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keptfreeinhim

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Aug 6, 2007
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PALS
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US
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Michigan
City
Midwest
Hello,

First posting. My husband began symptoms of dementia age 45. He is now 59 and has probable frontal temporal dementia. His father and uncle both had a similar dementia. One month ago husband was also diagnosed with ALS, probably Bulbar form. He has had speech problems for almost a year, choking and swallowing difficulties for six months, left hand and arm problems for four months and now his right arm and hand are affected too. He has fasciculations in the upper body area. Life expectancy is one to two years. One disease was hard enough to deal with. Now this. With the dementia he is probably at a developmental age of five or six years. I am wondering how I can make all these adjustments needed with ALS when he probably is not going to understand the need for them. He is eating now with foam over his utensils and has to be reminded to take smaller bites and chew carefully. Feeding tubes and all the other items needed as this disease progresses? I am wondering ethically what to do. Am I doing more harm in putting in a feeding tube when that time comes or not? I am prolonging the inevitable? He is so dependent upon me. He would not understand a hospitalization. I would need to be with him 24 hours a day for his security. I know this is rambling, but not taking this path before, I am not even sure what questions to ask. Is there anyone else on this forum who has had both diseases? Thanks for any advice you can give.

Kept Free in Him who holds the world in His hands
 

MaryMcK

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Jul 26, 2007
Messages
15
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Learn about ALS
Country
CA
State
Ontario
City
Picton
Feeding tube

I'm so glad you found this wonderful forum....everyone here is so loving and helpful.
I also was diagnosed two years ago with probable FTD...the language presentation. In the FTD forum I go to, the feeding tubes have often been discussed...and the majority of us with FTD have already indicated our preferences of no feeding tube, as at that point usually we would have lost so much brain mass, that we don't want any artificial means of keeping us going.

I think persons with ALS are in quite a different situation...in that their mind is still functioning perfectly normally, and from what I'm reading many have opted for the feeding tube, and that's great!

I'm still undergoing testing to see what is going on with me....with fasciculations, spasms, and other issues.

I'm sure many others will be in shortly to give their ideas on this. Please visit here often, because this is definitely a great support group.
Hugs
Mary
 

CindyM

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Hello Kept Free and welcome to the fourm. I hope we will be able to support you with what is happening to your family. Mary put it quite well, I think: PALS with the ability to think and reason often choose to live as long as possible. But I see dementia patients every day who are very limited in their ability to understand the world around them and, if asked while they were able to understand, they all chose not to vent or be feed via a tube. This knowlege makes me determined to complete a health care proxy and keep it updated regarding my own wishes.

I'm sorry you have such a tough decision ahead of you. I am sure your heart will tell you what is best, and I am sure you know better than anyone what your husband would want. Best wishes. Write anytime. We will be here for you as much as possible. Cindy
 

brooksea

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Keptfree,

I am sorry you now have to deal with another problem. I have no advice for you, but hope you will keep us posted as to how you have dealt with the situation, as PALS sometimes develop dementia. It must be very difficult for you.
 

edna may

Active member
Joined
Dec 13, 2006
Messages
66
Reason
PALS
Country
US
State
orange county
City
laguna woods
Ftd

jimercat said:
Keptfree,

I am sorry you now have to deal with another problem. I have no advice for you, but hope you will keep us posted as to how you have dealt with the situation, as PALS sometimes develop dementia. It must be very difficult for you.

Keep Free, Sorry I have no useful advice for you, but want you to know we are here to be a shoulder to lean on, any time you need one. There are so many loving people in this forum & if there is an answer to your dilemma,one of them will come forward. But for now know we will be praying for you. God Bless.EM
 

Candi

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Joined
Jan 4, 2007
Messages
10
Reason
PALS
Country
US
State
PA
City
newmanstown
Keep Free, My husband also has ALS and Dementia. Although my husband's dementia has not progressed to the point your husbands has, it is already difficult to deal with the dementia. I am having some of the same thoughts of what to do how how to deal with the changes in him. How do I make decisions on his care as well as financial decisions.
He has recently agreed to stop driving and that it is time for us to move to a more assessable home. If we do buy a new home, do I put it in my name only? He fully expects to be cured within 3 years. I am glad he has this attitude but I also would like to make sure we are prepared if a cure is not found in time.
At this point, I am doing what I can to prepare for the future while keeping him as happy as possible. Fortunately, he is content and is easily amused so keeping his attitude positive has not been too difficult.
Speech is very difficult to understand and although he refuses to use a devise, he will use a pen and paper. I am worried about his refusal for other devices as the need arises but then if he was aware of the dementia progression, would he really want the devises to extend his life. I am not sure I am ready to make those decisions for him. Fortunately, his ALS is not yet to the point of needing to make those decisions.
I will count on forums such as this one to give me Fortunately and keep me positive so I can better help my husband stay as content as possible in this terrible situation.
Candi
 

landscape

Active member
Joined
Jan 14, 2007
Messages
82
Reason
CALS
Diagnosis
07/2006
Country
CA
State
Western Provinces
City
Erehwon
Hello Cindi:

You ask "If we do buy a new home, do I put it in my name only? He fully expects to be cured within 3 years. "

Do you have Power of Attorney for your husband?

Also look into 'Joint Tenancy with Right of Survival'. This allows you to own a house or a car etc jointly but on the death of one of the partners the other would fully own the asset. I understand that in some States there are capital gains problems if the asset increases in value a great deal but it's worth asking about.

Has your husband made a 'Living Will' (sometimes called an Enduring Power of Attorney)?
 

wwjd64

New member
Joined
Dec 14, 2007
Messages
1
Reason
Loved one DX
Country
US
State
CA
City
Hollister
Bulbar ALS and Frontotemporal Dementia (FTD)

KeptfreeinHim:

My mother passed away almost two weeks ago from ALS. She was diagnosed with ALS and then Bulbar ALS almost three years ago. We were made aware that there COULD be cognitive changes as my mother's disease progressed, but were never told specifically about FTD and missed it in the tons of literature there is to read about ALS. I happened to read about it in a medical journal about three months ago and realized my mother met all of the high risk criteria, including a family history of dementia (her grandmother, her mother, and six of her mother's sisters). I wish we had known this earlier as it would have explained a lot of her behaviors. I had assumed it was denial of the disease - that it was certain death: no treatment, no cure. However, now I realize her unusual spending, poor judgment for safety, decreased ability to communicate (even with her typing machine), among many other strange behaviors for her had nothing to do with her life-threatening illnes, but was FTD.

When I first discovered her symptoms "fit" with FTD, I was angry that we were not properly informed as I felt she had not made an informed decision regarding her feeding tube - that the dementia rendered her incapable of making that type of decision. By this time, though, it was too late for my mother to get a feeding tube and my father said that he wouldn't have gone against her wishes anyway. I wasn't so sure about that, but now that I've had a little time to think about it, I realize that my mother (and father) made the right decision. If she had the feeding tube, yes, she would have lived a little longer (at the end she began going downhill very fast because of weight loss as a result of her inability to eat or drink hardly anything anymore). However, it would have drawn out the inevitable end. Those last few days were torture for us and I pray that the drug-induced coma kept her a peace while the ALS finally took her last breath from her. I don't mean to be graphic, it's more about being matter-of-fact. But I just wanted to share "both" sides of the issue as I was there - on both sides - and now I realize I wouldn't have wanted her life to be extended by a feeding tube. It wouldn't have bought her much more time, and the time would have been with little or no quality of life. As it was, she was getting out and around just fine in her permobile up until about six weeks before she passed away. In fact exactly two months before she passed away, she was participating in the Walk to D'Feet ALS fund raiser in her permobile motoring through the park surrounded by her family.

I hope this might help others in this position. Keep in mind that this is in regards to Bulbar ALS as it relates to Frontotemporal Dementia only. Persons with other forms of ALS CAN maintain quality of life, which means a breathing tube and a feeding tube may be a good option for them to extend the time they have left with their friends and family.

God Bless.
 

CindyM

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New England
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Thank you WWJ for a reasoned and logical explaination. Sorry to hear about your Mom. Cindy
 

AngelManFL

Active member
Joined
Sep 30, 2007
Messages
98
Diagnosis
11/2007
Country
US
State
FL
City
Tampa Bay Area
KeptFree and Candi,

I'm very sorry for the situations you are both forced to face. My best advise to you is to get there Final Wishes in writing so they are legally binding. Have them done NOW while they are still able to understand and make there own decisions and especially while they are able to still sign there own name legally. This way there wishes will be carried out and it will take the incredible weight of making those decision for them off yours and anyone elses shoulders. Make sure they are done with legal council so they are binding - it may seem morbid or negative - but do these things while they are still able to make there own decision and it will save you so much later on as ALS progresses.. I will pray for you and hope that this helps in some way. God Bless.
 

paula-jane

Distinguished member
Joined
Feb 8, 2007
Messages
112
Reason
Lost a loved one
Country
CA
State
Ontario
City
Oakville
Hello keptfreeinhim,

You have some tough decisions to make. I don't envy your position, but, I do respect your thought process in working this one out. This is a wonderful forum to get some feedback from people who have some experience and compassion for your position. Provided you have power of attorney, you will have to make decisions for him. Take everything you know about him into consideration when you make decisions. If he does not have a living will, try to remember what he would have wanted and what he may still be able to express to you. At the end of the day, try to come to a decision that leaves you without regret or guilt. You can't change what is happening and therefore you will never feel that there will ever enough you can do to help him. What you need to keep in mind is that there will be a limit to what you are able to do for him. That limit is up to you and how long you are able to cope. Be honest with yourself. Bulbar ALS can be (not always) a faster deteriorating form of the disease. FTD can be associated with Bulbar ALS. The fact that he has both is not a totally uncommon occurrence. As for prolonging ALS with a feeding tube? That is a very personal decision; some people choose a feeding tube and some do not. There are no right or wrong decisions with ALS and you do not have to justify your decisions to anyone else. Understanding your options and then the step after that, can go a long way to helping you with your decisions. For example, if you choose a feeding tube, do you then choose a way to help with breathing as well? Whatever you choose, I wish you peace and comfort in the time ahead. Take it all in... Is there someone at the ALS clinic or a close friend to you that you can openly work through your choices with?
Best wishes.
 
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