborhood, you may want to watch for someone taking advantage of his condition.

It may be worthwhile remembering that as one of our senses becomes compromised others can become more highly acute. This can cause changes in awareness, hearing, etc. during times of physical changes or mental adjustments.

My wife lost her stereo hearing so locating where sound was coming from was an early challenge for her.

While your husband may say things are feeling like a prison, you will need to be a bit of a warden for him. Your knowledge of what is safe and 'doable' will not always match his.

I wish you strength and courage!

Thank you, Scott, for inviting me to join this group. My husband was diagnosed about six years ago and things have deteriorated very fast in the past two years. I am the only caregiver as our only child lives about 3000 miles from us as does her only child. I have a caregiver come in for two hours every morning to get him up and dressed as I have two torn rotator cuffs and can't life him. Then I have someone come in for two hours in the evening to shower him and get him to bed. During the day I am required to get him to the bathroom and table so I can feed him his meals. He is 78 years old, a retired Air Force Officer and it is killing me to see him like this. Plus it is killing me trying to take care of him. I think about taking him back to Assisted Living where he stayed for two months but he was so sad there and expected me to be there at least 8 hours each day. I feel angry, guilty, tired and very depressed but always tell myself that tomorrow will be better. Our neighborhood is lovely but not one of those where you drop in at your neighbor's for coffee. One couple drops by to check on us about once a week but the others may call and say "call me if I can do anything" and I am not the type of person to ask for help. Some days I just don't want to get up and that is very weak and I know that.

Good morning @tntredhead. I hope this finds you having as good a day as the gods allow. First let me say this: YOU ARE NOT WEAK! No how! No way! You are in it everyday! I looked at my caregiving like a prizefight. A new round each day and I just never knew how long the fight would last. Just do your best each day. Some days it may just be answering the bell and being in the ring with whatever amount of energy you can muster. No one of us is Superwoman or Superman. No super powers either. Just fragile, real human beings. It is good to hear you have some AM and PM help! That is awesome!

I am sorry to hear about your rotator cuffs. I developed severe carpel tunnel in both hands from the repetitive lifting of my wife and still have pain and no feeling in my fingers as a result. My orthopedist wants surgery -- I want some time in my life right now with no patients, even if it is me this time so I rationalize putting it off. I hope perhaps your GP can give you some advice on how to lift, transfer, etc. without doing any additional damage.

We, too, were isolated by my wife's disease. That was a very challenging aspect of the caregiving for me as I am a very social fellow. Our neighborhood is nice, but it is made up of about 80% second, vacation homes, so neighbors came for vacation, not to help out even if they had been inclined, which they weren't 🙂 The reality of caregiving is certainly no Lifetime movie, that is for sure!

I send you strength, peace, and courage -- and remember sometimes courage is simply taking on our 'fight' for our loved one the next day!

@IndianScott. Thanks for the encouraging words. It seems you have been where I am now and I appreciate knowing that I am not the loser I sometimes think I am. But today was a good day. I took 90 minutes out tonight, hired a givegiver for a longer period of time and spent those few minutes with 12 great female friends working on a project for others. It made me feel so good to be able to have a conversation about mundane things - not about the problems I face everyday. Now I think I have the courage to face tomorrow and whatever it brings. I loved your statement that courage is simpler taking on our "fight" for our loved one the next day. You are so right. One question though - did your wife get upset when you took a few minutes for yourself? My hubby tries not to show it but I always pay them price the next day.

Good morning @tntredhead. YES, always! Earlier in her disease I had a job and while she understood my being away for that, she did not take well to any other absence. Then after I was fired by a new boss who didn't want an employee who 'had split allegiances', she became much more so. She wanted me in her sight all the time! ALL the time.

Part of this, I was told by her neuro-oncologist was very common with brain cancer/TBI patients in that they often lose their ability to comprehend the concept of multi-tasking. My wife would get upset whenever I would simply glance at my phone, or the newspaper. Our home went the last 9 years of her illness with never having a TV or radio on. She would get upset with me if I even mentioned 'I have a phone call to make tomorrow' or 'we are out of XYZ and I have to run to the grocery tomorrow when the aide is here',

I just kept telling myself it was the disease, not her, angry with me, but again as her neuro doc said to me 'patients often lash out most at those they trust, love, and need the most in their care. Their fears just take over.'

Peace and courage -- and if you are up North anywhere ---- STAY WARM! We are at -8 here this morning!

Courage to all of us caring for dementia patients. I try to look at the good things and take each day as it comes. I am fairly new at this since my husband was diagnosed with Alzheimer's Disease with vascular dementia in late July, although I had noticed things for the past few years. One of the most irritating problems is his jealousy. He gets really upset when the neighbor (a man or his son) brings the garbage can in from the road or bring s the daily newspaper from the dropbox to the front door or any man shows any attention to me. Then he insinuates that they are trying to "come on" to me. I feel badly about this as I can not thank them for their help when they are just being neighborly.

My husband has always noticed the "ladies" and been a big hugger. I have laughingly gone along with his comments through the years since it has all been in fun, and I would reply "He can look but not touch." We have been married 62 years this month and that is just the way he is. But now he insinuates that I would have an affair if given the opportunity. I know it is the disease, but it hurts to have him make these comments to me.

We're looking forward to Christmas with our family and a Merry Christmas to everyone. I enjoy reading these messages.

This is what I do with my husband too, walks, rides and out for coffee as he too never had any other interests that he can do now. I like to shop, (mostly just to look) so we go "to the store", any store, such as the grocery store, and he follows me around, sort of looks at merchandise with me but not sure how much he takes in. Luckily he has no other health issues.

I think it is AZT-100, his doctor approved him for the program, she said he's still youngish and has no other health issues. However, she indicated there is more than one possible drug and they will tailor it to him. So we are waiting for a call from the clinic to find out. I will let you know.