Just venting

Geot · April 13

Yesterday I needed to refill a couple propane tanks for my grill so I took my DW with me not wanting to leave her alone at home. She was identifying me as her father all day and said "oh that would be good being my husband wanted to do that". While we were at the store having the tanks filled she was sitting in the car watching. After I got into the car she said "you know while I was watching you dad you looked just like my husband". Later in the day she did switch back to recognizing as her husband and said " make sure you pay my father back for filling up those tanks"…..I just said ok I will. It never stops amazing me just what is going on in her head but thanks to many here I am learning….but most of all being able to cope with it much better.

Thank you to everyone here

Jeff H · April 14

It's a terrible disease. There are so many corners to manage and anticipate a proper response. Today was a great day with my DW. We went out for breakfast. Everything was fine. My DW was laughing with me at things gone by. I took her to the Walmart pickup area around 4pm to gather more food items. My DW then started in on "where is the money", "who is paying for this?". It subsided after about 30 minutes, and everything was fine until she went to bed.

howhale · April 14

https://alzconnected.org/discussion/comment/270247#Comment_270247

Your simple reply of "ok" was right on. Simple, easy for our loved one to understand, not contradicting them or explaining to them, just going with them to their okay place. Over time we all learn from each other in order to survive and, even more so, provide the best loving care for our loved one. It took me a while to realize my mission was simple, keep my DW safe and eliminate as much as possible that caused her anxiety, confusion, stress. Simple mission and so very hard to do. One of our doctors, in whom we both had the utmost trust, told me a simple truth as he realized my stress at trying to do the "right" things and failing. He said, we cannot save her, we know the outcome, we have to give up all our standards of proper living to make her as happy as we can. He said it is as simple as, if she wants to eat ice cream for breakfast, give her ice cream. That stuck with me and helped me learn to give up our standards and meet her new ones where she is. He said that for those who argue that it is wrong, or that I am harming her or shortening her life, remember they are not walking in your shoes watching her slip away minute by minute. Making her miserable trying to do the "right" things to extend her life for whom, them? Surely not her.

Geot · April 14

howhale Thank you for those words of wisdom you are so correct. I do give my DW whatever she wants to eat at any time she wants it whatever it is, healthy or not.

ronda b · April 14

https://alzconnected.org/discussion/comment/270322#Comment_270322

Thank you. Had to take DH to vascular surgery today. They suggested he have another surgery to both his legs. Dh couldn't even tell them how they felt. I try not to answer all the questions, but I stepped in and said he has dementia. That changed alot of the dr. Suggestions. I explained he had alz and vascular dementia. I knew what surgery could do to him , aleast 6 hrs under and a 7 day stay in hospital., . He agreed with me so we are not doing the surgery right now. He does all his adls right now and still has bilateral pulses in his ft. . I just can't see putting him through this. I hope I'm right.

https://alzconnected.org/discussion/comment/270322#Comment_270322

howhale · April 14

https://alzconnected.org/discussion/comment/270341#Comment_270341

So glad you stepped in to update the doctor. Many, when given the diagnosis of AD, will respect the patient's needs and comfort. When my DW began to refuse to attend even regular follow-up doctor appointments our cardiologist on a phone telehealth call told me it was time to bring in hospice for her benefit. I respected his input so much as hard as it was to hear it. Enjoy the time you have with your DH while he can. The decisions we are expected to make as the care giver and responsible party are immense, hard and always subject to our questioning ourselves. But, never, never, ever allow anyone else's opinion influence your decisions. We are all questioned by others for those decisions we have to make but you have all the facts and knowledge, they do not. Stay strong, trust your heart and mind, use input from knowledgeable sources but make the best decision for your loved one and know you did the right thing.

Geot · April 15

I am very lucky to have all my DW doctors, neurologists, PCP and others follow her progress on a hospital portal. I can post her progress, ask any questions I have, and all her doctors have access to this information, so it makes it a lot easier at her appointments. I do however sit in on all of her appointments as I'm sure most everyone else does to make sure any medical situations are addressed, DW will sometimes try to play them down or just simply forget about them, not sure which.

howhale · April 15

I found it very interesting watching my DW "perform" for visitors. She always suffered anosognosia and would muster all her strength for an hour or so with visitors. Once we were alone again, she would collapse. If they stayed too long she would become more and more withdrawn until I invited them to leave or they realized it. This left them for a long time questioning my assessment of her condition. As she got to the last stages, she could no longer "perform" and they saw the truth.

Grenah · April 15

We have had some sort of funny yet serious issues. The house is basically one floor. There is a basement with the washer/dryer and an attic. She periodically wants to go to either one or the other. The basement stairs only have one handrail and is tricky. The attic is a dark, scary staircase with the treads coming off. She was sure she had left a mess on her desk and later wanted tea up in the attic. My sister tells her the house is on one floor and there is nothing else but she knows there is more as she has seen people go up or down, especially the basement. I keep assuring her that the attic staircase is dark and the only thing up there is dust and stuff. She was looking for a way in on an upper floor from the neighbor's house. I can usually talk her out of it by showing her her room, etc. The access from next door was rather creative. It is not an attached house and there are lawns and driveways between houses. It was a very stressful debate.

Thanks for listening

Geot · April 16

howhale..This is so true…my DW somehow can act so different when we have visitors and even when talking on the phone although she does make many mistakes talking about time and places. Also, after about an hour or so I can see the mood swing and I know it is time for the visitor to leave. Sometimes the visitor will say she seems to be doing very well but they have no idea what it is on a 24/7 basis.

howhale · April 16

https://alzconnected.org/discussion/comment/270454#Comment_270454

I think that is what makes this disease so confusing and difficult for all involved. The patient, I believe, has some sense of something amiss and changing but is unable to control it or resist it, the spouse or primary caregiver knows all and sees all that is taking place minute by minute and everyone else has but a peek, often carefully managed, of what is really going on. Some have said that we live with their death every minute of every day as we lose them piece by piece and yet there is no time to grieve each loss. There is more work to be done to care for them. Others love them and care for them but, often or maybe usually, on a visit to visit basis. When it is over, it opens our door to grieve finally and we have a lot of it to get through. Enjoy every second while you can, forget the hard work, the frustration, the tough moments and just love them. Easy to say and hard to do, but try, because once it is done, we cannot go back. There are no do overs. You are each one a saint, a hero, a miracle worker in providing care for your loved one being lost to this horrible disease.

Geot · April 17

This disease has so many different faces to it that it is mind boggling at times. My DW at times can remember things from a few days ago but in the next moment she can't remember anything from just a few minutes that was said or happened. She sometimes can put clothes in the washer and other times cannot remember the wash machine or dryer settings and needs help. It seems to switch off and on light a light switch.

Geot · April 20

It seems the afternoons are not a good time of day for my DW. She often thinks other people are in the house and starts whispering to me so they cannot hear her. She ask me last night if I have any sisters or brothers and how long have I lived here…. breaks my heart that she has lost all memory of this. Then on the other hand she can come up with a memory of a person's name that I could not recall. Well at least the last few days she has recognized me as her husband and not her father.

Just venting again

howhale · April 21

https://alzconnected.org/discussion/comment/270765#Comment_270765

It is so sad when our loved one has lost near term memory and cannot recall our name or relationship to them. Recalling longer term memories and substituting them for current day happened a lot. Just have to go with it. Having said that, I still could see that my DW knew I was supposed to be there with her and trusted me and deep inside still loved me. Went through the other people in the house a long time. Reflections in door glass, windows, mirrors of herself, me or others triggered it for my DW and there was no explaining that it was just us. I finally bought coverings to put over all windows, sliding glass doors, etc. to eliminate as many reflections as possible and yet still allow light. It helped reduce her anxiety a lot.

Geot · April 21

My DW woke up this morning with her radio on and ask me if my radio came on as well and was totally confused as to why. She asks me to check it out and I saw that she had somehow set the alarm so I just said no worries the alarm was on so I will fix it for you. She said, "oh no, don't touch it I think it is the doctor who did it so let's wait to see". I said ok and just fixed it when she left the room. Anything now with buttons on it has become a challenge for her. I guess at some point I will have to remove some of these items but I hate to do that.

howhale · April 21

https://alzconnected.org/discussion/comment/270857#Comment_270857

The loss comes in pieces day by day, never knowing what will be next just that it will be something. No doubt why the grief after is so long and difficult. The spose or close family care giver has endured countless losses over years and is often unable to show their grief in the best interest of their loved one. And then afterwards it comes and seems as if it will never stop. Stay strong for your DW, just try to go along with her in her confusion and then come here to let it out. With this disease the war is lost at the outset and the best we can do is try to win some of the minute to minute, hour to hour and day to day battles to protect her as long as we can. I ended up with child locks on cabinets and drawers, removal of anything with which she could injure herself, hiding remotes and devices she no longer could operate but were needed still and on and on. You might think there would be some sort of relief afterwards to return everything back to normal but, for me, there was no relief, joy or satisfaction. Just another part of the sadness.

Geot · April 22

howhale…Thank you for all the insight…I totally appreciate every word and it helps me cope and prepare for which is yet to come. Family and friends offer all kind of advice but they really don't know what it is to live 24/7 with this horrible disease. I really couldn't manage this without people like you and all the others here who have lived it.

Thank you….thank you…thank you

Geot · April 23

My DW started asking me questions yesterday like "how old am I", and "what is my birthdate". She then ask, "do you have any brothers or sisters", also she ask, "how long have we lived here in this house"…I just answered the questions and all she said was "Hmmm". For some reason I think she was just trying to search for some lost memories that just wasn't there anymore.

howhale · April 23

https://alzconnected.org/discussion/comment/271011#Comment_271011

very much similar questions that my DW asked. I truly believe that no matter how for down the path of AD she had advanced, she always remained inside and struggled to be known. Questions from the past seem more associated with her long term memory but trying to bring them current. Like the question about brothers and sisters. My DW knew my brother as long as she knew me but would ask me if I had a brother. I believe that it was a memory lost in there for which she knew she had an answer but could not retrieve it. Kind of like a lost file in a filing cabinet full of files, new and old. When he would visit and sit beside her she was comfortable and would engage somewhat with him reinforcing my beliefs. She did not do that with friends with whom she did not have those long term histories.

Geot · April 27

My DW got up this morning and went downstairs and brought up a bag of potatoes. I ask what's this for and she said "it's Easter today" I told her that Easter had already past and she then said "it has, what did we do for Easter" I told her we went to her brother's that day and she said "we did, I don't remember that". She then started looking for a plastic easter bunny she had for a decoration she had put away weeks ago and was very agitated she could not find it.,,,she finally found it which calmed her down a little. She then moved on with going through greeting cards which she does often with no rhyme or reason.

Just venting again…thanks for listening.

Andi C · April 27

https://alzconnected.org/discussion/comment/270895#Comment_270895

So very true. I had no idea how difficult and lonely being a caregiver was before this all started. And yes, from others posts, I understand it's a long drawn out grief that we all work to hide unless we can manage to find some time for a few tears that won't be seen by our loved one. I've only recently begun this journey and keep learning from others here that have traveled much further than I have. Thanks to all for helping other caregivers with tips, and tricks and most importantly, your insight.

Just venting

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