It's another day

nancyj194

I joined this group over four years ago after finally having a diagnosis. The support on here I felt would be so helpful.  I've not gone back and read my posts, but right out of the gate, I posted about going to an Elder Attorney for medical and durable power of attorney. My husband and I married in 1965. I was one month past being a teenager and he was 26.   Anyway, someone quickly attacked what I had done getting the POA because my husband was showing signs of dementia. I was hurt, embarrassed, and shocked at what was being said to me, so I deleted the post and became guarded and mostly silent. My husband was quite aware of what he was signing and at one point wanted me to take his name off of our home, which I did not do. 

Anyway, my take is if someone can't say something nice, or be pleasant or  supportive, then don't say anything at all. I am all for suggestions and helpful comments, but my life has been so stressful for so many years, I just need understanding. For everyone who has been kind and understanding, thank you!

Where am I at today. My husband is 81 and was diagnosed with Alzheimer's by a neurologist at  University Health Science  Center after getting a long awaited referral from our PCP.  I forget the  year, but think it was around seven years ago. 

I was relieved to get the diagnosis and yet, I was sad.  The days go by and  I have handled everything quite okay.  He is at mid stage and I am his sole caregiver.  There are so many things he can not do, but he still dresses himself, brushes his teeth, showers, though somewhat infrequently. I don't push this, but I do make sure he uses the wash cloth daily. No, I don't watch, but I do have a good sense of smell. ha 

In 2013 he had a bad car wreck after he got lost trying to find Sears. He grew up here and knew the area so very well, but then he started forgetting and getting lost. Anyway, by some miracle the accident was not his fault. He sustained a somewhat severe foot injury and so require two surgeries and was confined to a wheel chair for six months.  It was all a blessing, as he no longer could drive. I had tried to get him to stop but he just became angry and yelled and kept driving. He said I had memory problems and he did not. 

After he was released to drive by his foot surgeon, our son told his dad that he could no longer drive. There was some argument and bargaining, but he never drove again. I was happy because all of my married life, riding in the car with my husband was always terrifying. We had been in several accidents over the years and each and every time we went in the car, he was yelling and honking at other drivers. He tail gaited, he raced a train to beat it across the track, he passed a long line of cars going down the mountain because they were going to slow. Only by the grace of God did our little family survive.  

I am happy to be driving and he no longer yells at how I drive.  I am blessed. 

My health has taken a hit over the last year or so. I have osteoarthritis and bone spurs in both knees. In home physical therapy helped the left knee which had been incredibly painful, but after having De quervain's release surgery on my right hand, my right knee has become painful. I had stopped doing my daily walks during the wrist recovery because I was on prescription pain meds, so perhaps that is the reason the pain came.  I still do PT myself for my knees, but so far the pain remains. I go back to the rheumatologist next month, so hopefully she has some ideas. 

I also do not sleep much. I average 3-4 hours a night going up to 6-7 hours every month or more and then back down. Stressful things take me down to 1-2 hours. A well meaning psychiatrist put me on a benzo drug and Ambien for insomnia in the late 1990s when I went for marriage counseling and shared with the counselor I was having difficulty sleeping. I tried over the years to get off of the meds, but would stop sleeping, so continued. She never warmed me about the damage the drug was doing to my brain receptors and there was not the information on the internet available like there is now, so I became sicker and sicker not knowing it was the medication I was taking. I felt like I was dying and told my PCP. His reply was that must feel awful. I had dizzy spells while lying in bed, I woke up one morning with transient global amnesia. When things began to come back, I was in a hospital bed with my husband and daughter at my side. I recovered, but knew I had to get off of the drug. The year before I stopped taking Ambien quite by accident. Going off of clonazepam took the better part of a year of slow tapering after finding an amazing support group on the internet.  I am currently three years off of clonazepam and five years off of Ambien. I am on no other medications.  

I work hard to keep everything going smoothly. My husband is OCD loves to "clean up" the kitchen and fold the clothes. Sometimes I find dirty dishes and silverware in the cupboards and drawers, but I can handle that.  I also have a puzzle table set up and he enjoys working the puzzle with some help from me. He really is quite good.  We are down from 500 pieces to 300. I cook, clean,  pay  all of the bills, have our car serviced, make and take him to doctor appointments, pretty much everything that needs to be done. Our son installed back yard gate alarms, as my husband would leave the gates open and our aging cairn terrier would wander off. When I would go looking for her and our son would come to help, my husband's comment would be why is Brian here, the dog is gone. This man loves that dog, but never, ever showed any emotion when the dog would come up missing. One time in a restaurant a waiter fell and my husband clapped. I was shocked. 

My husband has never enjoyed walking, so he so far has never wandered off.

 I know one day I will need help if I am to survive this. We do have long term care insurance which has skyrocketed in cost this year and changes were required. I discovered that there was no coverage for in home care, so I will switch that. I guess this is a blessing sort of, as I am able to change this over.  My husband took an early retirement in 1999,  as he was showing symptoms then. Our son said it was his age, but I just felt it was beyond that.  Things continued to grow worse, our PCP ignored my request for some sort of a test, until it became so bad, the doctor couldn't miss that something was terribly wrong and we were referred to the neurologist who specialized in Alzheimer's and dementia.  

Well enough of a long story. Some days I need help and guidance, some days I don't. My biggest worry is how long this will last,  will I have enough money left, and will I survive. 

Take care.

David J

Nancy-

Glad you decided to post again. It sounds like you have things under control, all things considered. I’m sure there are days when it doesn’t feel like you do, but I hope those days are few and far between. You are lucky to have your son and daughter near by to help. When you switch over your long term care insurance to include in-home care, I’m sure it will be a great relief for you.

I’m sorry you had a bad experience when you posted before. I have found that most people on here are kind and understanding, good traits for a caregiver. People are also honest and straightforward and sometimes very direct.  My belief it is all with the best intentions. I admit sometimes some comments seem hurtful and I try to dismiss those. Thick skin comes in handy.  

I hope you decide to participate more; it sounds like you have great experience to share and advice to give. 

Welcome back!

Dave

Ed1937

Nancy, I understand what you mean when you say being ridiculed for seeing a CELA. We also saw a CELA after diagnosis, but my wife, like your husband, was fully aware of what she was signing, and what it meant. I have seen others ridiculed for that in another forum, but I never was. I have not seen it here.

It sounds like you are doing a great job of keeping everything all together. We all know how hard it can be. 

You should have no problem getting to know others here, and I doubt very much if you will be treated badly. So welcome back!

clarkfla

Hi, Nancy, My name is Laura. We are in the same boat, mostly. I am 67 and hubby is 73. He has mixed dementia with Alzheimers. I get so frustrated even with in home health care. I could never do this alone. I felt guilty taking out the Power of Attorney over him, so I also have a daughter that has POA. 

Sometimes I feel alone in this battle, but I know I'm not. Take care, and hang in there. We will get through it.

clarkfla

Allow me to introduce myself. My screen name is Clarkfla. I was posting elsewhere, until I learned where I need to post...not in a chat room!

I am 67 and hubby is 73. In 2013 I knew something was wrong as his memory was so short. My daughter said "maybe he doesn't want to remember!" which hurt me terribly. It wasn't until 2015 when we moved closer to our children that we found a doctor that did not believe in giving meds for this horrible disease. We did not get a "diagnosis" for what type of dementia hubby had. They gave us Aricept which he could not handle, and ended up on Rivastigmine. He hated it. But at least my daughter realized how wrong she was. No, she never apologized.

In 2017 we moved to Washington state. Oregon does not have enough resources nor as good as Washington does. We found a neurologist and had MRI done. Now, we have a good diagnosis. Mixed dementia with Alzheimers. He had apparently had some TIA's without our knowledge. The neurologist said early onset mild cognitive impairment. I live with him, and I feel he was further along than what we were told. 

Hubby cannot cook, drive, make plans, make decisions, take his meds without being told, take showers and change clothes without being told, and now his memory is so bad he cannot remember his daughter's name even though he knows she is his daughter. He dreams and believes that is his reality. He tries to make popcorn in the microwave, but cannot understand how to operate the machine. If he is watching television he cannot tell you what he is watching, what it's about, even if it's a football game. 

I feel that he is closer to a stage 5/6 out of 7 and I am in the process of trying to find a facility we can afford. He is a veteran, so I am including the VA in this search. I feel guilty doing this, as he gets very upset when I try to talk to him about it. Do I tell him the truth? Or do I just move him with out telling him? He can feed himself, but can't fix the food. He doesn't soil his briefs, but sometimes it gets close. Anyone have supreme knowledge? I don't...I am stumped. 

nancyj194

Thank you all for your thoughtful, caring replies. I almost didn't come back, as I didn't know what kind of responses I would get. 

I re-read my post and noticed some typos,  incomplete comments, etc., which didn't seem to matter with your responses back to me. Thanks!

David, I will get the in home care. for sure. Thanks! I will also remember to put on a thick skin. Life is too short to sweat what really does not matter in the end.  I do want honest, helpful comments. 

Ed, when I started going to an Alzheimer's/dementia support group at our church, there were many comments around the table about getting medical and durable powers of attorney as soon as possible. That is what led me to an attorney suggested by the group. I am so glad I did it because have shared this with his doctors when they ask.  Thanks for sharing.

Laura, thank you for your response, also. I am sorry you are going through this, also.  When I used to go to the group support meetings, many of them talked about the side effects of the drugs their loved one had been put on.  When the neurologist recommended a drug, my husband flatly refused. I didn't push it because of some of the side effects the group had shared in our discussions.  My husband is on enough drugs without adding more to the mix. 

Even though you daughter did not apologize, I hope she can be helpful in other ways. Our son is so much more supportive than our daughter ever was.  

Speaking of TIAs, my husband has had numerous ones that last no more than a minute or so.  They are over quickly and he is back to normal again.  My son and I  in the presence of my husband, had a discussion with the neurologist about the TIAs. Should he be transported to the hospital each time he has one or do I see if he goes back to normal quickly. We agreed that if he did not recover quickly, I would call 911. Putting him in the hospital would not be good for him at the point. Probably it never will be, but as long as he is back to himself in a minute or two, I will not have him transported.  

I believe we know best how far along our spouses disease is progressing . Our husbands sound quite similar with the stage that they are in.  Actually as I read down your list, we are almost exactly on target. I think he still knows our daughter's name, but he may not, as he never says it. He does our son.  The dreams your husband has are interesting in that he thinks they are reality.  My husband has always said he does not remember dreaming, even from when we were young. 

When our son and I went to visit a nursing home/memory care facility several years ago, I never mentioned this to my husband. I was too tearful at what I saw and knew he wasn't ready for being in a facility, yet.  Should you tell  him? I don't know. Perhaps there are some on here who have been through it can offer some thoughts.  

Nancy

aod326

Dear Clarkfa.  You'll find lots of ideas here about how to deal with placing your husband without arousing his concern or unhappiness. The short answer is "no", don't tell him. You'll see lots of ideas, such as saying you need to vacate your house because it needs repair, or some such. When I placed DH, back in August, I had quite an elaborate plan so that we could move furniture without him noticing. Then I took him to the front door and told him he was there to get help with his words.  I didn't tell him he was staying for good. It was very hard for me, but not for him.

Good luck. And Nancy, glad you're trying again! 

Gig Harbor

Hi Laura,

Your husband sounds farther along than my husband but not by much. I have heard good things about Retsil in Port Orchard for care. Two of my friends who placed their husbands (not in Retsil)  initially told them that because they themselves needed surgery and would be in the hospital they had found a very nice place for them to stay. Neither husband ever came back home and both settled in well. The staff had them stay away for a week but both spoke on the phone daily with their spouses. Each man enjoyed walking and seemed to like the long hallways and each time they turned the corner it was a “new” place. One actually made friends at his facility. As soon as they placed them they each realized that they should/could have done it sooner. It was probably the most difficult decision each had ever had to make.

nancyj194

We had our 2nd covid vaccinations on Monday. All went well. DH didn't even have a sore arm, which I did.  I am glad that is behind us.  

A deep freeze has settled over us. The snow has not made it over the mountains, so at least we can get out and about when we need to. 

nancyj194

Yesterday afternoon, DH was sitting in his recliner and went to get up. He half stood, then staggered forward a couple of steps and fell over. I was on the phone with our son, so put that down and rushed to help him. He tried to get up, but could not, a few times. He's a small man, as he has lost a few inches in his height and weighs less than 120 pounds. Still dead weight, but I was able to help him back into his recliner. Not long after, he did stand up and walked into the kitchen without any problems. He said he thought he was dizzy when I asked what had happened. Not sure if he was or he just thought that.  

Anyway, he was less active the rest of the day and evening.  Today he is back to his usual OCD self.  

This happened a little over a year ago, but not since. Anyone familiar with this and their LOs?

nancyj194

I started having knee problems a little over a year ago.  After going to my pcp and then a rheumatologist, who gave me a cortisone shot and pulled some fluid out of my knee, things improved dramatically.  I asked to have PT in my home, as leaving DH was not an option.  A year later, the good knee started hurting and got to the point I could barley walk. I have been an active person all of my life, walking and jogging the neighborhood 90 minutes every day. 

 Every year I would do the BolderBoulder 10K. 

As DH moved along with Alzheimer's, I gradually stopped doing what I used to do.

Then came the covid pandemic and here I am, mostly at home, doing 30 minute walks around the house every day.  The new knee pain brought that to a stop, but the shot allowed me to walk for 15 minutes some days.  This morning I walked for 25 mins. This is as good as it is going to get. Beings they do knee replacement surgery as an outpatient, I can do this! 

If anyone has had the surgery or can share with me any thoughts on this,  I would appreciate hearing from you.  

Cynbar

I had a hip that started acting up in 2019. It got worse quickly as the months went by, before long I needed a cane, and then it became hard to walk even with that. My DH was probably early stage 6 then, plus we had a diabetic dog --- I said for months there was no way I could manage surgery and recuperation, so I put it off. Finally, by late summer, I was so limited and in so much pain that I couldn't avoid it any longer. Thank goodness I did, everything went fine and I now have my life back, I walk normally with no pain, no cane. In my case, I did arrange for DH to go to respite for 2 weeks. My daughter came from Chicago for a week to help me, and my doctor gave me the OK to drive at 2 weeks. After that, I used the cane for several weeks but was able to do almost everything like shopping, laundry. DH did great at respite in a local memory care facility, and the bonus was that I learned a lot while researching our options. Joint replacement surgery is really a game change for so many people, I only wish I had done it sooner (rehab for me was longer because my muscles were so out of whack, but I got back to 100%.)

Ed1937

Cynbar, I had a hip replacement, I think in 2015 or 2016. Mine went much like what you describe. Doctor wanted to try injections first, but they don't last very long. I told him to just do the surgery. It went very well, and I swore I'd do it again with no thoughts otherwise.

harshedbuzz

nancyj194 wrote:

BTDT. I am sorry your knee is causing you pain.

The new knee pain brought that to a stop, but the shot allowed me to walk for 15 minutes some days.  This morning I walked for 25 mins. This is as good as it is going to get.

Do you know if the damage is bone-on-bone at this point? I had bone-on-bone in my right knee and the shots were useless; I got no relief from either cortisone or synthetic synovial fluid injections. Walking any distance was too painful which sucked because walking in the local park was my physical exercise and emotional self-care when my dad had dementia. 

Getting the surgery covered generally includes looking at how the joint is damaged and how it is impacting your life. Does the knee pain limit your ability to complete tasks in your daily life- can you get in and out of a car, get in and out of the shower, stand to prepare meals, etc?

Beings they do knee replacement surgery as an outpatient, I can do this! 

With all due respect to the previous posters, hip replacement and TKR are two different animals.

My surgery was done outpatient but I still slept over at the specialty hospital where the surgery was performed and was home the next day around noon. Not all people will qualify for outpatient TKR; I was 61 and otherwise fairly healthy. My mom (81) and uncle (75) were both inpatient for 2 nights with the same surgeon. He was at the specialty hospital and she got turfed to the university affiliated downtown hospital.

Dad was in late middle/late stage dementia at home when mom had her knee replaced. It was necessary for us to bring in HHAs in addition to me preparing meals, cleaning and driving. She had a very straightforward recovery and needed help for about 6 weeks. My recovery was a little more complicated by reactions to the medications I was prescribed after so I wasn't really out and about until closer to 10 weeks.

That said, she was distracted and not always able to complete her PT. Dad often "needed" something as soon as the PT came. As a result, her knee does not function as well as the one she'd had replaced a few years prior. You need to be able to commit to the PT.  

If anyone has had the surgery or can share with me any thoughts on this,  I would appreciate hearing from you.  

When my mom had her first knee done, she went to an inpatient rehab that was affiliated with the specialty hospital for a little over a week. Dad was still OK at home then. In retrospect, I wish I had made arrangements for one of them to go to rehab so that she could do the work she needed to do to heal. 

Another piece to this that people don't always share is that an artificial knee is not the same as the healthy one you were born with. The range of motion is limited. And you may find you can't kneel on it comfortably or at all. I find gardening, cutting out fabric for sewing and  yoga practice a real challenge at times. And sometimes, especially when the weather is changeable, the joint aches. That said, until my left knee started acting up, I could walk on it for a couple hours which was terrific. I have another TKR in my future, but I'm not quite ready yet.

Good luck.

HB

Ed1937

harshedbuzz wrote:

With all due respect to the previous posters, hip replacement and TKR are two different animals.

Absolutely! I was not comparing the surgeries. Only the likely outcome (pain free movement).

nancyj194

Thank you all for your replies and input! That said, I will wait to see what the doctor tells me on the march 4th.

I was/am diligent about doing PT at home. It was such a welcome option, I was determined to keep up with it. I still do it mostly every other day, but the results are not the same, as the pain never goes away or even gets less.  

When I had the x-ray a year ago, it did not show bone on bone, just osteoarthritis and bone spurs in both knees. That could have changed in the last 12 months. 

Before the shot, I was using my husband's walker and cane that he no longer needs. I had a metal folding chair in the shower to sit on and a chair in front the bathroom mirror to sit on while I dried and fixed my hair/brushed my teeth, etc.  Meals was another issue, but I did have some left overs and stuff in the freezer. 

Our neighbor who is six years older than me had a knee replaced four years ago,, did spend a night or two in the hospital, but came home and followed up with PT. He was out mowing the lawn two weeks later.  

The proceedure today is typically much less invasive.  My future DIL is a nurse and said that the knee replacement surgeries in the hospital where she works are done as an outpatient, complications aside.  

My health is quite good.  I am on no medications because my blood tests always come back normal.  My mom is 101, lives on the farm alone, where I grew up and had a license to drive until she broke her hip at 99. She recovered from that, spent 3 months in rehab and returned home. She missed the window to have her license renewed, so she no longer drives. The only medication Mother is on is for her thyroid. 

There is so much to consider with DH will this is all going on.  

Thanks again.

Ed1937

Nancy, I was told that if I did PT exercises before surgery, it would make it easier for recovery. I believe that. It can strengthen muscles that can help. Best of luck to you.

nancyj194

Ed, thanks! I am continuing my PT exercises. My appointment is this Thursday 3/4.

On another note, I have a question about diagnosis:

I do have a question/thought about when the diagnosis was made for others and how long before the official diagnosis was made did you know there was something terribly wrong?

My DH retired at 60 because he could no longer do his drafting at work CAD. He was an engineer.  I just attributed it to the fact he was not a "computer person."  After retirement, I observed him leaving to go somewhere in the car and head the wrong direction. If I was with him, I always reminded him where we were going.  More than once, if he was not sure where he was going, he would literally slam on the breaks on a busy, well travelled street. I would say, DON'T STOP HERE! PULL INTO A PARKING LOT! Cars would zoom around his honking their horns.  How we didn't get rear ended, I'll never know.

Then our son came over to help his dad put up a new lawn shed and shortly after they went out side to commence "construction" our son came in and said I needed to come help as his dad had no short term memory.  Ahhh..finally our son realized something was terribly wrong.  

Everytime I said something to our son about his dad's memory, he would say it was just Dad's age.  I knew it was not, but didn't want to press the issue. 

So, DH has been close to 20 years with the above symptoms. I tried and tried to get our PCP to give DH a memory test in the office and it never happened. At the time, DH would get angry and deny there was anything wrong with his memory. When the long time PCP did finally notice something was wrong, it was so obvious, he could not miss it.  

Do the prior years before diagnosis not count for Alzheimer's stages? 

Thanks

David J

Nancy, there are many on the boards who’s LO wasn’t diagnosed until long after symptoms started. My DW is one of those with a late DX. She was a lawyer, and her employer knew something wasn’t right and let her retire on disability. We had no problem getting a neurologist to say she could no longer work, but diagnosis took over ten years. By then, DW was clearly late stage 6.  As for earlier stages “counting” the certainly do!  Not sure what they count for or towards, but they do!

BTW, when you change the subject in the middle of a thread, fewer people will see it than if you start a new topic. 

nancyj194

David, thanks for the comment and the heads up concerning changing the topic. Beings you responded, I won't re-post this one, but will in the future.

I am sorry it took 10 years for your DW's diagnosis. Had you been aware something was going on before she retired on disability?

Sometimes I have read comments on here, concerning when their LOs were diagnosed, and it seems like not much was considered before it was on paper from a neurologist. Indeed, the disease does count and add up well before the diagnosis  becomes official. I have noticed things commonly said on here, are in reference to after the diagnosis.  I suppose for many that is a starting point. For me it was more if an ending point. I remember after our appointment at University Health Science Center, our son, my husband, and I sat down for lunch and I cried, even though I had known years before the neurologist's diagnosis. On that day, it had become a reality.