I think I've posted on this before, but it seems to be getting worse. Tonight I put dinner on the table and did everything imaginable short of wrestling him (I almost did!) to the table. I even put the plate in the kitchen, thinking he's used to eating in the Kitchen, having food in the dining room confuses him. But all he did was walk off and went up to bed.
DH is so thin and frail, I worry what will happen now if he's missing meals. Lately, DH seems to be slipping rapidly. He had an appt. with the neurologist and he seemed shocked at how he's deteriorated over the past 6 months. He could hardly answer any questions on the mini mental test. Lately, he seems like more shell than person. He wanders much of the night (sundowning I guess), falls asleep after a couple of minutes of sitting, and I can't get him to follow even the simplest request. (Getting him undressed to clean him is a major undertaking most of the time.) The other day we tried going to look at some houses with our realtor (our house finally sold!), but I could not get DH into the car, no matter how hard I tried. It was like I was speaking Chinese. He got frustrated and I let him go back into the house. We went to look at the houses without him.
All of this leads me to wonder if I can take care of him much longer. I feel like I'm copping out (no offense to anyone who put their LO in a nursing home or AL facility). I always thought, I would want him with us til the end, but lately, I feel like there's no way I can care for him when he won't eat, he can barely communicate; I wonder how much longer he'll even know who we are.
It's probably a moot point, since I could never afford a NH. But lately, I feel that if some generous, wealthy person offered to pay for it, I'd go for it. I feel guilty, like a failure, but I don't know what else to do. (Maybe part of it is the stress of selling the house and having to find another one quickly, arrange day care for DH and after-school care for kids, not knowing where I'll be a month or two from now!) But I just can't come to grips with how quickly he's slipping now.
To make matters worse, the neurologist finally conceded that DH's alzheimer's must be genetic (He said it could be a gene that hasn't been discovered yet!) I guess, for someone so young (he's 54) to have Alzheimer's and progress so rapidly, it must be. Now I look at our 3 boys and wonder if they'll be like this 35 or 40 years from now.
You aren't a 'downer.' You are being very real. You have so much stress, I can't imagine how you are able to function. Please don't beat up on yourself. It's natural to worry about your kids. We all do that.AD is in my husband's family big time. I'm feeling stressed bcause I had to have a roof put on the house and a bunch of other odds and ends. Selling a home and buying another one has to be right up there on the stress-o-meter.
I know it sounds cliche`, but do take care of yourself. You are very much needed.
I don't know if we should worry if they are not eating. Maybe it is their way of shutting their body down. They say don't force your kids to eat. They will eat if they are hungry. My DH is 73, much older than yours, but I am not going to worry about his eating if he doesn't want to. I would discuss it with your family Doctor. So far, eating has not been a problem for him.
First, let's address the eating. This is from a care consultant at the Alzheimer's Association:
"..........persons with Alzheimer’s often have difficulty eating due to a variety of factors.of factors. It could be that (they) no longer recognizes hunger cues; becomes overwhelmed with the eating environment or food choices; or perhaps may be losing the ability to swallow (called dysphagia).
In addition to serving meals away from possible distractions and offering him nutritious supplements and shakes, you could try adjusting the table settings by removing any and all distracting objects but for necessary utensils. You might also try offering him one food item at a time, instead of bringing him different foods all at once, as too many food choices may be overwhelming to him. Additionally, you might try serving finger foods, or smaller, bite-sized food items that may be easier to pick up and eat." Jin K, Care Consultant,Alzheimer's Association.
You are NOT copping out by considering nursing home care. You have nothing to feel guilty about. There comes a time when it is just not possible to care for the person at home, and in your case, dealing with young children at home, caregiving is compounded beyond anything imaginable. As for paying for it, if HE does not have any assets in his name, he should be eligible for Medicaid. Even if there are assets in his name, there is NO PENALTY for transferring them to you. Spouse to spouse transfers are not penalized. Consult an Elder Law Attorney about it.
If you are even considering nursing home care, it means that you probably need it. Sad to say, but there also comes a time when the needs of your children and yourself have to come first. There is nothing you can do to stop AD, and if your husband is getting the care he needs with professionals 24/7, although you will always be there to advocate for him, you will then have more time to spend caring for your children.
Thanks for all the great advice. I'm so touched by the fact that I can send a message and practically within minutes, have feedback. It's as close to "real time" support that you can get. And I appreciate it, really.
Tonight has just been hell. After my shower, I came downstairs, had to clean up after our youngest, DH meanwhile is peeing on the side porch, like it's the most natural thing in the world. He gets beligerant, mad when I try to push him away. He just doesn't know what he's doing. How do you explain to a 10 year old why Dad is peeing on the porch, where his backpack is?
I keep thinking, he's gone already, but I can't let go. I need him. I need to believe he's here somehow, but I know he probably isn't., especially when I look in his eyes. It seems lately like no one is there. I feel so alone at times, even though I have the kids, my sisters are a phone call away. I know this night will pass. But it's one of those where I want to get in the car and drive, never come back. But I can't. I hate this!
Thanks again. It really helps to vent and to know someone really understands.
Kelly, you are so strong. I cannot imagine going thru this with children at home. WHen my dad progess to the no eating stage, my mom was at her wits end. He ended up passing out from low blood sugar. when I visited him in the ER, I brought baby food and a small spoon. He would open his mouth like a little bird each time I put the spoon to him mouth. After that we fed him baby food or puree food until he finally passed. My mom was just so overwhelmed that it never occured to her to try the baby food. I know that I will reach this stage with my DH also.
Kelly, in my county the Area Agency in Aging is actually called Aging and Adult Agency. They do all adults over the age of 18 in one office. Even if you don't qualify for help because of age, it is probable that where you live there is an agency across the hall that does work with disabled adults.
Because it is generally easier to find the Aging agency no matter what they call themselves, and because you might be surprised and qualify by age, call them first and ask for help. When I was looking into what would be available when I needed help they offered me a case worker's visit (no charge). Because we weren't ready yet and because the case wouldn't stay open until we were ready I said no. Next time I will say yes.
You need help, and this is one of the doors to help. It is also possible that you have reached the point where Hospice would help. Ask his doctor for a hospice assessment. Most hospice agencies want to see dementia patients earlier than they would with other diseases. After all, all of the dementia meds out there right now are actually palliative care meds. They don't cure anything.
It sounds to me that you are at the end of your rope. When we are at the end of our ropes we generally aren't thinking clearly. I know that I don't think clearly when I'm at that point. I'm really worried about you.
Kelly, I feel so bad when I read what you're going thru. I know it must be really tough on the kids too. Vent all you want. We'll all try to give you moral support if nothing else.
Kelly, I'd agree with Starling's recommendation that you ask hospice to evaluate your husband. Hospice can and should be started much earlier for AD patients than for patients with other types of problems. They may be able to help you continue to care for him at home, if that's what you want to do. At the very least, they can help you understand where your husband's health stands, and offer ideas on what you can do and who to contact for the help you need.
Aging agencies have different names ... here, it's "Aging and Independence Services". They're usually part of the state's or county's "Health & Human Services Agency", so you can probably do a Google for "Health & Human Services Agency" (use the quotation marks) and your county/state to find the name of the organization where you live.
As far as the genetics ... for your husband's AD to be familial early-onset (inherited), one of his parents would have to have also developed AD at a very young age. Familial early-onset is very rare. Sporadic AD ("late onset") can strike younger people, and the course is highly variable in younger people, just as it is in older. It can go fast sometimes. It often goes through a series of sharp declines followed by plateaus where the patient holds steady.
So unless one of your husband's parents had EOAD, don't worry about your children.
Kelly, you have managed so much for so long, and I really feel for you with all you have had to do! Vent anytime! I wish we could help you more! I'd follow Starling's advice, and I agree with Sunshyne as well. You might try a jar of baby food - bananas was always a favorite!
When my husband got to the stage of not eating and peeing and pooping in inappropriate places, hospice helped me place him. MediCal (California's Medicare) paid all but a small share of cost. I dealt with the guilt by keeping in mind that he got better care in the facility than I was able to provide.
And I agree with Sunshyne about the genetics. With inherited early-onset almost EVERYBODY in the family gets it. You would know.
I so empathize with you - my husband was fairly young when he started showing symptoms - 59.
I am so very sorry for what you are going through. You need to think of yourself & children and if you can continue caring for your husband. I agree with others it may help to talk to hospice as to what your options are.
As far as your concern about the genetics of AD I’d like to share what I have learned so far. In familial early onset there is three known genes at this time (PS1, PS2 & APP). Geneticist’s suspect there is at least three more that haven’t been identified yet. These are autosomal dominant genes meaning offspring have a 50% chance of getting the gene, and if they inebriate it they will get it before the age of 65. The PS2 gene mutation may also appear in late onset.
I used to think that only early onset familial was inherited but I am finding out that this is not the case. We were in Chicago for an early advisory group meeting and there were fourteen of us (7 with dementia). The question was raised on how many had no family history of dementia. Only one person raised their hand. Many were in their fifties and had parents who developed AD in their 70’s. Two people in the group had it at the same time that a parent or offspring had it. Can you imagine that? I’m seeing more and more cases where early & late AD runs in families.
If you were concerned for your children I would advise genetic testing on your husband now. I did this on my husband in case our children ever wanted to know.
Please know that we are here for you. Feel free to vent any time!
trish, to expand on the subject of inheriting AD ... there are gene mutations that are known to be risk factors for developing "sporadic" AD, such as the APOE-e4 mutant. However, people who inherit the risk factor simply run a slightly higher risk of developing AD than the rest of us. Some people with the risk factor never develop AD, and people who don't have the risk factor can develop AD.
In addition to APOE-e4, scientists think there could be up to a dozen more "risk" genes yet to be discovered.
While there are three known genes associated with familial AD, I think there are something like 140 known mutations to those genes that will inevitably cause AD at an early age. The exact mutation that runs in the family determines the age at which AD will develop, and some of the symptoms that are seen. Since these mutant genes always cause AD, they are sometimes referred to as "deterministic" genes. Deterministic genes are only found in a few hundred extended families around the world.
Several studies have concluded that environmental factors play a much bigger role in triggering the onset of AD than genetic factors. In fact, the number one risk factor for AD is age. The longer you live, the higher the probability you will develop AD. One out of eight people over the age of 65 has Alzheimer’s disease, and almost 50% of people over the age of 85 has Alzheimer’s. The probability of being diagnosed with Alzheimer’s nearly doubles every five years after age 65.
So as we develop drugs to cure all sorts of formerly terminal illnesses, and improve nutrition, and do other things to increase the average life span, we are at the same time significantly increasing the number of people who develop AD.
As far as genetic testing goes, I'd be very hesitant to do that, even for children in a family known to have eFAD. It can have a very negative impact on your ability to get insurance (health, long-term care, or life) and might even affect your ability to get certain jobs. I know Congress recently passed a law banning such discrimination, but it's very easy to get around.
Sunshyne, I think you covered it all very well. I'll just add a couple things. Chuck's family has PSN2 so we have been facing these issues. I would suggest looking into insurance & getting all your "ducks in a row" prior to testing. Also, you have to consider the psychological impact of knowing or not knowing. Lastly, by around 85 years old, we will all have a 50/50 chance for AD.
My husband's neuro said that he had recently been treating a family in which three sons, all in their TWENTIES, had EOAD; their father died of EOAD in his forties. A fourth is fine, but that fits with the genetics - we think WE have problems!
briegull, the longer I read here and at "the other site", the more amazed and saddened I am by the numerous problems so many people face. Some, like the family your neuro is treating, have multiple family members with AD. Some have children with developmental disorders, or are suffering themselves with miserable chronic disorders, on top of close family with AD. Yet they don't complain about it -- you usually don't find out about their other problems until they come out when the people are offering help to others.
I wish the Neuro's would recommend message boards like this one to their patients, but when they don't do more than mine do, that is too much to hope for. When we go back to the Neuro in January, I plan to take her a card with this site on it and hopefully she will check on it. So many in a family would really 0 really be devastating, and we are complaining....
Mine really did, yesterday. He went on it before we left! and came running out to ask me who I was.., said he was getting hooked! He also opened up the pdf of the "dementia experience" And I saw him bookmark the site, so I know he really will recommend it. He felt pretty helpless when he asked me if I was getting the help I needed and I said no! I'm actually doing okay except stir-crazy but it's a question of working out CNAs for the days I need them, etc.