Questions for carers of early onset. How do you manage?
As you all might noticed from another thread that I started my wife Lucy is showing unmistakable signs of worsening cognitive impairment, and I am suspecting some form of dementia. She has yet to be diagnosed. She is 52.
There are many questions I have regarding how you all managed, especially the husbands and wives of early onset at such a young age. Like me, many of you are not close to retirement; you probably have a full-blown career; your income is probably essential to keep the family afloat; you cannot personally render 24/7 attention. Many of you probably still have dependent children. Your spouse is probably a whole lot more physically active, and physically capable than a more senior sufferer. If your spouse is/was anything like mine, she/he would be in complete denial.
How do/did you all manage? How did you get your loved one into the system (e.g. diagnosed)? How do you take away the car keys, credit cards and related money decisions, etc. from someone who is used to being highly mobile and independent? It seems many support activities are geared toward seniors, and someone in their 50'ies will hardly fit into those social support groups? When that eventuality comes, what kind of additional trauma when you need to place them in a care facility, a 50 year old among 70 - 80 year olds?
Re: Questions for carers of early onset. How do you manage?
Luau, I have no experience for early onset AD, but I have seen many younger people in the nursing home for memory impaired. My FIL who is 91 is in such NH. At times I saw younger people came in. One person who just came 2 years ago like my FIL went to the other wing for sicker patient last year and died! He was so young. It is confidential info. so I have no idea what his diagnosis was. The are 2 other younger ladies with darker hair and they are still fine. Today some home with memory impaired do have younger people. A sad thing I will say.
There are many people here with the experience of early onset AD. Beginning is one. There are a few others as I see more this year.
Re: Questions for carers of early onset. How do you manage?
Hi Luau. Yes, I went through all of the things that you mentioned.
We were lucky that my husband in his 50s was diagnosed early enough to be cooperative. In fact, the diagnosis was almost a relief to him. We immediately went to a top elder lawyer and paid for an hour of advice that was worth its weight in gold. (We then got many of the recommendations like the Powers of Attorney, Wills, Living Wills, deeds etc. done by cheaper lawyers.)
DH had to stop working. I was lucky that I had a job that could keep our family going, but DH qualified for Social Security disability benefits. Our kids ranged in age from 10 to 16 at the time of diagnosis, and each of them also received benefits until they graduated from high school.
I have posted a lot through the years, from the early years when DH was still able to be home alone, to needing day-care, and then to approximately year 8 after diagnosis when he was admitted to a nursing home. I'm sure I've mixed up dates here and there but I've tried to tell the story of our family's experience with early onset, particularly in annual updates.
We tried a support group, but you're correct that the people in the support group were dealing with very different issues for elderly patients. Years later our local Alzheimers' Association did start an early onset group. I was disappointed when I was told that our family was not eligible to participate. They felt that our family was much further along the path of Alzheimers since DH was approaching nursing home stage at the time, so we would be "discouraging" to the other members of the group who were at earlier stages.
We didn't have any other family, so I was on my own. I had to be Super Mom to be strong for my spouse and children, and held down a stressful professional job. My goal for the first few years was to reassure my spouse that the family would be ok, and to reassure the kids that I could handle everything so that their lives wouldn't be overturned overnight.
I've honestly lost track, but I think we're in about year 10 after diagnosis. It's a long time to be married but not married. I still work very long hours, including business travel again now that DH is in a nursing home. Our kids are in grad schools and college, all doing well (one will be taking the bar exam this summer and is looking for a job!). I'm approaching 60, and know that I'm going to have to figure out how to build a life for myself. The loneliness for an Alzheimers' spouse is crushing.
Ultimately, as I look back on the last ten years, I see the journey as having been countless small steps and challenges. I lived with lists in the beginning, trying to accomplish small goals. I eventually realized that this was not an immediate death sentence and that I'd have sufficient time to handle things. I'd adjust to handling a particular stage, and then there'd be a drop-off that would present new challenges. There were awful surprises, like the first time that DH wandered or the time that the guidance counselor called me to pick up a kid who started crying in a class. Each drop-off was heartbreaking. By the time DH was admitted into the NH, I was getting-by on 3-4 hours of sleep since he would pace all night.
Our story is still not over. DH has stopped walking, and continues to slip away. We think he does not recognize us anymore, but it's hard to tell. He still babbles gibberish sometimes, and continues to eat soft foods well (he needs to be fed). The NH staff tells us that he is doing well.
Re: Questions for carers of early onset. How do you manage?
Beginning you are such a treasure to those who have a spouse diagnosed with EOAD. I did want to comment on your support group experience. It astounds me that they didn't want you in the group of EOAD spouses. Too far along and might be discouraging? WOW!!! Your journey holds such valuable experience for others. Thank you for validating the need for all levels to be involved in a support group I won't make that mistake!!
Re: Questions for carers of early onset. How do you manage?
Quote:
Originally Posted by WasFatNoMore
Luau, go to advanced search, put in Beginning's user name and it will bring up all her posts. They are invaluable.
Thank you so much. Except for my screw-ups about dates. I seriously feel like we've been living with this forever, and clearly lose track of the years. My apologies for that - still, I do try to help others to reciprocate for the wonderful people who advised me when I first came here in a panic.
The following 2 users give hugs of support to: Beginning Gabriel (05-05-2012), ninamarc (05-05-2012)
The Following User Says Thank You to Beginning For This Useful Post: Luau (05-06-2012)
Re: Questions for carers of early onset. How do you manage?
Dear Beginning, thank you so very much for responding. I have found your posts chronicaling your "odyssey", and they have been informative, touching, and fascinating. What a roadmap for those of us who might need to be embarking on the same journey. Thank you.
I am a bit preoccupied at the moment, but I thought I should at least acknowledge your response. Later tonight, when I... hopefully... get the current fire under control, I will write more.
Re: Questions for carers of early onset. How do you manage?
Well, here's a brief weekend update. It was hectic, but didn't beat last weekend. It was last weekend when Lucy announced that she was adopting a puppy, and she was going to pick it up. I went off for my usual saturday morning workout, and before you knre it, Lucy called saying she was lost and needed directions. What I thought was a 10 minute trip actually was a 3 ())$&@ hour trek into the next state for this dog, and Lucy was 30 miles turned around on some back country road.
Fast forward to this weekend. Same saturday morning workout. My mobile rang at almost exactly the same time. It was Lucy. Oh oh, I thought, what now. She was frantic because I was not yet home. I reassured her that it was barely 30 minutes ago that I kissed her goodbye and left the house. Ha! Real surprise awaited me when I got home. Lucy decided she needed cosmetic surgery. Had arranged the whole thing and is scheduled to go in this week. somehow I have to convince her that this is a very, very bad idea.
Re: Questions for carers of early onset. How do you manage?
Wow - is there any way of keeping her busy with chores or activities to keep her grounded? Are there family members who can keep an eye on her while you're setting up doctor visits for her? You might try telling her that there's an issue with the medical insurance that needs to go through your other doctor first before she can get plastic surgery....and then get her in for a medical workup asap! You can also try calling the physican's office to explain that she's in the process of a dementia workup, to see if they'll cooperate with you to cancel or postpone the surgery.
There are other things that can cause bizarre behaviors besides AD, and she needs a full work-up. She might have other things going on too, like manic-depressive behavior.
If you haven't done it already, you need to make sure that the legal paperwork (durable power of attorney, health care power of attorney, wills, beneficiaries of life insurance and 401K accounts, etc.) are set up correctly before there's a risk that she might be deemed to be incompetent, just to make your life easier down the road. You'll need to make sure that all of her doctors can talk to you - a tricky proposition sometimes with the privacy laws.
I was fortunate in a way that we had our kids home, who helped to keep DH busy. We got a little dog, which helped at least in the beginning (although I ended up with the dog later in the disease....). I had a lot of chore lists for him. Many of the chores were actually helpful, but some of them were busywork. We got a huge white board in the kitchen with a calendar. I would write the chores as simply as possible on the whiteboard, which he couldn't miss seeing when he was in the kitchen. The goal was to direct that frenetic running around and feeling of being "lost" to speciic, identifable things to accomplish.
And of course, getting her into doctors is critical in case this is something that is treatable. If it's AD, you may want her to start Aricept among other drugs. You'll want to establish her baseline stage. You might need to try behavior modification drugs to calm her down. It's definitely time to start working with a doctor that you trust.
Re: Questions for carers of early onset. How do you manage?
Dear Beginning, I just need a "pause" button on her.
She is not that confused for me to pull any of those tricks. In many ways, her presentation is not exactly like AD. It is like she is regressing into a teen in self control. More and more, it's like she lives only in the present, and does not have a grasp for the future or for more abstract concepts like a bigger picture. You know how kids will say the darndest things, like asking why someone is fat straight to their face, while adults know better and hold their tongue? And sometimes, it is not like she forgets stuff. It is more like since whatever item does not impact her immediately, therefore there is no need to remember. She is living only in the present, and cannot identify that others may feel differently than her.
Had a productive discussion with her primary doc today. Agreed to let him be the bad guy, who will report her to the DMV and yank her drivers license if she does not comply with an MRI to prove she is ok.
Re: Questions for carers of early onset. How do you manage?
Changes in mood and behavior were the first symptoms I noticed with Mom. The Hypocampus of the brain is the first part affected by the plaques and tangles that cause Alzheimer's. It controls inhibition, developing new memories about events experienced, and space (how we relate to what is round us).
Just on an off hand chance... is your wife on steroids? Prednisone in particular? If so when was she diagnosed with type II diabetes? The reason I ask is before Alzheimer's Mom was given Prednisone and had an episode of Prednisone Psychosis. I was similar to dementia in some ways and different in others. It was not the memory but the behavior and lack of inhibition that was the problem. There was absolutely no impulse control and no consideration of others. At the same time she was diagnosed with type II diabetes. Later she had an adrenal reaction to a steroid shot. After the Prednisone was stopped the symptoms abated... including the diabetes. Just a thought..
Re: Questions for carers of early onset. How do you manage?
Dear Deb,
I am not sure what is really going on with her. I just know something is way off kilter, and it is getting worse. Since I am a thinker, I tend to over analyze. Perhaps I should make life easier on myself by just letting events unfold rather than analyze without sufficient information. Her behavior seem to go in spurts, and the past 2 weeks had me running on empty. LOL... I just need that "pause" button on her. I am hoping that we will now have a couple of quiet weeks respite, but not counting on it.
To answer some of your questions, she is not on prednisone or any other steroid hormone supplements. She is 10 yrs past menopause (early onset); fluctuating hormones should not be an issue. She is a type 1 diabetic, which is totally different animal than type 2 with which you are probably more familiar. Type 1 onset is usually juvenile, where your body's immunity attacked and destroyed your own insulin making cells. Lucy's type 1 onset was when she was 12, or 40years ago. Type 1's, or T1's manage normal lives by vigilant diet, careful monitoring of blood glucose, and self administration of insulin. While hypoglycemic episodes are a constant bane of T1s, Lucy has been experiencing hypo episodes alarmingly frequently, and these episodes have been gaining in severity in the past couple of years. I am suspecting that her cognitive issues are beginning to hinder her ability to self-manage her T1. Also there is reason to suspect that there are additional issues that exacerbate or worse, precipitate some of the nastiest hypo episodes. Of course, each really nasty hypo episode involving passing out can't be good for the brain. Lately her alertness and cognitive functions seem to take a step downward after each severe episode. So there are a lot of things going one, and they may all feedback in a very bad way to exacerbate each other.
Re: Questions for carers of early onset. How do you manage?
The behavior problem like Deb said is part of dementia. Of course there may be other conditions that cause the cognition impairment.
Again, if you want to prevent the strange behaviors or stop her goals of cosmetic surgery or washing the dog in the kitchen, you HAVE TO hire some part-time caregiver to watch her. You keep saying you went for exercise and she was alone. Then when you came back, she talked funny.
Please hire a part-time caregiver to be with her for now. At least the normal caregiver can tell you how it happens and the person can talk her inot senses.
Re: Questions for carers of early onset. How do you manage?
Quote:
Originally Posted by ninamarc
The behavior problem like Deb said is part of dementia. Of course there may be other conditions that cause the cognition impairment.
Again, if you want to prevent the strange behaviors or stop her goals of cosmetic surgery or washing the dog in the kitchen, you HAVE TO hire some part-time caregiver to watch her. You keep saying you went for exercise and she was alone. Then when you came back, she talked funny.
Please hire a part-time caregiver to be with her for now. At least the normal caregiver can tell you how it happens and the person can talk her inot senses.
Regards,
Nina
She started talking slower with slightly slurred speech beginning about 2 weeks ago, concomitant with a very severe bout associated with hypoglycemia. She is dismissing the importance of that, of course, but I am insisting that her doctor use these bouts to force her into MRI with the consequence of driving license suspension for non-compliance.
I did have an informal "caregiver" who was my cleaning lady for the last 25 years. She just quit last week, after getting into a heated argument with dear wife, who apparently said something rather nasty and lectured her. The cleaning lady had a lot of problems with her unruly dogs and Lucy's obsession over them. I don't blame her. I have a lot of problems with her unruly dogs as well.
Oh yeah.. primary doc will also notify plastic surgeon, to get him to go ahead with his pre-procedure eval appointment but to delay as long as possible the actual procedure. This will buy us more time. I am now wondering if a plastic surgeon can do a MMSE.
It's been a hell of a last 2 weeks. Sigh. If I am going to have a cognitively impaired wife, why can't I have a docile, happy go lucky, sedate wife? Instead I get this ultra-high maintenance, aggressive, non-stop version that doesn't sit still and gets into more trouble than I can stop.
Re: Questions for carers of early onset. How do you manage?
I think you should be happy that the doctor will go with you. This is good. Now you have some ally.
The only way to make Lucy happy is to validate her feelings.
Yep, I don't blame the cleaning lady. How about you get someone from the home care service? They have people like CNA (nursing aid) or personal caregiver who may be trained for dementia patietns.
Find someone who is professional about this and won't get personal dealing with Lucy.
Re: Questions for carers of early onset. How do you manage?
.........It's been a hell of a last 2 weeks. Sigh. If I am going to have a cognitively impaired wife, why can't I have a docile, happy go lucky, sedate wife? Instead I get this ultra-high maintenance, aggressive, non-stop version that doesn't sit still and gets into more trouble than I can stop.......
I think I have said that every two weeks for the last 6 years.. just substitute Mom for wife. So much of what you have said here brings back memories of that time.
I just mentioned the steroid because it popped in my brain. I do understand the difference between type 1 and type 2 diabetes. I also know the psychosis, elevated sugar levels, and adrenaline responses to steroids are very often overlooked. It was worth a shot, especially since my sleepy brain picked up the wrong diabetes type At least that seems to be ruled out!
If it is one of the many dementia then managing her diabetes is going to be an issue because she is not going to be able to do that herself. That impulse control which stopped her from doing what she wanted to do is diminished. The consequences of what she does will not be clear to her. She will be very much in the moment, within herself, and what she wants. You are right in that they feed off each other in a bad way. Episodes affect cognition and cognition affect episodes.
Good idea to tied the episode two weeks ago to the MRI and doctor visit. She does need to be checked out sooner rather than later. As for the cosmetic surgery... WOW. Anybody can do a MMSE. You can get a copy off the internet and do it yourself. It is nothing more than a series of 30 questions. Each targets a specific cognition. You get one point for each right answer. Normal cognition will usually receive a 30. The lower the score the more impairment present. When Mom and I were back where you are now, I would often ask her to count backwards by 7's. 100, 93.... Just to reassure myself that I was not dreaming all this.
Your tale of the house keeper mimicked Mom's actions as well. When mom was diagnosed we tried the in home care giver for a while. Dad and his Vascular Dementia was a good excuse to bring somebody in to "help Mom out". This was a true angel of a lady with strong references from a trusted friend. Dad adored her but Mom.... Mom didn't want that spy in the house. She didn't want her "snooping" around. The one thing the care giver didn't do was wash windows. She cooked, did laundry, cleaned, took them to the doctor, managed their meds, even shopped for them. Mom insisted that the windows be done sometimes twice a week. But this lady hung in there.... until Mom because extremely verbally abusive and physically abusive as well. Mom even bragged afterwards that she had run the lady off. Then she panicked because nobody was there. It is difficult to introduce a CNA or care giver as such in the stage your Mom is in because she truly doesn't believe she needs anybody or has anything wrong with her. Your best bet is to introduce a person gradually as a friend. Maybe a fellow dog rescue lover who is trained in dementia care?
Knowing that what you are going through is typical behavior doesn't make it easier to go through but maybe it helps understanding her a little better. This disease is a roller coaster of good days when we think we are nuts and bad days when we know something is wrong. There are surprises around every corner because we have no way of predicting what behavior they are going to throw our way next. There is more for them to get into than we could every prevent. We spend our time resolving crisis instead of being proactive because we just can't catch up with them.
Don't every stop over thinking. It will serve you well. As you learn more and more about this disease and what to expect you will become more adapt at predicting what will happen next and what your wife needs. You will know her like a well read book. When someone mentions a scenario you will know instinctively the validity of what they suggest. It also allows you to think outside of the box to coordinate all aspects and not just get stuck on one line of thought. I have been accused of over thinking and admit to it freely. But in this case I don't think you can over think
Re: Questions for carers of early onset. How do you manage?
Quote:
Originally Posted by Gabriel
......... There is more for them to get into than we could every prevent. We spend our time resolving crisis instead of being proactive because we just can't catch up with them. .....
Isn't that the truth! The great news this afternoon is, after spending an hour on the phone with the housekeeper, she has agreed to stay. Now all I have to do when I get home tonight is to talk some sense into that wife of mine.... or at least convince her to keep her dogs confined while the housekeeper is around so she can clean efficiently.
Re: Questions for carers of early onset. How do you manage?
Luau... word of warning to prevent frustration on your part. If it is dementia you can not talk sense into that wife of yours. It is impossible. It is not her choice but a function of the disease you suspect that she has. Just a suggestion but perhaps she can go into a room that she enjoys with the dogs. Perhaps a study with her computer or her bedroom. Let the cleaning lady do everything else but that one room. Next time the house keeper is there pick another room. It's along shot but it might work. Just make sure the house keeper understand what you suspect and perhaps help the house keeper find ways to work with her. Yep, you have your work cut out for you!! Have you heard anything from the doctor or lawyer yet?
Re: Questions for carers of early onset. How do you manage?
Luau
Something told me I needed to check in on HB today. I have been EXACTLY where you are.
First, let me tell you that you WILL make it thru and there is a light at the end of that tunnel.
Like you, my wife was diagnosed with dementia (Pick's Dementia) when she was 52 - I was 51. That was almost 5 years ago. Her disease progressed quickly and was placed in a nursing home a year later. She passed away 3 years ago this past March.
I've not read thru all the other posts yet, so if I repeat some things, please forgive. I'll go back and read thru later, but I felt I needed to respond directly to you now. If there are things I don't think to say, please post and ask what you need to know.
First of all,get an elder attorney involved NOW. You need to have durable power of attorney, etc asap. She is going to most likely need a nursing home at some point, so get in touch with Medicaid and start the process of getting her into that system to help with the nursing care later on. Contact Social Security and get her on the disability payments... That is a HUGE help, and it will continue to come in as long as she is alive. (Sorry to be so blunt, but you need some honest advice.)
If she has not yet been officially diagnosed, get her to a neurologist ASAP and get that taken care of. The meds may or may not help prolong the symptoms, but every day they can buy you is a blessing. honestly I don't think they did a thing.
Contact the Alzheimer's Assn. And see what resources they have.
The more you can do now, the better off you will be later. Get a notebook and start writing down every name, phone number, date, etc. You will need to refer back to that.
I'll close for now, but I will be checking back every day. you've found a great group here. They were my life line so many times.
I won't make that mistake!!
