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Old 11-20-2008, 08:02 PM   #1
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New needing guidance

Hello, my name is Steve. I live in Mpls, MN and have parents living North of Duluth, MN. My Mom has Alzheimer's. She's had a very slow onset that began about 18 years ago (or at least that's when my sisters and I recognized something was different) - she's now 76 years old. That's sort of a double edged sword - we've had extra time, yet always thought we'd "have extra time" to take care of future inevitable issues.

The issues are now upon us and the lengthy delay has done nothing but made it more difficult to deal with. One Sister has moved out East, the other is in the midst of her own battle with depression. This leaves my parents... and me.

Well, there's a little background... and here are my challenges:

My Dad, I love him dearly, but he's simply not a caregiver - never was. He and my Mom live "out in the sticks" - about a 45 minute drive to Duluth, MN. The problems with this are obvious - my Dad doesn't possess the compassion to properly care for my Mom and they are simply too far removed from civilization. My Dad has been battling cancer (and winning!) but at 78 is nowhere near as spry as he once was and is ill equipped to handle my Mom's worsening condition. Actually he's struggling to accept what's going on (IMO). Although he verbally acknowledges my Mom's difficulties, I think he refuses to take action because he'll feel as if he failed. He feels as if it's his duty to bear this cross. What he refuses to understand is that he's not actually helping my Mom by denying her the care he simply cannot give. Please understand, I'm not faulting him, he's doing his best but it's not the best thing for my Mom.

My Dad has little patience - he even admits it. I understand it because I'm his Son and have similar traits. The problem is that he won't admit it TO HIMSELF. He acknowledges my Mom has a problem, yet expects her to do the things she can no longer do (like remember to wear the new shoes he bought her) and then gets mad at her when she doesn't. My Mom doesn't even remember that he bought her new shoes, much less to wear them. They went to a mall - my Mom had to use the restroom. My Dad told her to wait outside of the restroom when she came out while he went to another store to get a battery for a watch and that he would meet her there when he returned. An hour later he finally found her outside of the mall. This is after a similar incident at, of all places, the MN State Fair - 1000's of people... He simply refuses to accept and deal with this appropriately.

My concerns are probably obvious. I know my Dad can't take care of her, yet when I talk with him about it and getting her help, he always says he can still handle it... "maybe later when it gets worse" he'll say. Well, it's worse but the problem lies in convincing him. It would almost be easier if they were both battling a similar problem. My Dad's pride is keeping my Mom from getting better care and it's slowly killing him through the misery it creates in his life.

I've tried suggesting having someone come in a few days a week to help "cook and clean" (2 things he's always complaining about because he's the only one who does it now). This is still met with a "maybe later" response. I'm growing evermore concerned about him leaving her alone when he runs into town - remember it's 45 minutes each way.

So, the million dollar question: How do you convince a spouse (an overly proud male spouse) with a strong mind (and will) that he can't properly care for his wife of 44 years? How can I convince him to let me help get her the proper care? How can I convince him he's not giving her the proper care?

Bottom line, they need to move. They're not wealthy, but money isn't an issue. They have good health insurance. My Dad would be capable of helping to facilitate a move but I don't know how long that will last.

I need to find a good place for, at least, my Mom to get the care she needs. I'm thinking Duluth, MN but it could also be here in Mpls, MN. What's the best way to find good care? Are there reviews or boards to read about finding the best care facilities? I was reading the 7 stages - my Mom is now between a 5 and a 6 - is home health care out of the question at this point? What should I do next?

If you have dealt with similar issues (convincing a non-Alzheimer's parent they can't care for an Alzheimer's spouse), I would love to hear how you handled it. But, all advice is deeply appreciated. Thank you all for sharing your stories and thoughts.

-Steve

 
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Old 11-20-2008, 10:13 PM   #2
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Re: New needing guidance

It is late and I need to be in bed but here goes...... First I want to welcome you to the board. I am truly sorry you need to be here but glad you found us. We are all were you are or have been there or will be there. Drag up a glass of wine and come back often

I was in a sorta kinda similar situation and I can tell you.... find a good assisted living center and move them to Minn!! Don't give them a choice. Use the Mom getting lost situation or something similar and just do it.

My Dad has has Vascular Dementia for years. Mom insisted on keeping him at home and doing it herself. She refused help of any kind. We all live at least 2 hours away so we could not stop in. Then Mom convinced us that she was depressed. We offered in home help to give her a respit, we offered to come more often, we did everything we knew to do and she refused.

I don't know if the depression came first of the Alzheimer's.... I think she realized something was wrong and the depression was a result of the ALZ. But she hid her inabilities for several years. She was depressed!! We did notice she was becoming short tempered with Dad. She complained that she could not deal with him but still refused help.

Then we got that call.... Dad was in the hospital. She said he had a stroke but they found no indication. I went home, knowing Dad had a new Xanax prescription and counted the pills. She had given him an overdose of Xanax over a period of three days. It was not intentional... she didn't remember giving them to him. We insisted that she be tested, got the diagnosis, and she refused to move..... she could handle it. So we tried in home care with us rotating coming home every weekend. That worked sort of kinda for a while and then she went off the deep end, running off the caregiver. She was perfectly capable of taking care of herself and Dad... just ask her!!

My sister showed up. She took Mom to the doctor for med adjustment for her depression and anxiety and took them home with her. The next day they visited two Assisted Living facilities. We gave them a choice. She fought it at first but then decided it was best for Dad and went along with it..... to a degree. We took them back home with me and my sister there to pack what they wanted to take. We only talked about the positive. How wonderful it would be not to have to deal with the daily responsibilities. Mom would have help with Dad. They would get the socialization they both needed along with well planned activities. They would be close to two of my sisters so it would be so much easier on us. We drove that idea into the ground. How difficult it was to drive so far when they needed us. They would be able to see some of their grand children with regularity. How wonderful it would be to be able to visit them several times a week. How much help we could be if we were closer... you get the idea. They had two days to decide what to take with them... including the furniture that would fit in the AL apartment. We had to have medical records transfered, addresses changes, and on and on. So there was a flurry of activity to keep them busy. Then we put their suitcases in the car and my sister took them back home with her. I stayed at the house and another sister showed up with a truck the next morning. We packed up their stuff, loaded it, drove it to their new home, unloaded, and unpacked it in one day!!... with a little help from their church on the loading end and other family members at the unloading end. By that night they went to supper in their new home... in a new town 2.5 hours away.

We didn't give them a choice.... we just did it. At some point you realize the danger of leaving them home alone and you have to make the adult decisions for them. My Mom had enough awareness to know what was going on but she was incapable of stopping the steam roller that her daughter's became. Let me tell you she's a stubborn one. They had lived in that house for 54 years. My Dad built it. She was determined to never move out. She would rather die then live anywhere else..... Yet in 5 days, once her head stopped spinning, she was in a new home.

So there you have my story. You do what you have to do whether they like it or not. They will adjust. Dad was fine within a month and after 14 months he thinks he has always lived there. Mom, because she is more aware, has taken a little longer but she's getting there. She does like being near my two sisters and is thankful for the help she gets with Dad. The last time I took her back to her home town for her aunt's birthday party.... she didn't even ask to go by the house. So it is can be done.

Hope to hear from you again soon... I will keep you, your Mom, and your Dad in my thoughts and prayers.....

Love, deb

 
Old 11-21-2008, 10:00 AM   #3
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Re: New needing guidance

Steve,

Welcome to the board, and welcome from another Minnesotan! I was just home last week. Your story was mine two years ago except I am/was an only daughter. My mother was stricken with the disease...daddy was the care taker covering up for Mom..We live in Washington DC area. Well, you are living through it now so I don't need to tell you how it goes, do I? I don't know where in the Cities you are but there is a good care facilities-Masonic Home in New Hope on Boone Ave. Both my Mom and my Dad were there. My mother was in the locked AZ. unit.I cannot say enough about the staff and care.

That being said it was developed because of the time I took to develop a relationship with the staff and to call every day and to make friends and to drop off goodies and thank you note to the head of the nursing staff. You will need to build a relationship whereever yuo end up putting your mother.

You need to convince your Dad that he cannot for your Mother's sake, take care of her. She needs to have skilled nursing care NOW. She is no longer the woman that he married, no matter how much he wishes she was. And hoping that she will return isn't going to work. I don't mean to sound harsh, but I watched my father live through the same thing and it near broke my heart and my fathers-not to mention what it did to their health!

Getting frustrated and angered and impatient isn't going to help either. Your mother no longer has the cognitave ability to realize what he wants or needs or means. She will get lost and befuddled and confused.

What you need to do is to make sure that you are on their bank accounts. That you have POA both durable and medical. Then you need to go to your mom's doctor's appointment with them and have her doctor talk to your dad about getting help in or getting them in assisted living or whatever needed. YOu may need to go up to Duluth and start looking for assisted living places that can handle both your father and your mother. Or you may have to move then down to the cities with you. Is your Dad a Veteran? The Vet home in Mpls has a good AZ. wing. We were going to put Mom in there. It has been cleaned up and is well run.

The Presbyterian Homes in Minnesota also have good AL and AZ facilities. Mt. Olivet Lutheran Church also has a AZ wing and AL. that are good. we had checked into all of these when we were looking for a place for my Mom.
I hope this gives you some ideas.

I have been in you shoes so know what you are dealing with. You have my sympathy. Please post back and let my know how i can help you. You really need to push you father on this one. The winter isn't kind in Minn. and you don't need your parents suffering...And at this stage your mother shouldn't be left alone....again welcome.

 
Old 11-21-2008, 06:00 PM   #4
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Re: New needing guidance

Hello - and welcome.

The problem with putting it off until it really gets bad is twofold - first it's bad now!! It just got bad so gradually he didn't realize it. Second, once the caregiver throws in the towel, it's a full blown crisis - and there are waiting lists, paperwork and other hurdles that have to be dealt with --- in the crisis. It's easier to make some plans now.

Based on my experience (Mom had major health problems, Dad had ALZ) you could try getting someone other than you (the kid) to deliver the message. A Dr., a trusted old friend, clergy - whoever your Dad relies on.

The message is that he can make decisions now - or others will make them for him when there is a crisis. He needs to find a safe place for her - or both of them, because she needs it.

Also - as you are long distance, have the phone number of every neighbor, friend, Dr. plus their POA (if they have one) with you at all times. You never know when something will come up and you need ground truth. Also - having the POA is crucial - if your Dad is hospitalized - your Mom won't be able to talk to you, and the Dr's won't be allowed to talk to you because of HIPPA laws.

good luck and hang in there

 
Old 11-23-2008, 07:32 PM   #5
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Re: New needing guidance

Thank you all so much for your responses. I know you're all aware how much it means to have support. Well, it means even more coming from complete strangers who come out of the woodwork, as you have, to offer what you can... again - thank you.

OK... I'm going to set a plan in motion. I agree - something needs to be done now. As many are, my wife and I are struggling a bit financially right now. She's home with our son who's been diagnosed with Asperger's and I'm self employed (wholesale picture framer who's customers are pretty much all out of business now). We're pretty much starting all over. That said, we're feverishly beginning a few new ventures that are consuming a lot of time through the end of the year. However, beginning in Jan - I'll be able to spend a fair bit of time up North.

Here's my plan - please tell me if you can think of anything else I should be doing:

Starting tomorrow, I'll call my Dad and start in on the "we've got to get you closer so I can help". I'll feel him out to see if he'd rather be in Duluth or here in Mpls (closer to me). Either way, they definitely need to move. I know that he'd love to be closer to people (he's a people person) so that should help. He'd also LOVE to be closer to his Grandson (my boy - 4 yrs old). He's a HUGE Gopher fan so that may help entice him to move to Mpls (attending games - with his Grandson). They have a fair bit of lake property so selling it should pay for all their expenses - eliminating the "cost" worry. He's actually already got that underway (starting to get the lots surveyed, etc.) It's just that, as many do, he resists change. But - after reading your advice - we'll just push through it and effect change - he'll deal with it however he deals with it. It is, after all, for the benefit of my Mom - certainly he'll want to do what's best for her. (Sorry if this looks like I'm writing a book - I'm just thinking out loud and it helps me to type what I'm thinking to make it more concrete in my mind - plus it keeps me accountable to you when I put it in writing - thanks for that). I'll start checking into AL W/AZ capabilities in both Duluth and Mpls now. Again, any advice from anyone in the Mpls or Duluth areas is more than welcome (thanks ibake&pray!).

I'll also start talking to my Dad about POA and make sure I'm on their bank accounts in case of emergency. Upon the arrival of the bitter cold winds of January - I'll be able to get away and head up North. Those cold winds should help convince my Dad that moving is the sensible thing to do. We'll use the month to determine which city (Mpls or Duluth) they'd rather live in and to research facilities. We'll finalize a facility in Feb and plan to have them moved in by May (it's a little warmer by then).

Am I missing anything? Does anyone have additional suggestions as to how to pick a facility - or have 1st hand experience in doing so in Duluth or Mpls?

Lastly - thanks again. Thank you so much for both your insight and support. I'm sorry you possess the knowledge/experience - yet I appreciate your willingness to share it with me and others dealing with the misfortune of Alzheimer's.

Wishing you all the best,

-Steve

 
Old 11-23-2008, 07:51 PM   #6
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Re: New needing guidance

Yes, you have a plan Steve and we will hold you accountable. That plan will be refined and altered as needed. Nothing with ALZ is set in stone. You learn to be creative and flexible. But you have something on paper that is workable, you have a goal, a mission, and a process to get it done. You are now on the fast track. Kudos to you!!!

Making the decision and getting started is the hardest step. It is acceptance that is so difficult. once you get past that it's a snowball that will pick up speed. Your Mom and Dad will be better off for your efforts.

I am so sorry for your son's diagnosis and I am sure you and your wife have your hands filled with him and the business ventures. Find the time for the POA, Medical directive/medical POA, and checking accounts. That needs to be done now. Then work on the move.

Please continue to post as you make progress. Yes, we are all in this boat together and we will keep each other afloat. Grab a towel...

I will keep you, your parents, your wife and son in my thoughts and prayers...

Love, deb

 
Old 11-24-2008, 05:33 AM   #7
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Re: New needing guidance

Steve,

First of all, welcome. I am sure you will find some answers to your questions here, keep them coming.

You didn't mention if your mom was under a Neurologist's care, if she isn't this is something that should be done. Perhaps you can help them find a good one experienced in caring for Dementia and ALZ patients. There are medications out there that can make this journey easier for both of your parents and you.

I realize your plate is quite full at this time, but take a few minutes and contact the local or area Alzheimer's Association both in your parents area and in your area. They are a great resource and can help you find Doctors, care facilities and provide you with a lot of good information about AD, Dementia and help guide you through the legal maze of POA's etc.

We all know how difficult it is to care for a loved one with AD or Dementia. All of the folks here on this forum are happy to share their experience with you. This is a difficult journey, you are not alone there are many of us traveling the road with you.

Jim

 
Old 11-24-2008, 05:38 AM   #8
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Re: New needing guidance

Sounds like a good plan, Steve! 100% better than those who ''wait and see" and deny anything serious is wrong!

Good luck too with employment. My older son has been out of work for months, it is very scary. Let us all hope the economy improves soon!

Love,

Martha

 
Old 11-24-2008, 08:18 AM   #9
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Re: New needing guidance

Steve,

Sounds like a good start. Also, a good read is Caring for your Elder Parent. And also read the 36 hour day. Start checking into AL facilities that have step over units that your Mom will be able to move over to. With this disease she will progress faster than your father and she will need to have a lock down unit that she can be moved into. It will help that it is connected to the same facility that your father is living in. That's why you want a 1 stop type housing such as my parents had. It's the best when they can move in as a couple then be able to move as the need progresses.

You also need to make sure that your mother has a good doctor that understands the disease. I don't care if he is a specialist as long as he is willing to work with you and to try new modalities. You need to have everyone on your side, but the doctor is extremely important. If he isn't willing to work with you or to acknowlidge that there is trouble ahead-find a new one NOW.

Good luck and keep us posted...and good luck with your son you have your hands fulls there....

 
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