My husband was diagnosed with dementia at age 59, perhaps related to a severe concussion 35 years before, perhaps not. Over the past five years since his diagnosis, it's been a rocky road, as I'm sure everyone can relate to, as I've gone through the various "stages" of denial, anger, despair, and, now, a sort of acceptance associated with sadness, at least most of the time.
At this point, my husband is basically unable to communicate verbally. He's exceptionally physically healthy and is still somewhat active in that he goes with me for a daily morning walk with the dog, although he's rather slow; when I run errands; and when we socialize with neighbors, although that means that I basically "park" him with a drink and appetizers, and he simply listens but seems to enjoy but doesn't participate much in what's going on around him.
His abilities, when it comes to activities of daily living, seem to change from day to day, i.e., his ability to follow the necessary steps when it comes to dressing, table manners, personal hygeine, and toileting. I have to help him to some degree with all of that now, some days more than others.
What is a constant is my determination to keep him at home with me. But, I've done my homework, and I know that all of the above will become more and more difficult for both of us as time goes by. My question is, how best to prepare. I've moved us from a high-maintenance single-family home on different levels to a condo with an elevator. We now live in a warm climate with beautiful water views from every window to replace the experiences we used to have when we were able to travel which was quite often as our home was very chilly and dreary during the summers. On a practical level, our new home will be able to accommodate a wheelchair when/if one becomes necessary. Our master bedroom has a very large walk-in shower which will make bathing easier. And, I may replace our king bed with twin electric beds since my husband is in adult underwear already and sometimes leaks through the pads at night when he gets up to go but doesn't follow through.
My main concern is how I'm going to get him from bed to toilet, shower, etc. if/when he gets to the point where he can't do it himself. He's 6'2" and weighs around 220 lbs, and I'm 5' 7" and fairly strong, but I can't even move him by pushing when he gets into the car and has pulled the seatbelt behind himself rather than in front.
For those of you who have been through this, I'd appreciate some practical advice about things I can do now in anticipation of what will come.
ac-see if your husband's doctor will order a physical therapy eval from a home health agency. MC will mostly pay for the service and they should be able to maximize your husband's current ability and instuct you in safe transfers. They should also be able to advise you about special adaptive equipment.
Also, start having some help in--get him udsed to others doing things there, and occasionally assisting him. Lighten your load by having housework done and the helper can make lunch, for example. Then shift into the helper helping him more, and on occasion you use the time they are there for respite. Gettinbg him used to others helping him will make things easier down the road when he requires the help, or if anything happens that requires you to be away.
I second those things. It sounds like your home is suited to managing him for a good while yet provided you can have help in as needed and adaptive equipment. Your husband sounds very much the way mine (who is now 64) was a couple years ago. Since then, difficult behavioral changes have steered me into finding him an ALF. But if your husband remains mild-mannered, not wandery, and cooperative, your home could continue to work fine. But WITH help.
Thanks blaze, carosi, and emily. I have had my husband evaluated for occupational and speech therapy, but they had a problem with our insurance provider (Medicare Advantage), so I'm going to have to research and find one that is a provider for our plan.
My husband has always been a very easy-going, cup-half-full type and has continued to be so, although his inability to process and follow instructions at times makes him appear to be stubborn. He tolerated the physical/occupational therapist "handling" him when she helped him shave to show me how to get him going. I'm not sure how he'd respond to more intimate interactions when it comes to toileting and showering. I think having someone come in to help around the house and and then transition into more of a caregiver/helper role is a great idea. Does anyone know if Medicare or insurance in general covers some or all of this sort of care?
So far, my husband hasn't wandered, although he has left our apartment twice, presumably to find me, when I was actually taking a nap. Luckily, the dog alerts me when he hears the front door open or close, and my my husband can't go far anyway since he can't operate the elevator (which is coded).
My biggest fear is that I'll be unable to physically get him from point A to B, specifically to a toilet or shower, at some point so that I won't be able to keep him clean.
Sorry, I don't know the answers to some of your questions. Others will know and help you. But, regarding him leaving your apt. but you don't worry too much about that because the elevator is coded. What if someone came up to your floor and held the door open for him that didn't know his condition? He might not know the how to get the elevator back to your floor. You might want to consider having some special locks put on your door so that he can't leave without you or an alarm system.
ac--Medicare only covers in-home help for a limited time, after a hospitalization. The type of insurance that covers it for long term is called Long Term Care Insurance. Does you husband have that type of policy?
Judith, we live in one of two buildings with only 5 apartments on each of 9 floors, and we're all fairly social. I've shared his condition with nearly everyone here, and I know they'd help him back home if they saw him out and about without me. Nonetheless, I have purchased a loud alarm for the front door, just in case. Later, a tricky lock may be the answer, but he's still able to figure out such things (i.e., in hotel rooms) at this point.
Marilyn, we don't have long-term care insurance...his diagnosis went on record at almost the same time I was filling out the paperwork to apply for it, and it was too late. And, Zibby, he isn't a vet...just of the Army Reserves and is entitled to no services. I'm basically going to be on my own. You're right, it's hard to think about him losing weight (wasting away...) since he's still got his usual huge appetite, although I suppose I may look upon it as a blessing at some point.
Carosi, I'll take your advice about the Alliance on Aging...hadn't thought about that. I know I'm going to need some sort of help...life is exhausting enough now when he's still ambulatory and physically strong since I have to do everything by myself plus help him with everything. Sigh...
Guess the elevator thing really rang a bell for me. Last year when my dh and I were on a cruise, I got on an elevator in front of him and the door closed before he could get on. Of course I went into panic mode...but he still had enough sense to ask someone what his room number was and they found his room number for him and before I could alert the desk, someone had brought him back to his room.
Oh, I can just imagine how you felt! My husband has gotten lost in hotels several times and had to be shown back to our room. Now, I wouldn't let him go on his own.
Your story reminded me of an incident when we were leaving on a train trip from Kent, U.K., to head to London for a night. Our friend and I had just stepped into the train when the doors closed, leaving my husband standing on the platform! Of course, as you did, we both panicked and started screaming and pounding on the doors. Thankfully, an attendant "got" what was happening and alerted whomever was operating the train. In the meantime, while they did whatever they needed to do to open the doors, he jokingly draped an arm around me and my friend, winking and waving bye-bye to my husband on the other side of the door. During the whole incident, my husband just stood there, totally unruffled as he usually is, smiling and laughing at the attendant's antics. I shudder, even now, to think about what would have happened if that train had left him alone in that station since he wasn't able to communicate any information about himself by that time!
My husband can still do almost all his activities of daily living himself, but he already uses a portable urinal a lot of the time because it is too much trouble to go to the bathroom. A commode chair is another possibility. If he can't assist with transfer (at least stand with minimal support) then people either just give bed baths or use a lift (like this: http://www.youtube.com/watch?v=EP2myQVns9s).
Welcome to my website. Welcome to my website. I started this website in 2007 because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience".
There are 4 sections for EOAD (early onset AD- now called YOUNG onset) - which applies to your husband (diagnosed under the age of 65) -two of which focus on the young teens whose parents have EOAD. There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
As one who kept her husband at home until he passed away, I will share with you how I did it. There will come a time when he will want to leave, and you telling him no and trying to direct him to something else won't work. A deadbolt lock that opens with a key from either side keeps him in without you standing between the door and him and his trying to get around you to leave. I kept the key on my bracelet so that I could get out at any time. All outside doors were "keyed" to the same key. All guests were given a key upon arrival and returned it upon departure. I would have lost him if I hadn't had that.
I took him to get a haircut once a month with the help of a friend. I also took him out to eat and to the movies, even when he couldn't walk (but could still stand) in a wheelchair (I had to take him in an SUV because he couldn't get in and out of a regular car anymore. He LOVED to go places, until the end.
I gave my son and his wife my dining room set once my husband couldn't get around without assistance (I could hold his arm, or walk in front of him holding both his elbows while he shuffled his feet) - after a few months, he could barely support himself to stand. I had a hospital bed (from Hospice - he had been given 6 months or less - he lived another year) that I placed in the dining room which opened into the den, and his recliner was placed beside the bed (easy to help him dress and stand up, dance in a circle and set him in the chair - so he could watch TV and see me whether in bed or chair during the days).
While your husband is able to get in the shower, lay out clean clothes and after his shower, help him dress. If he doesn't want to shower, try to get him to shower with you (that worked for me for several months!). Pull over shirts worked great and pants with elastic in the waist are easier to push down and pull up. We have several discussions about clothing and where to buy them.
Down the road, when you call Hospice to call and evaluate him, they will help you a great deal. Hospice furnishes aides that will bathe him, brush his teeth, change his bed, etc. for you - I started with twice a week, and ended up with Monday through Friday - daily, and toward the last month, seven days a week. They usually are there an hour or so. I hired a caregiver to take care of my husband during the days because I still work. He fed him breakfast and lunch, and was company for him during the day until I got home. He would change him, and towards the end, placed him back in the bed for the evening for me. I couldn't lift him at all once he was unable to stand. After four 911 calls when his legs gave out on him, he became totally bedridden (the last three months).
In order for your mental health and physical health to see you through this, you will need respite care. The Alzheimer's Association has volunteers that will come and "sit" with him - read to him, talk to him, watch a movie with him - even feed him lunch....so you can get out for a few hours. This is mandatory for YOU to make it through....I know. Because the last few months will take everything that is in you and more.
If you have health insurance to supplement Medicare, call them and ask them to assign you a Case Manager. That nurse will see that you get everything your policy entitles you to have. Mine (I was blessed!) paid for five days of respite care a month at the Hospice Hospital, which allowed me to get things done that I couldn't do in my regular days, and allow the stress to recede enough to go at it again for another 25-26 days a month. I didn't realize how wound up I was until afterwards.
It has been 11 months since he passed away, and it seems like yesterday. I still haven't totally unwound, but I'm getting there.
I wish you the strength and courage in the days, weeks and months ahead. I hope my sharing the details will give you some insight into what you are facing, and make your journey easier.
Thank you Joang for the welcome...I've checked your site out in the past and found much of great interest. Thanks also for sharing your experiences and expertise.
Pam, I checkout out the link...wow...looks complicated...I think I'll worry about that when the time comes.
Mary, thank you so much...that's exactly what I was looking for. The practical issues have to be addressed, of course, but I also want to be a bit prepared, as much as possible, for the other stuff.
So far, my husband's confusion about how to get from point A to B is my biggest obstacle, i.e., he'll get up to go to the bathroom at night and sometimes accomplish it and sometimes does everything except remove his clothing first. Those are the days when, despite two "waterproof" pads, I have to change all the bedding. Or, if I don't set out his toothbrush with the toothpaste already on it, he'll reach in and grab the shaving creme! Or, if I don't set out one t-shirt and pair of boxers as his PJ's, he'll get his own, and that means that, on occasion, he'll put on every pair in his drawer! Sometimes, I find it amusing as he seems to, but just don't understand what in h--l is going on (or not...) in his brain!
I appreciate the advice about getting our insurance to assign him a case manager. I wonder if that's something I can do while he's still physically healthy. Am I right in that Hopsice services will kick in only if it appears that the end is expected within six months? I believe we're a long time away from that.
If you don't mind, did you or do you regret that you kept your husband home with you? There are times when I get so frustrated and angry with my husband (for unreasonable reasons since he certainly didn't ask for this and, so far, handles his limitations with humor and grace--much more than I'm able to) and I WISH myself on the other side of the planet. However, I know in my heart that there's no way I can NOT stay by his side to the end..we've been together since I was 18 and he 21, and he has always taken care of me and honored that "for better or worse, in sickness and in health" thing without question.
I'm not sure what he remembers or knows since he doesn't speak more than a few words here and there, but I can tell that my presence brings him something...security,comfort, whatever...by the way he looks around to find me and then flashes his beautiful smile when he locates me. I mourn the past that we shared that I can't and will never be certain that he even relates to anymore. But, that smile, that's enough, for the moment.
On the other hand, I'm not the patient person he is, and I really hate the whole "caregiver" role, so I hope I can manage to stick to my strong feelings about this. No offense to anyone who's made the painful decision to place your spouse in a facility...I know very well that I haven't walked in your shoes and have many, many worse days in my future that may, despite my resolve right now, bring me to that point.
Like you, we were married when I was 18 and he was 21, and we were together for 50 years.
He also lost the ability to talk. It was in his head, but at first didn't come out right - then he would pause before answering to make certain he would say the right words. It went downhill until the last two years, when he had 5 words in his vocabulary - yes, no, good, fine, and okay. Then just yes and no. Finally, only yes - so if the answer was no, he didn't speak and I knew it was no. After all our years together, I could answer for him with other people - we used to finish each other's sentences. <grin>
When he would get up during the night to go to the bathroom, sometimes he made it, sometimes he thought the chest of drawers was the toilet. Then the lab (male) figured he was marking HIS territory, and would mark it again! I spent a lot of time trying to dry, deodorize and save that piece of furniture....It was the first piece out the door after my husband passed away. It was coming apart at the bottom.
Another shock was one day when he went into the back yard in the afternoon to go to the bathroom! Thank goodness none of the neighbors were home! And then there was the caregiver cruise - when we were getting on board the small boat to go back to the ship, and he decided to mark the ocean.....<grin> Number one rule - keep your sense of humor......
There will come a time when he goes from his underwear to Depends. When he needs them, toss his underwear in the trash and put the Depends in his drawer. Be glad he wants to wear clothes...even layers (common) - some want to go nude!
Another thing..their visual perception goes - that is why they walk behind you if you are not holding their hand. They can't see very well. They also lose their abiity to comprehend what they read, and fail to comprehend what is on TV - hence the desire to watch favorite movies over and over and over ---and over. (I know 6 movies by heart - and now have over 300 DVDs - purchased one or two at a time over 4 years in order to save my sanity)
Remember that they are going from their physical age, to 40, 30, 20 and their teens (where their sex drive resurfaces with a bang!) to 12 year olds, 10, 8, 5, 4 to toddlers to infants. Remember that (though you always talk to them like the adult they really are) but they are thinking like children - and reasoning like children. And their fear of losing you makes them follow you around the house, and check on you when you go to the bathroom.
Yes, it was worth it - and yes, I made the correct decision for US. Not everyone can do it physically. Also, my husband never had rages and never attacked me. A lot of the women here have had one or both happen and have had to place them. There is no right or wrong. Just continue to do what you can....and get respite.
Hospice doesn't come on board until they can't walk without assistance, dress without assistance, communicate fully, cut up their own food and feed themselves. In other words, when you have to do everything for them. Each Hospice over the country seems to have their own guidelines.
Yes...it probably depends on where you live. The visiting nurse was just here and she is going to have someone from Hospice come and take care of my dh's medications since he takes so many. Hospice was here a year and half ago and my husband could walk, dress and communicate fully, cut upfood and feed himself...I didn't think we needed them at all..but, the dr. said he wanted them to come to evaluate my dh since he had 2 terminal illinesses... After about 4 or 5 weeks. they left.
ac- Mary has many suggestions that she has given you and she is an expert at caregiving. I also kept my dw at home, but she weighed 90 lbs, and I could pick her up if I needed to. But there did come a time when she was totally bedridden, and I finally bought a bedside commode that I could place close to the bed. I would put her arms around my neck, swing sideways, and release her on the chair. But there did come a time that it was too painful for her, and I just used some extra absorbent pads under her. However, her nightgown would act like a wick, and still had to change all the bedding. If you need more advice, I am a reservoir of useless information, and would be happy to give you my solution to problems. It is not easy at all, but if you can find some help, it is entirely rewarding, and so much more comforting to have them at home. You are in total control, and that is not such a bad thing. It will wear you out, but you do recover. Feel free to email me with any questions or needed advice.
Thanks Mary and Phranque, and I guess I'll talk to our MD about Hospice here in FL, Judith. My husband is unable to communicate. I can tell that he understands most of what he hears, and he can read a sign or something from a book or magazine out loud if he feels like it, but he can't express himself at all. His answer to every question most of the time is "yes." He can feed himself, but he eats very slowly (not a bad thing), but he has trouble with a fork and knife, and I started cutting his food when I saw him use the steak knife (serrated and VERY sharp) to cut his meat but then speared the meat with his knife and put both into his mouth! So communication and eating are problems already. He's already in disposable underwear.
I'm lucky that my husband has always been a very positive, go-with-the-flow type and that hasn't changed at this point, five years into his diagnosis. I certainly can understand why someone would choose a live-out situation if their spouse was physically abusive. I hope not to have to find that out.
I was happy to read that you have no regrets, Mary...so far I haven't spoken with anyone who has kept their spouse at home and I'm so grateful that you and Phranque are so generous in your willingness to share your experiences with your spouses.
And Mary, I can totally relate to what I call the "nature boy" thing...my husband and I had just moved and didn't know anyone yet at our new home. We were down by the pool one day and I had just met a woman whom I really liked as a potential new friend. We were in the pool, talking, when my husband got out of the water and went over to our lounge chairs behind me. As she and I were chatting, I saw her eyes look beyond me and grow as huge as saucers. When I turned to see what she was looking at, it was to see my husband who apparently had to "go" and had whipped it out and was doing it right there! Way to make new friends!
From then on, I've tied his (no, not that!) suit drawstring into double and triple knots when we go to the pool!
And, Phranque, I already know it's not going to be easy...it isn't easy now, but I'm glad I've now got some nice people to go to for advice when issues come up.
Blue...so sorry about your keyboard...and Vickie and Blue...glad my experiences can contribute to a laugh or two! Honestly, I still get a case of the giggles whenever I think about that moment. Fortunately (although unfortunately, for her...), this lady had lost her own husband to cancer at a relatively young age a couple of years before, and she was completely understanding. We've actually become good friends in the brief time we've lived here.
Thankfully, my husband hasn't done such a thing since that time...but, then again, I keep an eagle-eye on him most of the time...maybe the threat of my carrying out some sort of "surgical" intervention if he does has had something to do with it??? (Joking, joking...it's those knots...I KNEW Girl Scouts would be good for something!)